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How to Watch the Biggest Science Story of 2017

Posted by Leah Lowthorp on January 19th, 2017

Close up of several strands of DNA in blue color

Less than three weeks into the new year, gene editing is already set to be one of the biggest stories of 2017.

CRISPR, the latest gene-editing tool, allows scientists to make changes to DNA faster, cheaper, and easier than ever before. There has been an explosion in the number of researchers using this technique over the past two years, and the coming year is sure to see more.

Media coverage of gene editing is also likely to be extensive. And if past experience is a guide, it will include lots of hype and ample confusion. In an effort to provide clarity, here are three key points to watch out for.

1) Germline gene editing and “3-person IVF” are not the same

The first 3-person in vitro fertilization (IVF) (aka “mitochondrial replacement”) birth was reported in September, where a baby with DNA from three people was delivered in Mexico by a New York-based fertility doctor seeking to avoid US regulation. Since then, there has been a tendency in the media to conflate the technique with gene editing.

On New Year’s Day, for example, NPR published a piece on 3-person IVF with the headline “Unexpected Risks Found in Editing Genes to Prevent Inherited Disorders.” After recognizing the error, NPR changed the headline to “Unexpected Risks Found in Replacing DNA to Prevent Inherited Disorders.”

While both germline gene editing and 3-person IVF are technically forms of human germline modification, or the genetic modification of human reproductive cells or embryos, they are completely different procedures.

Gene editing removes, inserts, and/or replaces nuclear DNA sequences in a living organism. Human germline gene editing means changing the nuclear DNA of a human egg, sperm, or embryo. The prospect of using genetic engineering for the purpose of controlling which traits are passed down to future generations has long raised major concerns worldwide. Foremost among these are that 1) this would have unalterable and largely unpredictable biological effects on resulting children and their future offspring; and 2) this would have disastrous social consequences if, as many believe, engineering genes thought of as “superior” exacerbated existing forms of inequality and discrimination.

By contrast, 3-person IVF refers to a range of techniques that don’t alter DNA sequences at all. Instead, they take apart and recombine fragments of reproductive cells in a process that is actually more similar to cloning than to gene editing. The primary goal of 3-person IVF is to prevent the transmission of a small subset (about 15% of cases) of mitochondrial disease, which can be passed from mother to child. In these cases, it is caused by mutations in a cell’s mitochondria, numerous organelles outside of the cell’s nucleus that have their own set of genes. 3-person IVF works not by transferring mitochondria, as the misnomer “mitochondrial replacement” implies, but by transferring the nucleus of an intending mother’s egg (or the nucleus of a fertilized embryo) into a mitochondria-rich donor egg that has had its nucleus removed. Inheriting nuclear DNA from the intending mother and father, and mitochondrial DNA from the egg provider, the child would thus be genetically related to three people. If that child were female, all future offspring would also inherit the changes.

As I’ve written before, 3-person IVF leads us down a slippery slope toward  a wider acceptance of germline gene editing for reproduction. One way to avoid this risk is by recognizing that the two procedures are completely different.

2) There is a big difference between somatic and germline gene editing, and between germline gene editing for research and reproduction

Another common mistake  in the media is treating somatic and germline gene editing as the same, and conflating the different uses of germline gene editing.

In Newsweek's recent cover story, “Gene Genie: Scientists Can Edit Your DNA to Cure What Ails You…Unless you Live in America,” Madhumita Murgia begins with the success story of Layla Richards, the first person cured of leukemia through “gene editing”. But Richards isn’t the main focus of the story. The bulk of the article focuses on gene editing in human embryos. For the casual reader, there is no distinction between the two cases. But that’s the problem.  

Richards’ case refers to somatic gene editing, or gene therapy, which alters the genetic sequences of an individual’s non-reproductive cells in order to treat an existing medical condition. A major concern about using somatic gene editing to treat diseases is ensuring the procedures are safe, effective, and accessible. Earlier attempts at gene therapy, using older genetic engineering techniques, were largely unsuccessful, and, in the well-known case of Jesse Gelsinger, caused a tragic and unnecessary death.

By contrast, germline gene editing refers to editing human reproductive cells or embryos. This poses unique ethical questions because, unlike somatic gene editing, germline changes would be inherited. Germline gene editing thus has to grapple with what these changes mean for a future generation.

A second often-overlooked distinction is the different ways germline gene editing is used: for research or for reproduction.

Germline gene editing for research will not result in a pregnancy; by contrast germline gene editing for reproduction has to account for the future generations that will be affected. Using a genetically altered human embryo to initiate a pregnancy, which would affect the genes of the resulting child and all future generations, is currently outlawed in more than 40 countries worldwide. Widespread international prohibitions on modifying the genes that are passed down through generations were put in place out of concerns about safety, human rights, and the potential for high-tech eugenics. CGS supports a prohibition on all forms of germline gene editing for reproduction.

The Newsweek article is one of a number of instances in which these distinctions have been blurred in the media. Making them clear is crucial to public understanding of the medical, policy, and social implications involved.

3) “Designer babies” remain a serious concern

Several recent articles emphasize that scientists do not yet understand enough about the human genome to begin creating so-called “designer babies,” or children whose genes have been changed to “enhance” them physically or behaviorally (see here, here and here). While this is true, it does not mean that there’s nothing to worry about, or that concern about inheritable genetic modification is a “sideshow” in the CRISPR debate, as Vox recently stated.

As Rob Stein at NPR notes, “The concern here is that if you [edit the DNA of human embryos] for medical research, what’s to stop other scientists to try to do it for other reasons, like, for example, to try to create designer babies that are taller or smarter or better athletes?”

Stein adds that “the concern is that this could open the door to someday creating genetic haves and have-nots.”

This has been a serious concern since inheritable genetic engineering was first imagined. With recent advances in gene editing, it’s true now more than ever. The fast-moving, commercially motivated nature of CRISPR technology means that a world where the affluent can afford genetic “enhancements” is an uncomfortably real possibility. Combined with reporting that most scientists think “editing embryos will probably be a clinical option one day,” broad societal debate about human gene editing and its implications for the future of humanity is urgently needed.

In a world where technologies such as CRISPR have the power to exacerbate social inequalities in unprecedented ways, it is essential that the public understand the nuances of this emerging technology in order to make informed decisions about what we do or do not want for our future. Gene editing for reproduction is a social and political matter, not just a scientific one, and there is simply too much at stake to move forward without broad inclusion of the wider public.   

Previously on Biopolitical Times:

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CGS Board Member Leads Redress Call for California Survivors of Eugenic Sterilization

Posted by Marcy Darnovsky on January 16th, 2017

Book cover of Alexandra Minna Stern's book Eugenic Nation: Faults and Frontiers of Better Breeding in Modern America. Pictured is a geographical view of the United States, overlapped with chromosome painting.

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Scholars researching California’s twentieth-century legacy of eugenic sterilization, led by University of Michigan professor and Center for Genetics and Society Advisory Board member Alexandra Minna Stern, are urging state legislators to consider reparations for survivors of this abusive chapter in California’s history.

An estimated 20,000 people underwent compulsory sterilization in state institutions from 1909, when California passed its eugenics law, well into the 1950s. According to the study published in the American Journal of Public Health, based on painstaking analysis of historical records, the research team estimates that as many as 831 people sterilized under that law are alive today.

“The remaining survivors of California’s eugenic sterilization program deserve further societal acknowledgement and redress,” the researchers wrote.

And the researchers emphasize that “time is of the essence”: According to their estimates, the average age of the survivors is 87.9 years.

“We suggest that interested stakeholders, including public health advocates, legislators, reproductive justice and disability rights activists, and survivors willing to come forward, move quickly to ensure that California takes steps toward reparations and full accountability for this past institutional and reproductive injustice.”

Their efforts aren’t being ignored. The findings have drawn media attention from high-profile outlets including The Atlantic, the New York Times, NPR Weekend Edition, Scientific American, and the Los Angeles Times. Much of the coverage highlights the call for California officials to make serious efforts to identify the survivors and consider offering them monetary compensation. Such reparations programs have been established with bipartisan support in North Carolina and Virginia, which had similar eugenic sterilization programs.

Stern’s research on eugenics has spanned more than a decade. In 2005, she published Eugenic Nation: Faults and Frontiers of Better Breeding in Modern America examining eugenics in the American West. She has continued her work by investigating the race, gender, class, and disability status of California’s sterilization victims; documenting the disproportionate number of patients with Spanish surnames who were sterilized; and focusing on stories of efforts by families and patients themselves to challenge sterilization procedures.

Stern has also worked to bring public awareness to the stories and meanings of eugenics in California. She helped CGS and other organizations plan a 2012 symposium at UC Berkeley Law, Eugenics in California: A Legacy of the Past?, and at San Francisco State University’s Future Past: Disability, Eugenics, and Brave New Worlds event in 2013, and spoke at both.

Stern has also participated in several of CGS’s Talking Biopolitics conversations. In 2013, she and journalist Corey Johnson discussed an episode of sterilization abuse in California women’s prisons between 2006 and 2010 that Johnson had revealed while working with the Center for Investigative Reporting. She joined medical historian Nathaniel Comfort in 2015 to talk about the implications of the quest for “human perfection” in an age of rapidly advancing genetic technologies. And last year, Stern interviewed the producers and director of No Más Bebés, a documentary about immigrant women in Los Angeles who sued county doctors, the state of California, and the US government after they were coerced into sterilizations while giving birth during the 1960s and 70s.

The hundreds of eugenic sterilization survivors in California alone make plain the echoes of America’s eugenic past that still reverberate in the present. Coming to terms with this legacy will serve not just the individuals subjected to eugenic sterilization, but all of us who must confront its continuities today.

Previously on Biopolitical Times:

Image via University of California Press

Biopolitical News of 2016

Posted by Pete Shanks, Leah Lowthorp & Marcy Darnovsky on December 13th, 2016

Colorful graphic of

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The biggest surprise of the year was probably the birth, in Mexico, of a baby who was conceived following controversial mitochondrial manipulation (“3-parent IVF”). The location was chosen by a New York-based fertility doctor who noted that in Mexico “there are no rules.” Since 3-person IVF is technically a form of inheritable genetic modification, one big question is whether its increasing use and normalization will open the door to wider acceptance of gene editing for human reproduction.

The gene editing shockwaves of 2015 – when Crispr was first applied in human embryos, and controversy about the prospect of using it for human reproduction became explicit – developed into a somewhat more predictable flood of activity and comment in 2016. The big, and unfortunate, news here is perhaps the non-news: the absence of any significant efforts to encourage public participation in deliberations about whether powerful new genetic manipulation tools should be used in efforts to control the traits of future children and generations.

The most consequential news of the year for biopolitics as for so much else may well turn out to be the US presidential election result, but the consequences themselves remain somewhat unclear. Trump’s comments about having “the right genes” are ominous warning signs, which are perhaps getting worse, as partly described below.

Cross-border commercial surrogacy was in the news this year because of scandals, disputes, and changes in the laws of several nations where it had taken hold. Commercial pressures were particularly apparent in the slick marketing being used to promote egg freezing among young women with no fertility problems. In California, the fertility industry failed in its effort to overturn the state ban on paying women more than expenses to obtain their eggs for research.

The Center for Genetics and Society (CGS) continues to monitor these and related developments, and attempts to encourage their responsible use and effective societal governance. Many of the following issues inevitably blend into each other, but here is a brief overview of the most important biopolitical developments of 2016, roughly grouped by topic:

3-Person IVFlack and white photo of an adult holding a baby in their arms.

This year saw the highly controversial move of experimental 3-person in vitro fertilization (IVF), also known as mitochondrial manipulation, mitochondrial replacement, and nuclear genome transfer, from the lab to the clinic.

The year began with a U.S. National Academy of Medicine report on the ethics of using 3-person IVF for the purpose of preventing mitochondrial disease. The committee decided that the procedure should be ethically permissible under certain conditions, among them a restriction to implanting only male embryos in order to limit risks to future generations. The report acknowledged that 3-person IVF “does not address a medical need” as it “would not treat an existing person for a disease, illness, or condition.”

The UK’s Human Fertilisation and Embryology Authority (HFEA) released a report based on its scientific review of the procedures, and rejected the male embryo limitation. The HFEA will consider approving 3-person IVF for clinical use on December 15.

In May a phenomenon was discovered that might prove to be a roadblock to using 3-person IVF to prevent the births of children affected by mitochondrial disease. The issue is that at least in some cases, carried-over “faulty” mitochondrial DNA (mtDNA) multiply faster than donor mtDNA, eventually taking over the donor egg and thus defeating the purpose of the risky procedure.  

In the last quarter of 2016, the world witnessed a series of shocking developments in multinational rule-evasion surrounding 3-person IVF, with the first child born in Mexico to dodge the ongoing regulatory process in the US. Other pregnancies were subsequently reported around the world (see here and here). The clinic that delivered the first baby in Mexico has reported plans to use 3-person IVF in 20 pregnancies in the first half of 2017.

Within a few short months, we have seen a slippery slope unfold right before our eyes from use of the experimental technique to prevent the births of children with mitochondrial disease to its use to treat infertility.

Gene Editing for Reproduction
acial features of young baby are shown, with transparency of genetic c

In April, researchers in China attempted to enhance nonviable embryos with limited success. Another team in Sweden was revealed to be working in the same area, but on viable embryos. The UK authorized gene-editing experiments on potentially viable embryos, to be destroyed after seven days of development. Later in the year, scientists in the UK urged extending the legal limit of experimental development of human embryos from 14 to 28 days, which may be considered next year.

This and other gene-editing debates, particularly including those around human germline modification, percolated through the press. This collection of magazine covers makes the stakes of the controversy clear. The Spectator, a British publication, was perhaps the bluntest: Its cover announced that “Eugenics is back.”

Given the magnitude of its consequences, it’s no surprise that we saw heated debate in the news media about the prospect of human gene editing for reproduction. Key 2016 articles and commentaries, and the year’s Biopolitical Times posts on the topic, are collected on the CGS website resource page about human germline editing.

The National Academies of Sciences’ committee on human gene editing held several public meetings this year, and publication of its “consensus study” is expected early next year. In the UK, the Nuffield Council issued Genome Editing: an ethical review, which is likely to be useful resource for future discussion.

The battle over Crispr patents provided a side-show throughout the year. Time magazine tactfully lumped “the Crispr pioneers” together on its short list for Person of the Year (which went to Trump). The legal decision may come next year.

Meanwhile, at the end of the year, a new scientific report pinpointed multiple anomalies that lead to the long-documented failure rate of clones, specifically in cows. This understanding might possibly lead to improvements (not immediately) but the authors stressed “the need for a strict ban on human cloning for any purposes.”

Egg RetrievalA woman in a polka dot blouse lounging on a couch looks directly in the camera with the text "Hey, how's your fertility doing?" in bright font.

The risks and realities of egg retrieval procedures seemed to attract a bit more media attention this year, though the stories in two top US newspapers ran with headlines in the form of questions: Do women who donate their eggs run a health risk? in The Washington Post and Should young women sell their eggs? in The New York Times. Both stories mentioned the organization We Are Egg Donors, profiled here, along with other prominent critics, some of whom issued their own call to protect the health of women undergoing egg retrieval. A sharp increase in serious short-term complications of egg retrieval in the UK, where such data is at least collected, also made news.

Health risks are, of course, a concern whether the eggs being harvested are destined for the provider’s own pregnancy attempt, for donation or (far more often) sale to someone else, or for the freezer. The push for egg freezing continued apace in 2016, with slicker marketing  and dedicated cocktail parties by start-ups in the US and public subsidies in Japan in a misguided effort to boost its falling birth rates. Debate about the risks and effectiveness of egg freezing also persisted. On the distribution side of the business, freezing means that eggs are now part of a “hidden global supply chain” that also includes frozen sperm and embryos.

Additional demand for eggs came from researchers who want them as raw materials for their work. In California, researchers can reimburse women for expenses related to the retrieval procedure, but can’t pay them beyond that. A repeat attempt to overturn that rule, sponsored by the fertility industry, failed again this year after indications that Governor Jerry Brown would again veto the bill, and in the face of opposition by CGS and other social justice organizations.

A heternormative couple looks down at the ground, which features a world map of 7 continents.

While it’s no longer news that contract pregnancy is a global phenomenon and a booming transnational business, headlines about the twists and turns of commercial surrogacy continue to appear. One media theme in 2016: the shifts in the laws of several countries that have decided to resist the spread of cross-border commercial surrogacy. At the beginning of the year, the global surrogacy industry began moving into Cambodia after prohibitions or restrictions were established in India, Nepal, Thailand, and Mexico. Before long, headlines began remarking on the Dwindling Options for Surrogacy Abroad; by year’s end, Cambodia too had banned commercial surrogacy.

Another major media focus featured disputes among parties to surrogacy arrangements, and scandals of varying types and magnitudes. One of this year’s stories – headlined Surrogate mother who sold same babies twice sentenced for fraud – was about a French woman who told one set of commissioning parents that the child she had been carrying for them was stillborn, and made a deal for the baby with other parents. Another case pit a 47-year-old woman pregnant with triplets against their intending father who said he couldn’t afford to raise three children, mixing the politics of abortion into the controversy about commercial surrogacy. Other accounts surfaced about children born via surrogacy who have been abandoned by commissioning parents because of what some news coverage called “defects,” echoing 2014 headlines about “Baby Gammy.”

Media reports about inter-country surrogacy as a lucrative business, or about the financial implications for those involved, were less common. A couple of stories did note the spike in demand for surrogacy in the US and in Japan by wealthy Chinese couples after China lifted its one-child policy. Another presented evidence that many Indian women who have worked as surrogates to improve their family’s standard of living wind up with “little to show for their efforts.”

All of these issues and more were discussed this year at a number of reproductive rights and justice meetings, including the Baby Markets 10th Anniversary International Congress, Making Families: Transnational Surrogacy, Queer Kinship, and Reproductive Justice, and Inter-country medically assisted reproduction: Conceiving a human rights ethic of care.

Stem Cells

For a while, this seemed to be the year in which stem-cell scams finally got the attention they deserved, thanks mostly to stem-cell researcher Paul Knoepfler and bioethicist Leigh Turner of UC Davis and the University of Minnesota respectively. They identified 570 clinics around the country, most of which were selling unapproved procedures. The initial media reaction was shock, and there was some hope that the FDA would enforce strict new guidelines

Unfortunately, the “21st Century Cures Act,” which President Obama signed into law on December 13th, was a major blow to the FDA’s system of clinical trials, and the Trump administration seems likely to promote “use at your own risk” treatments.

Moonshots & Medicine
llustrated image of a scalpel instrument.

President Obama, who in his 2015 State of the Union proposed a Precision Medicine Initiative, in his 2016 message announced a Cancer Moonshot, inspired by Vice President Biden, whose son died of brain cancer. With unusual swiftness, a Task Force was created, headed by Biden, and produced an ambitious report. The recommendations in the report were largely funded by the 21st Century Cures Act.

Big data is an important part of these initiatives, and federal funding is beginning to flow. How effective personalized medicine will be remains somewhat open to question, both scientifically and because people are, well, cantankerous: studies are beginning to show that gene testing does not much influence behavior.

Synthetic Human Genome?

Saving the worst for last, 2016 saw a serious proposal for “HGP-Write” — the creation of a human genome from scratch. This was most thoroughly discussed at a closed-door, invitation-only meeting at Harvard in May that turned out to be something of a public relations disaster. But this work is certainly progressing, and it would not be surprising if some of the funding were secret.

Images via Pixabay

Slippery Slopes and Biological Curve Balls: Updates on 3-person IVF

Posted by Leah Lowthorp on December 13th, 2016

Black and white image of woman's silhouette looking at her phone while pushing baby carriage in a European city

In September the world learned of a US fertility doctor who had gone to Mexico where “there are no rules” in order to arrange the birth of a child conceived using 3-person in vitro fertilization (IVF), technically a form of human germline modification, to prevent mitochondrial disease. In October we learned that 3-person IVF is being used experimentally in the Ukraine to treat infertility.

In November we saw four additional important developments:

1) The media got 3-person IVF all wrong

On November 1, Reproductive Biomedicine Online published “Setting the Record Straight,” the journal’s editorial response to the “shoddy scientific journalism” surrounding an article in the very same issue. The article in question was a report on the apparent health of children born in the late 1990s and early 2000s using cytoplasmic transfer, a 3-person IVF precursor (see here for CGS’s take on the media coverage of that article). Published in the immediate aftermath of the Mexico and Ukraine cases, most media reports took it as evidence that current 3-person IVF techniques (pronuclear and spindle transfer) are safe. Railing against this misinterpretation, the editor argues that:

the technique of cytoplasmic transfer in the late 1990s is so different from those of pronuclear or spindle transfer as to make the apparent normality of the offspring born through the former technique of little relevance in the context of (the latter).

In other words, the media got it all wrong—the study doesn’t prove anything about the current or future safety of experimental 3-person IVF techniques.

2) Slippery slope: Disease prevention to fertility treatment

With all focus in September on the use of 3-person IVF to prevent mitochondrial disease, the slippery slope toward the multi-billion dollar fertility industry and a potential normalization of human inheritable genetic modification is unfolding right before our eyes. On November 10, a study co-authored by Shoukhrat Mitalipov, who has developed and promoted one of the 3-person IVF variations, was published in Stem Cell proposing the introduction of 3-person IVF technology as a fertility treatment. Characterized by one of the co-authors as “just one additional advance over IVF,” the new study promises a two-for-one deal for aging women to “increase the yield … available for transfer from a single stimulation cycle.”

As opposed to other 3-person IVF techniques that transfer the nucleus from an intending mother’s egg into a donor egg from which the nucleus has been removed, the new variant would use the genetic material from an intending mother’s polar bodies, small cells produced during oogenesis that contain nuclear DNA but that typically don’t develop into eggs that can be fertilized. Reconstructed eggs generated with this so-called “polar body nuclear transfer” technique would pose as much risk to any resulting child as other 3-person IVF methods, and the overt shift toward using such a biologically extreme procedure to address basic infertility is deeply troubling.

3) Moving ahead at all costs

On November 30, the UK’s Human Fertilisation and Embryology Authority (HFEA) released their Fourth Review by an independent panel of experts, examining the safety and efficacy of 3-person IVF techniques for the purpose of avoiding serious mitochondrial disease. The review recommends “cautious use” of these techniques for “carefully selected patients” in cases “where there are no acceptable alternatives” such as pre-implantation diagnosis (PGD), and supports mitochondrial DNA (mtDNA) haplotype matching as a precautionary measure. It concludes that reversion, the phenomenon whereby carried-over “faulty” mtDNA multiply faster than donor mtDNA and eventually take over the donor egg, does not pose a serious risk despite evidence to the contrary. It also rejects a U.S. National Academy of Medicine report that recommends limiting clinical research to the transfer of male embryos so as to avoid inheritable genetic modification, and emphasizes the importance of long-term follow-up.

The Science Media Center issued a collection of expert reactions to the review the same day that was predominantly celebratory. Dr. David J. Clancy of Lancaster University, however, strongly questioned the panel’s seeming impetus to move forward at all costs, even in light of serious ongoing safety concerns. He wrote:

[3-person IVF]’s sole benefit is to allow affected women to have healthy children who bear half their genes. The best alternative is IVF by donor egg... [T]he evidence now suggests that, at some point, producing a child who will suffer from mitochondrial disease is a certainty. Are we, as a society, OK with that?

The HFEA is set to consider the issue at a meeting on December 15.

4) A biological curve ball

Also on November 30, another study co-authored by Mitalipov was published in Nature that suggests that reversion (see #3 above) is a serious problem related to “mismatches” between the mitochondrial DNA of the intending mother and that of the egg-provider. The authors propose an as-yet-tested system of mtDNA replication-rate matching that would allow the egg provider’s mitochondria to remain dominant in the developing embryo. Karen Weintraub’s coverage in Scientific American recognized the hurdle this poses for clinical uses of 3-person IVF technology, describing it as “a biological curve ball” that shows that mitochondrial diseases “can come back to sicken a child, even when 99 percent of the mother’s own mitochondria are eliminated.” Most media reports, however, managed to spin this setback as progress (see here, here and here).

Within the span of only a few short months, we have seen a disturbing trend toward the normalization of an experimental technology that is still widely considered unsafe, and whose implications for future generations are yet unknown. CGS and others have criticized the clinical application of 3-person IVF, even to prevent the transmission of mitochondrial disease, because of the potential serious health consequences for resulting children and future generations, because safer options for creating families are already available, and because allowing mitochondrial manipulation in humans could open the door to other forms of human inheritable genetic modification, banned in more than 40 countries worldwide. 

Previously on Biopolitical Times:

Image via Pixabay

Trump, Science and Social Justice

Posted by Pete Shanks on December 8th, 2016

President elect Trump is standing at a podium, looking above.

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It has not escaped our notice that the specific process we have witnessed in the last month immediately suggests a possible alteration of the regulatory and ideological landscape. As with genomics, however, the devil is in the details and many of them remain obscure. Some general outlines have emerged, and they are frightening to anyone who cares about social, economic or environmental justice.

It seems certain that the Electoral College will confirm Donald Trump as the winner of the Presidential Election, although a few “faithless electors” might cast protest votes. It is absolutely certain that Hillary Clinton won the popular vote; at this writing, she is leading by 2,7 million votes and seems likely to have attracted more votes than any Presidential candidate in history except then-Senator Obama in 2008. Nevertheless, Trump and Vice-President-elect Mike Pence are not only claiming a mandate, they are backing their talk up with extraordinarily reactionary appointments.

In part, this may be down to Trump’s inexperience: He seems to be picking people he knows. And GeneralsReuters is running a list of top appointments, and Nature had a useful summary of possible science-related appointees last week. But what other criteria does he have?

Eugenics, apparently:

All men are created equal; well, it’s not true, ’cause some are smart, some aren’t. …  You have to have the right genes. … I’m a gene believer … I'm proud to have that German blood. There’s no question about it. Great stuff.

And white supremacy. Of course, that is denied, for instance by a founder of The American Conservative:

The United States is entering into [a] period of demographic transformation, where whites, politically and demographically dominant for all of the nation’s history, will become a smaller majority, and perhaps then a plurality. Whether this transformation will be assimilative or anti-white, peaceful or violent, remains to be seen. Those in the upper reaches of the Democratic Party throwing around loose charges of “white supremacism” are certainly doing nothing to make it go smoothly.

So what’s the nice, polite way to describe Steve Bannon, set to be Trump’s Senior White House Counselor, and former chairman of what the Southern Poverty Law Center has called a “white ethno-nationalist propaganda mill”? The New York Times gave it a go:

Mr. Bannon is in some ways a perplexing figure: a far-right ideologue who made his millions investing in “Seinfeld”; a former Goldman Sachs banker who has reportedly called himself a “Leninist” with a goal “to destroy the state” and “bring everything crashing down.” He has also called progressive women “a bunch of dykes” ...

Nope, can't be done.

But science, of course, is politically neutral. (Just the facts, ma’am.) So it should not be a concern that the Environmental Protection Agency will be run by a “close ally” of the fossil fuel industry, Scott Pruitt. Or that the Health and Human Services Secretary, Tom Price, has been focusing for years not just on dismantling the Affordable Care Act but also barring funds for Planned Parenthood; and opposing abortion. Or that running the Centers for Medicare and Medicaid Services will be Seema Verma, a close advisor of Pence, who worked to make Indiana’s Medicaid plan "one of the most punitive in the country.” 

It could get worse. The Food and Drug Administration may go to Jim O’Neill, a colleague of the execrable Peter ThielBloomberg notes:

O’Neill also could push the agency in new directions. In a 2014 speech, he said he supported reforming FDA approval rules so that drugs could hit the market after they’ve been proven safe, but without any proof that they worked, something he called “progressive approval.”

What could possibly go wrong? (Don’t all speak at once.) We should note that this is apparently a trial balloon. Scott Gottlieb of the American Enterprise Institute is said to be the other candidate. He has some FDA experience, under George W. Bush, but the editor of the New England Journal of Medicine said in 2005:

Gottlieb has an orientation which belies the goal of the FDA.

A quick glance at his Forbes columns shows he really hasn’t changed. But he regularly appears on Fox News, so Trump may know who he is.

The Union of Concerned Scientists are concerned enough to organize a 2300-signature letter, supporting “unfettered science.” Heads of 29 scientific societies (including the AAAS) politely called for a meeting to advise Trump. Another ad-hoc group of scientists called “Not Who We Are” has their own open letter, with climate scientist Michael Mann at the head of the list of signatories. They are all right, of course, but may be, um, waving into the wind.

To be fair, as we must, there is one surprising suggestion: Four key Republicans in Congress, all chairs of committees or important subcommittees, sent a letter to Trump urging the President-elect to keep Francis Collins as Director of the National Institutes of Health. Since Collins is a gentleman, there is no word of this on his blog or Twitter feed. But really, why would he need the grief?

Update: Francis Collins said on Friday, December 9, that he was flattered by the letter and would consider it a privilege to remain in his post.

Previously on Biopolitical Times:

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Review of Blame: A Novel

Posted by Abby Lippman, Biopolitical Times guest contributor on November 28th, 2016

Book cover of Blame by Tony Holtzman. Black and white illustration, in bird's eye perspective, of a maze with mice.

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Because it is a central theme of this novel, it seems appropriate for me to start this review with my own “conflict of interest” – or as I prefer to see it, my “competing interest.” So I note that my parents and Tony's parents were friends when we were young children and though he and I were never friends, we were colleagues in adulthood insofar as we attended the same medical/human genetics meetings and conferences and kept in touch with our separate critiques of these issues, even discussing them, when we met.

Readers, therefore, can make their own assessments of my comments about Blame as to whether or not they are “fair” or even unbiased. Readers should also know that though I have a long history of writing and publishing book reviews, both in print and online, with only one exception these have been works of non-fiction; critiquing a novel is something I vowed not to do once the first was complete, but here I am....

Enough about me; the book is what is important here, and it is an important book – especially for those who are not trained in or otherwise familiar with human/medical genetics and the range of ethical, social, legal, and political issues raised by the applications of what is learned in a lab. It is a novel of fiction and a novel of science, often eerily portraying not only what is happening now but what is possibly very soon to come as new technologies are normalized, “monetized,” and enter “ordinary” medical practice.

Blame is fueled by these issues, with the characters propelled by the concerns raised and their own ambivalences about what is “right” and useful to do. It is a kind of hybrid book, combining an introduction into the intrigues of (and intriguing nature of) genetic research with a compelling story of (some) good people who go – and are led – astray. Thus, while the characters are well-limned, they can at times seem to represent an issue at least as much as appear to be fully-fleshed individuals.  

As a result, the reader may feel, as I did, deeply drawn to but still hungry to know more about the central figure and his wife, in order to better understand just why he (a solid scientist doing careful research) and she (a strong woman with feminist leanings) do what they do. Unfortunately, to provide details here would likely give more away what readers should better discover for themselves. 

Watching the characters who incarnate a range of roles (investigative journalist, African-American woman harmed in a commercially-funded clinical trial, university administrators and faculty, et al.) also affects us strongly on gut levels but can nevertheless sometimes seem forced to meet Holtzman's political agenda when the latter is given priority over the deep development of characters per se.  Why do some key players make the turns in behavior and in practices that they do? Hubris? Insecurity?  Money? Love? All are at play, and we don't necessarily need these all spelled out. Yet while it's very clear that the central characters do change, it might enrich the novel if the why of this was easier to sense without feeling that some turns are plot-driven to make a point. 

But despite these quibbles, no doubt the book is a page-turner and the reader is driven along.

There is also no doubt that Holtzman has a stand on the issues he raises, a stand I probably almost entirely share with regard to the evils of profit-driven science, the corruption of academia and corrosive effects on science (and people and relationships) that ensue, the hyped promises of predictive medicine, the dilution of fully informed consent, and the lingering oppression of societal racism. He brings all this, including their historical grounding, into the novel with clarity and expertise.  And accompanying all this are generally easily digested details of genome analysis, medical interventions, and other “science” matters. As background these are essential elements of Blame; however, when these are foregrounded, they risk becoming ersatz major “characters.” This, in turn, can make some of the fictional people simply potential “issue-bearers,” embodiments, that is – but possibly with bodies that are thinner-than-needed to fully satisfy a reader.

Because it is a challenge for a reviewer to talk of the actual “plot” of the book without revealing its  ending, and wanting not to spoil the experience for readers, I will only note that there is lots here to keep a reader engaged and turning pages, perhaps even in one sitting. Blame is properly titled; much and many bear this load in the novel's exploration of how genetic testing of asymptomatic people can reveal DNA patterns suggestive of the later appearance of highly undesired diseases (in this book Alzheimer); of how lucrative for companies it can be to patent these DNA segments/patterns for the commercial development of tests they can sell; etc. To this are added references to other sources of blame: past racist research, sexual harassment, spousal violence, the lifestyles of rich and privileged whites in the US, inadequate even lax regulations and laws related to genetics and genetic technologies in law and legal regulations....a full set of the blameworthy from which to choose.

This book is as important to read and then discuss with others to foster the important public input into  decision-making re how genetic technologies are developed, funded, used, provided, and governed, as it is to read simply for oneself: it will surely give everyone several hours of pleasurable page-turning. I hope these two “applications,” the collective and the private, will merge– and Blame will be an essential basis for this merging as science continues to seek ways to read our futures and to extend lives. While a work of fiction, Blame is definitely not science-fiction.

Abby Lippman has spent decades following developments in applied genetic and reproductive technologies. Her main interests as a feminist researcher, writer and activist center on women's health and the politics of health. She is also Professor Emerita in the Department of Epidemiology, Biostatistics and Occupational Health at McGill University.

Image via Cloud Splitter Press

7 Highlights from Nuffield Council’s Review on the Ethics of Genome Editing

Posted by Jessica Cussins, Biopolitical Times guest contributor on October 18th, 2016

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The UK Nuffield Council on Bioethics’ recently released report, Genome Editing: an ethical review  (full version available here) is the most substantial and thorough assessment of its kind. It delves deeply into the ethical, social, and political underpinnings and implications of genome editing, and touches on related, converging technologies including synthetic biology, gene drives, and de-extinction. A second report with ethical guidance regarding the use of genome editing for human reproduction is due in early 2017 from a Council working group chaired by Karen Yeung

This first report will be an important reference for people across disciplines for some time, and I will not do justice to its scope and breadth here. However, I want to draw attention to just seven concepts that are particularly helpful and illuminating, as much for their framing of the questions at stake as for their content. I briefly summarize each point, and select key quotes from the report.

1. On emerging technology and innovation

Contrary to frequent assumptions, innovation in science and technology is neither linear, autonomous, nor pre-destined. It is continuously co-produced in relation to a complex intersection of actors, institutions, market-drivers, and serendipity. Momentum and sunk costs can however encourage adherence to certain technological pathways, meaning the choice of paths we take should not be undertaken blindly, or lightly.

“A commonplace but now largely discredited perspective viewed science as a resource from which innovators draw, leading to new technological innovations that provide social or commercial benefits, such as increased wellbeing and productivity. The flaws in this ‘linear model’ are generally thought to stem from its failure to give due attention to the complexity of innovation processes, the importance of feedbacks, the role of markets and other actors, and the effects of uncertainty and serendipity. Science now tends to be seen less the wellspring of technological innovation than a ‘co-producer’ along with these other forces and actors.” (15)

“The factors that act to attract, secure and consolidate investment may also have the effect of confirming a course for innovation, creating both ‘lock in’ of contingent technological forms and forward momentum along a particular technological pathway. The reasons for this include factors such as sunk costs, learning effects, increasing returns to scale, high transaction costs associated with any change of direction and the mutual adaptation between technologies and associated conditions of use, including the structure, governance and practice of institutions, and not excluding social conditions, normative rules and standards, and public acceptance.” (18)

2. On the “editing” metaphor

Discussion of “genome editing” as opposed to “genetic modification” or “genetic engineering” has a re-framing effect that serves to distinguish the newer technological capabilities as more “precise,” as well as to diminish their consequences by avoiding connotation with such loaded terms as “GMO.” The “editing” metaphor instead conjures images of easily altered language or computer code.

“Whether intentionally or not, the ‘editing’ metaphor distinguishes the approach from less ‘precise’ forms of genetic ‘engineering’ and, simultaneously, distances it from their associated connotations, including the range of public responses that these terms typically excite. The editing metaphor also plays on characterisations of the genome as the ‘book of life’ containing ‘sentences’ (genes) made up of a ‘genetic alphabet’ of four ‘letters’ (A, C, G and T, the initial letters of the four chemical bases comprising DNA) that were common around the time of the Human Genome Project. The editing metaphor transfers easily to the more contemporary image of modifying computer code. The metaphor suggests not only the type but also the significance of the intervention: it is technical, is not dependent on scale (as it applies equally to changes large or small) and is seen as corrective or improving (at least in relation to the editor’s vision).

“In this way, the concept of editing has a certain thickness, whereby, while apparently descriptive, it implies a tacit evaluative judgement. It also implies an editor (the one who does the editing) and, by deeper implication, may distinguish the editor, who merely corrects and improves, from a putative, creative ‘author’. But whether authorship is assigned to a divinity or not, the implication is that the work of editing is trivial in comparison.” (19-20)

3. On the public interest

Science and technology are intimately connected with the public interest. They are forged through public funding and support, and they act upon and within the world, with impacts on the well-being and welfare of the public. 

“There is a public interest in research for at least two main reasons. The first is to the extent that a great deal of research in the academic sector is publicly funded, from money collected through general taxation. This implies a public interest in the fact that this money is spent in a way that reflects public priorities and pursues them with the greatest possible efficiency. The second, more profound, reason is that products and practices, processes and tools produced by the application of knowledge gained through research may have a direct or indirect impact on the wellbeing and welfare of the public (including their moral and social welfare). The public have an interest in science, in terms of its expectation of net social benefits, and invests in science both financially and through the trust placed in scientists to contribute to the delivery of these benefits. But more profoundly than this, the public have an underlying public interest in the overall moral and ethical texture of the society in which they live. How technologies like genome editing are taken up and regulated both reflects and influences the broader moral values on which common social life is based and the social meaning of the practices in question.” (21)

And, quoting from Sheila Jasanoff’s article “Technology as a site and object of politics”:

“…technology, once seen as the preserve of dispassionate engineers committed to the unambiguous betterment of life, now has become a feverishly contested space in which human societies are waging bitter political battles over competing visions of the good and the authority to define it. In the process, the virtually automatic coupling of technology with progress, a legacy of the Enlightenment, has come undone. Uncertainty prevails, both about who governs technology and for whose benefit. No matter which way one looks, the frontiers of technology are seen to be at one and the same time, frontiers of politics.” (21)

4. On normality, moral norms and rights

Should we judge what constitutes an acceptable or unacceptable biological intervention using a concept of what is “normal?” What would that mean and who would decide? What lessons must we heed from 20th century eugenics programs about desires to direct humanity?

“While nature contains many prodigies, the normal can serve to orientate moral action (for example, in terms of whether that action tends to support what is regarded as normal functioning or produce divergence from it). What counts as normal is therefore a legitimate question but often one that is highly contested with regard to the extent to which norms are related to natural states or socially constructed, particularly in relation to issues of disability, medical intervention and enhancement. Disability justice and rights scholars have made a range of moral arguments against selective technologies, from individual rights based arguments such as the right to life of people with disabilities, to arguments for the social and emotional value (e.g. vulnerability to contingency) of biological difference, to the value to humankind of conserving disability cultures, and the importance of the visibility of disability in establishing social attitudes, behaviour, and structures.” (28)

“A particular concern that has been raised is that genome editing combined with social liberalism may facilitate the ‘consumerisation’ of human biology, and the spread of ‘consumer’ or ‘liberal’ eugenics, driven by the choices of parents rather than by state policy, but with possibly similar, socially divisive results. Objections here concern the practice as well as the consequences: that the biological conditions of human existence should not be the subject of choice since they allegedly interfere with identity of the person in morally significant ways.” (52)

5. On social justice and a just society

The advantages and opportunities of science and technology in general, and of genome editing in particular, may not be fairly distributed among different groups, different nations, or across generations. Developments cannot therefore be seen outside of the context of social, intergenerational and global justice. 

“Such concerns require us to attend to the need to ensure that measures (such as the introduction of a new biotechnology) that affect welfare do so without discriminating unfairly among people. Although people may be equal in dignity and the enjoyment of rights, they are not equally situated with regard to the benefits and harms of biomedicine and biotechnology. Certain people may be disproportionately affected, may find themselves (perhaps involuntarily) in circumstances that render them particularly vulnerable, or be excluded from access to decision making or to benefits that are available to others. As a result, they may experience unfair discrimination and systematic disadvantage. It is argued by many that dignity and rights discourse is, in fact, insufficient to ground socially just action and that a specifically social justice perspective is called for: they consider it to be essential to put in place means for tracking social justice outcomes over time, and social justice goals in regulation of genome editing technologies.” (29-30)

6. On public policy

Public policy initiatives around genome editing are high-stakes, representing a collective vision of a desirable future, and determining those actions deemed unacceptable to the public interest. Public policy is both reflective of and impactful upon the society in which it functions, and in the world at large.

“As well as forestalling or redressing unjust treatment of individuals, public policy measures both reflect and affect the kind of society in which they are implemented, including the relationship between public and private, how and to what extent different groups and members participate in social life, how different priorities, preferences and values are resolved or tolerated, how equal or unequal in power, status and wealth its members are, and how open or closed the society may be. The features of any society are complex, interdependent and dynamic, but public policy measures often imply and express consistent common values and may be articulated around a collective vision of the desirable future state that they are expected to contribute to bringing about. These, in turn, influence the behaviours, institutions and culture of the society, for example whether it is welcoming or hostile to difference in terms of ethnicity, belief, appearance or ability.” (30)

7. On looking forward

Genome editing is a new development that has garnered enormous excitement. It is important to discuss the impacts of this disruptive new technology, but it will also be useful to avoid inevitability arguments, sky-high expectations, and to remember that it is just one element of a number of larger converging technologies. Future discussions would benefit from beginning with real human challenges or problems, rather than with a technology for its own sake.

“It should be remembered that most prospective technologies fail, and that some lead to undesirable consequences, a fact often obscured by ‘whig’ histories that reconstruct the history of successful technologies and their beneficial social consequences. Scientific discovery and technological innovation is important but not inevitable. Most important among the factors shaping technological development is human agency. It is human agency, in terms of decisions that are made about directions of research, funding and investment, the setting of legal limits and regulatory principles, the design of institutions and programmes, and the desire for or acceptance of different possible states of affairs, that will determine whether, and which, prospective technologies emerge and, ultimately, their historical significance.” (112)

“We are convinced that it makes little sense to treat the questions raised by genome editing as if they belonged to a single field (a hypothetical discipline of ‘genome editing studies’). Rather, they should be addressed as part of different technology convergences (e.g. with ART, with gene drives, with agricultural technologies, etc.), which also includes political technologies (regulation, legislation, etc.). But, more than that, we conclude that it is not the scale at which questions are posed but also their orientation that is important. Beginning with questions about what can be achieved at the genome level risks reducing all questions to ‘ELSI’ questions (questions about the ethical, legal and social implications of genome editing, as if that were the only or most obvious pathway available to address a complex set of real world challenges) and leaving questions about the appropriateness of genome technologies in any given case unaddressed. This is why the next, normative, phase of our work should begin with problems or challenges (and the potential diverse framings of those challenges), rather than technologies, and adopt a comparative methodology.” (115)

Previously on Biopolitical Times:

Image via Nuffield Council on Bioethics

CRISPR Embryos at Karolinska: Controversies Demand Oversight

Posted by Elliot Hosman on October 7th, 2016

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Rumors have been circulating since 2014 about various research teams around the world applying the genetic engineering tool CRISPR-Cas9 in human embryos. Surprisingly, only two experiments have been officially reported in scientific journals—both of them in nonviable embryos incapable of being used for reproduction, and both out of Guangzhou, China.

CRISPR in viable human embryos

On September 22, NPR’s Rob Stein reported an exclusive look inside the Karolinska Institute in Sweden at ongoing but previously undisclosed work using CRISPR in viable human embryos. Stein had traveled to Stockholm to interview researcher Fredrik Lanner and his colleagues about their program of injecting CRISPR into viable human embryos to “knock out” genes potentially linked to early development. NPR quoted CGS executive director Marcy Darnovsky who cautioned:

It's a step toward attempts to produce genetically modified human beings. This would be reason for grave concern. … If we're going to be producing genetically modified babies, we are all too likely to find ourselves in a world where those babies are perceived to be biologically superior. And then we're in a world of genetic haves and have-nots...

The next day, Hank Greely, director of the Center for Law and the Biosciences at Stanford University, told Eric Niiler in Seeker that there is “good valid medical use” for basic scientific research using CRISPR in embryos, but followed that with a warning:

Still, Greely acknowledges that some scientists or the public might say that the Swedish experiment could be an ethical "slippery slope" toward a gene-edited human. “Even if you don't intend to, it makes it easier for someone else to do it,” Greely said.

Rogue actors: “Bioethics, get out of the way”

While many scientists, scholars, legal experts, and public interest advocates oppose using human gene editing for reproductive purposes, others question why anyone would dare stand in the way. There are longer and shorter answers. Our knowledge of both CRISPR and genetics/genomics is poor—not  just on its own terms, but also in relation to other spheres of knowledge, particularly the ways in which they each interact with evolution, environments, public health, and social justice. For the foreseeable future, it would be reckless for a scientist to implant CRISPR-injected embryos for pregnancy not only because of serious safety concerns, but also in terms of democratic governance—especially given the select echelons to which most of the debate is currently restricted, and the range of social and political threats that genome editing poses to the human species.

In Seeker, legal scholar Rosario Isasi of the University of Miami voiced concern about edited human embryos being misused to produce genetically modified humans.

What are the oversight and controls to prevent this technology from being misused and go to a stage that, for now, the scientific community has agreed is a no-go?

In the italics (added) above, Isasi refers to the concluding statement from the International Summit on Human Gene Editing in D.C. in December 2015, in which the organizing committee argued:

It would be irresponsible to proceed with any clinical use of germline editing unless and until (i) the relevant safety and efficacy issues have been resolved…and (ii) there is broad societal consensus about the appropriateness of the proposed application.…any clinical use should proceed only under appropriate regulatory oversight.

Ensuring that researchers work within the bounds of existing national and international prohibitions against heritable genetic modifications in early human cells can be difficult when: (1) commercial and reputational incentives interfere, and (2) rogue scientists exploit basic research for socially and scientifically unsafe ends. Isasi noted in Seeker that the Karolinska Institute has been the venue of an ongoing controversy involving Paolo Macchiarini, a stem cell researcher whose implants of artificial trachea into people led to deaths between 2012 and 2014. Isasi asked:

How did they supervise that [artificial trachea] research, which makes me wonder, what mechanisms were in place to oversee this (gene-editing) proposal [?]

Concerns about end runs or misbehavior by individual scientists have recently grown. On September 27, the news heard ‘round the world was that a fertility doctor based in New York City went to Mexico to use scientifically controversial mitochondrial manipulation techniques to produce a child from an embryo engineered from the DNA of three people. New Hope Fertility Clinic’s John Zhang will take the stage and present the methods used to produce this “three-parent baby” at the upcoming conference of the American Society for Reproductive Medicine, the trade organization for fertility practitioners. The scientific portion of the annual meeting this year is aptly titled: "Scaling New Heights in Reproductive Medicine". It will be instructive to see whether Zhang is met with applause for his “disruptive” and “innovative” foray, or whether his colleagues will criticize the ways he short-circuited public policy and democratic discussions of emerging biotechnology regulations.

Clear boundaries - for some

In an interview with Paul Knoepfler, Lanner noted the existing Swedish policy against using modified embryos for pregnancy:

Swedish law is clear that genome editing is only allowed within the first 14 day[s] as long as the embryo is not transferred back for a continued pregnancy. This means that heritable genome editing for clinical purposes would not be allowed in Sweden. The clear legislation has been key in us moving ahead with these plans…. I’m actually pretty skeptical that the technology will be used for genome editing in the early embryo anytime soon.

The situation in China is different. While that country has regulations that would technically ban gene-edited embryos being used for pregnancy, it is unclear whether these regulations are enforced. On September 24, news emerged out of China that a CRISPR testing facility for genetically modified animals was under scrutiny for “faking inspection records and using students instead of certified technicians to conduct tests.” The testing center was established by the Chinese Academy of Agricultural Science, whose website lists partners including the Gates Foundation and UC Davis. It is a subsidiary of the Chinese Academy of Science which co-sponsored last December’s International Summit on Human Gene Editing with the U.S. National Academies and the UK’s Royal Society. Chief researcher Huang Dafang noted:

The incident has exposed management problems of some similar institutes, and serves as a warning…

Where does that leave the U.S.?

Many across the spectrum of opinion have noted the alarming speed with which CRISPR is being applied in research labs, including to human embryos, outside public scrutiny. Absent consistent laws or guidelines, many are concerned that rogue researchers may conclude that it is “safe enough” to implant edited embryos for pregnancy.

Given the competitive pressures in the world of science, the commercial incentives to be “first to market,” and the forum-shopping inherent to today’s biomedical enterprise, the “three-person IVF” child born in Mexico is a cautionary tale. Someone, somewhere could soon decide to try for a CRISPR baby. We should aim to protect future children from being born stripped of their privacy and guaranteed a life of medical display and tracking that was justified on their behalf to service goals like parental genetic connection.

We need a federal ban on any private or publically funded research aimed at clinical tests of human germline interventions and specifically against the use of gene-edited human germ cells in assisted reproduction. We also need an international conversation on how to pressure the biomedical sector in a range of political contexts to stay away from the human germline.

Previously on Biopolitical Times:

Composite image via Pixabay (lungs), Pixabay (baby silhouette), and Flickr/Lisa Camper (DNA)

Collaborative Science on Historically Burdened Concepts: Intelligence, Genetics, Race & Socio-economic Status

Posted by Daphne Martschenko, Biopolitical Times guest contributor on October 6th, 2016

Image via Wikimedia: "Lithograph of a North American skull from Samuel Morton's Crania Americana, 1839. Morton believed that intelligence was correlated with brain size and varied between racial groups".

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Charged Words

Intelligence is a highly charged word with ties to racist, classist, and eugenic narratives. In the United States, it has been used historically to assert and establish racial and class hierarchies, especially those between Blacks and Whites, and has long been linked to notions of biological difference.

In the early twentieth century, these notions were frequently explicit. As one example among many, Princeton psychologist Carl Campbell Brigham, creator of the SAT and member of the Advisory Council of the American Eugenics Society, wrote in 1922:

According to all evidence available…American intelligence is declining, and will proceed with an accelerating rate as the racial admixture becomes more and more extensive…There is no reason why legal steps should not be taken which would insure a continuously progressive upward evolution… The steps that should be taken to preserve or increase our present intellectual capacity must of course be dictated by science. (Brigham, 1922: 210)

Even in the years following World War Two, when overt claims of racial differences in intelligence were often muted, Nobel Laureate (in physics) William Shockley could openly argue:

I sincerely and thoughtfully believe that attempts to demonstrate that American Negro shortcomings are preponderantly hereditary is the action most likely to reduce Negro agony in the future… I propose a serious scientific effort to establish by how much the distribution of hereditary potential for intelligence of our black citizens falls below whites…If those Negroes with the fewest Caucasian genes are in fact the most prolific and also the least intelligent, then genetic enslavement will be the destiny of their next generation. (Shockley, 1971: 244)

In June 2000, when the completion of a preliminary sequence of the human genome was announced at the White House, President Bill Clinton famously said,

One of the great truths to emerge from this triumphant expedition inside the human genome is that in genetic terms, all human beings, regardless of race, are more than 99.9 percent the same. (GenomeTV, 2012)

But this did not end debate about race, genes, and intelligence. In fact, many observers have noted that the years following this announcement saw an uptick in claims that race is a biologically meaningful system of classification. In 2005, Francis Collins himself suggested that “we now need to study how genetic variation and disease risk are correlated with self-identified race” (Krimsky, 2011: 25).

Among those who study genetics and intelligence today, the discourse about race is couched in more subtle and humanitarian terms than it was in the twentieth century. Take for example G is for Genes, published in 2013 by behavioral psychologist Kathryn Asbury and behavioral geneticist Robert Plomin. The book advocates for “genetically sensitive” schools that use genetic information to maximize a child’s abilities through a system of personalized learning. In a chapter titled “Mind the Gap: Social Status and School Quality,” the authors discuss the impacts of low-income status, poor parenting, and teacher quality on a child’s success in the classroom. Race is remarkably absent from the picture.

Of course, conscious and unconscious assumptions about links between race and cognitive ability haven’t simply disappeared. Although race is not valid as a biological system of categorization (Cooper et al, 2003), it remains an important causal social factor. Any research that has a history of marginalizing certain groups needs to address race explicitly—both as an inherited colonial system of classification and as a form of social inequality.

Recognizing the detrimental impact of race on an individual’s life circumstances is important for creating meaningful and effective improvements and change. Talking about race as a social factor that shapes an individual’s everyday experiences is a way of challenging vast and recurring misapprehensions that locate race in notions of the biological. Failing to talk about it makes that challenge far less likely to succeed.

Heated Debate

Both in the social sciences and hard sciences, discomfort, confusion, and even denial often accompany conversations about intelligence. Each side habitually questions the rigor, benefit, and legitimacy of the other’s work. My own research as a PhD candidate sits between these fields, where the tensions between the two are inescapably clear.

My work focuses on four terms with burdened histories: intelligence, genetics, race, and socio-economic status. I examine how genetics research into intelligence and educational attainment affects the United States education system, where documented racial and socioeconomic disparities prevail and where teacher perceptions of student ability are known to affect student performance and referrals for gifted education programs (Elhoweris et al, 2005; Gillborn et al, 2012; Grissom, 2016; Slate et al, 1990).

On the one hand this means that I’m reading Genome-Wide Association Studies on educational attainment or intelligence, and engaging with geneticists who produce a form of scientific knowledge (Davies et al, 2011; Plomin et al, 2013; Rietveld et al, 2013; Selzam et al, 2016). On the other hand, I’m working with teachers in the classroom who are trying to make sense of why some bodies are less visible in gifted education programs than others (though gaining access in schools has been remarkably difficult, highlighting the charged and controversial nature of this project).

This is terrain on which it should be possible to connect the social sciences to hard sciences. But it is a landscape fraught with competing and underlying political debate. Two of the key questions: Are hard scientists socially responsible for how their work is interpreted and disseminated? Are social scientists truly informed about the science behind the work they often critique?

As an anthropologist, I am aware of the murky origins of my field as a whole—its expansion to legitimize Western colonialism, its use of scientific language and eugenics to validate social hierarchy as naturally occurring and biologically based. Anthropology, like other disciplines, has mobilized the concept of intelligence to maintain racialized matrices of power and hierarchies of inequality.

Scientists, on the other hand, often see their work as separate from social structures and narratives, rather than embedded in them. But insisting on the inherent objectivity of science is dangerous. In the case of genetics research on intelligence, its social impact on the US education system is potentially vast. Those who choose to research the biological basis for intelligence or educational attainment have a special responsibility to recognize this, and to understand its historical and foreseeable pitfalls. Collaborating with social scientists can help to make social implications more clear. While socially neutral research might not exist, socially responsible research certainly should.

Social scientists also have a responsibility. They can understand the methods and techniques of scientific research. And they can engage with geneticists in an open and inquiring manner. Intelligence researchers see legitimate benefits for individuals and society in their work. The social sciences can understand what the argued benefits are and why they are deemed valuable. Having a background in basic genetics and understanding the methodological practices at work in the field can strengthen critiques of the risky assumptions built into the methods and techniques of genetics research or highlight weaknesses in findings.

Scholars working in the hard sciences have faulted the media for misinterpretation, oversimplification, or sensationalism of their work (Asbury and Plomin, 2013: 96). Those in both social and hard sciences have noted that misleading hype often emerges in university press releases associated with the research (Evans, 2016: 11-13).  Understanding the conditions and constraints of research, and what published academic journal findings can actually demonstrate, might test whether this is, in fact, the case and keep researchers and public media in check.

Prospects for Reconciliation

So how do we collaborate across the social and hard sciences? And how do we as researchers make our ways through our work detached from personal lived experiences, appearances, and backgrounds that might inform how we look at another discipline? How might we try and set apart our work from the history that precedes it? Is it too dangerous to even try? Would doing so perpetuate systems that marginalize or make peripheral certain groups? I know my experiences as an ethnic minority and my work in the education system with underrepresented groups certainly inform my approach to research; denying this would ignore potential biases I carry.

Whatever collaboration might look like, finding a common language for discussion is paramount. Part of the disconnect between the soft and hard sciences stems from different academic vocabularies and expressions, making one field at times seem like a foreign language to the other. I think, for instance, that hard scientists might have trouble reading this piece, filled as it is with an anthropologist’s lexicon.  Creating a shared language centered on the pursuit of knowledge could be one good starting point, since both sides already seem invested in this area in their own way. Shared language that acknowledges the social consequences and historical context of knowledge production would also be enormously beneficial. Together, these sets of common concepts and vocabulary might help bridge the existing divide between the social and hard scientists.

Intelligence. Genetics. Race. Socio-economic status. Using these four words in the same sentence has closed doors for me as a researcher. Each is difficult to talk about on its own—and they’re almost explosive when joined together. Despite this, I strongly believe in combining these concepts through a full range of biological and social science methodologies—and in the value of picking up some diplomacy skills along the way.

Image via Wikimedia

Works Cited

Asbury, K., & Plomin, R. (2013). G is for genes : the impact of genetics on education and achievement, xii, 197 pages.

Brigham, C. C. (1922). A study of American intelligence. Princeton: Princeton university Press.

Cooper, R. S., Kaufman J. S., & Ward, R. (2003). Race and Genomics. New England Journal of Medicine, 348(12), 1166-1170. http://doi.org/10.1056/NEJMsb022863

Davies, G., Tenesa, A., Payton, A., Yang, J., Harris, S. E., Liewald, D.(2011).
Genome-wide association studies establish that human intelligence is highly heritable and polygenic. Molecular Psychiatry, 16(10), 996–1005.

Elhoweris, H., Mutua, K., Alsheikh, N., & Holloway, P. (2005). Effect of Children’s Ethnicity on Teachers’ Referral and Recommendation Decisions in Gifted and Talented Programs. Remedial and Special Education, 26(1), 25–31. http://doi.org/10.1177/07419325050260010401

Evans, J. P. (2016). (Mis)understanding Science: The Problem with Scientific Breakthroughs. Hastings Center Report, 46(5), 11–13. https://doi.org/10.1002/hast.611

GenomeTV. (2012). Human Genome Announcement at the White House (2000). Retrieved from https://www.youtube.com/watch?v=slRyGLmt3qc

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5 Reasons Why We Need People with Disabilities in the CRISPR Debates

Posted by Emily Beitiks, Biopolitical Times guest contributor on September 8th, 2016

A metaphorical graphic to explain the CRISPR-Cas9 gene editing complex is shown: Two wrenches with the words

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This article was cross-posted on Disability Remix, the blog of the Paul K. Longmore Institute on Disability at San Francisco State University.

Maybe you haven’t heard of CRISPR-Cas9. To be honest, if I hadn’t previously worked at the Center for Genetics and Society, I probably wouldn’t have heard of it either. It’s a new genetic technology that brings modification of the human germline closer in reach than ever before.

Driven by the promise of allowing parents to avoid passing on incurable genetic diseases to their offspring, the use of CRISPR to engineer human embryos presents serious risks with particularly strong implications for people with disabilities—in the present and future. It’s been getting plenty of press. And yet, as someone who tries to stay up to date constantly with what’s trending in the disability social media scene, it has seemed to me that CRISPR has been more or less absent.

Why aren’t people in the disability community talking more about this?

Why should people with disabilities have to keep spending their time justifying their existence rather than just enjoying it at present?

An event poster for Future Past in 2013 is shown, with purple clouds, and a DNA helix forms the base of a signpost with two directions: future and past.I recall a conference I organized with the Longmore Institute in 2013, “Future Past: Disability, Eugenics, and Brave New Worlds.” Disability studies scholar and activist Marsha Saxton began her panel by sharing a memory of talking with a genetics counselor while contemplating getting pregnant. The counselor exclaimed, “Gee, if I’d have known Spina Bifadas turned out as well as you, I would not have recommended selective abortion as much as I’ve done!”

Similarly, a conversation comes to mind that I had with another disability activist, who previously focused on the neo-eugenic uses of genetic technologies but left because she was burnt out. As a person with a disability, she didn’t want to continue spending her life’s work validating her own existence, and moved into the arts instead to celebrate the beauty that disability brings.

Despite the disability rights movement’s progress, both of these stories help illustrate why people with disabilities might not want to waste their time thinking about these issues. Indeed it suggests that my own lack of understanding of why people with disabilities aren’t more interested in following this comes from a place of privilege as a nondisabled ally. It seems that for many, engaging in the debate is just too hurtful. Why should people with disabilities have to keep spending their time justifying their existence rather than just enjoying it at present?

Yet when it comes to CRISPR for human reproduction, disability is at the center of it all. Whether or not CRISPR takes hold in the fertility clinic, the scientific and philosophical debate is constantly centered on disability. So here are five reasons why CRISPR and disability are dangerously intertwined, exemplifying why we need the perspectives of people with disabilities weighing in on this debate, as unappealing as diving in may be:  

  1. Modern-day eugenics. For me, it’s pretty much that simple… and that scary. Advocates of using CRISPR for heritable genetic modification argue that we can distinguish to ensure this is only used for deselecting genetic diseases (“germline therapy”), rather than using the technology to select for more desired traits (“enhancement”). But even this binary presumes we can draw clean lines to eliminate diseases that don’t also suggest preventing disabilities. It brings up questions of what we should and shouldn’t value in future generations. Knowing that these choices are being made in a deeply ableist culture—where people like Marsha Saxton would likely not have been born because of fear of the “spina bifidas”—illustrates how hard it would be to draw lines about what genetic diseases “we” agree to engineer out of the gene pool and which are allowed to stay. 

  2. We are moving backwards. Even as opponents of CRISPR germline modification make their case, it often hinges on the idea that we don’t need CRISPR because we already have preimplantation genetic diagnosis (PGD) to allow parents to have children free from genetic abnormalities. However, disability advocates still contest PGD as socially harmful genetic selection and disability prevention. The Center for Genetics and Society’s Executive Director Marcy Darnovsky recently shared with me that when she points out this tension to the press, they rarely if ever include it.

  3. It’s selling disability as tragic. This isn’t new. It’s how preimplantation genetic diagnosis was sold. It’s how stem cell therapy was sold. Before we even develop the technology, we develop the story: people with disabilities are living a sad, tragic existence, and only through progress in the genetic sciences can we spare their suffering in future people. This tragedy gets retold and retold, creating urgency for the technology in question: Forget the vibrant disability community. Forget the changes in technology, art, and culture that people with disabilities bring to our world from the insights of living with a disability. We don’t have time to worry about ethics or risks! Selling the need for the cutting edge technology comes on the backs of people with disabilities, so science policy and debates become one more place where the tired trope of disability as “the worst” thrives.

  4. Nondisabled people won’t get it unless people with disabilities are part of the debate. Nondisabled proponents are arguing we need to use CRISPR to prevent disabilities. Nondisabled opponents suggest we should be wary of CRISPR for its threat to disability justice. Both sides are talking about disability, but the conversation would carry more weight if disability activists were involved.

    This is why the work of disability activist and writer Harriet McBryde Johnson was so powerful. In a series of conversations with philosopher Peter Singer, one of the most outspoken advocates of preventing children with disabilities from being born, McBryde Johnson put a face to his theoretical exercises and argued that they had life or death consequences for people like her. (Still image via Vimeo)

    Harriet McBryde Johnson is pictured, smiling, in an interview from the It's Our Story project.When I share my interests in these sorts of debates, I often get this wave of enthusiasm from other nondisabled people who seem to find it fun to sit around and discuss how much better the world would be if we could prevent or cure all disabilities. They want to talk it out through thought experiments and philosophical exercises. I mean no disrespect to those who think that way. After all, I’m married to someone with a philosophy degree, and some philosophers with disabilities have made important contributions to the way disability is theorized in ethical debates (e.g. Adrienne Asch and Anita Silvers). However, I think the debate needs more perspectives and personal stories coming from people with disabilities who help us to attach faces and lives to the debate and to remind us what a loss it would be to live in a world with less disability.

    (At the 2015 National Academies' International Summit on Human Gene Editing, the conversation did not include any featured speaker open about being a person with a disability. There were efforts to invite one or two, and Ruha Benjamin did give a wonderful presentation which you can view here, but the omission was startling.)

  5. It impacts the fight for disability equity today.  When cures and the end of disability are always cast as “just around the corner,” it continues to make it harder to fight for what we need today. We continue to invest millions of dollars on anything that might help us eliminate disability. Meanwhile people with disabilities struggle to implement things to make our society more accessible right now,  as these social changes are always framed as “too costly.” This doesn’t mean that we need to be entirely anti-cure and certainly not anti-research, but again, we need people with disabilities to play a central role in this debate. A diversity of voices speaking to their experiences with disability can teach us that we don’t need CRISPR to “solve” the disability = tragedy equation. Social changes to the built environment and cultural changes to discriminatory attitudes are a safer bet with more widely shared impacts.

A overhead view of a spiral staircase made of white marble with a gold banister, circling into a distant horizon, is reminiscent of a DNA helix and the staircase in the 1997 film, GATTACA.

2017 will mark the 20th anniversary of GATTACA’s release, a film which brought to the big screen issues of genetic discrimination resulting from the effort to control human reproduction (for a great disability take on it, read here). The “not too distant future” imagined in the film grows closer with CRISPR.  I wish I could just turn away from CRISPR to hope it’ll pass over—I far prefer spending my time on our disability film festival or promoting disability history. Yet disability culture and arts are more related to CRISPR than one might think. They provide a powerful illustration of how disability enriches our world. It just might be worth making time for the CRISPR debates (even though the emotional labor of doing so is huge), to help ensure a long-term future for disability as a creative and generative force.

Emily Beitiks is Associate Director of Paul K. Longmore Institute on Disability at San Francisco State University, and a former staffer at CGS. Beitiks earned her Ph.D in American Studies from the University of Minnesota with the dissertation "Building the Normal Body: Disability and the Techno-Makeover". 

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To Err is Biotechnological: Reflections on Pew’s Human Enhancement Survey

Posted by Gina Maranto, Biopolitical Times guest contributor on August 9th, 2016

Deep brain stimulation, image via Wikimedia.

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Permit me a brief digression before I comment on the latest Pew Research Center survey of Americans’ attitudes toward biomedical technologies meant to “enhance” human performance.

I am married to a bioengineered man.  Almost three years ago, after having been steadily eroded by Parkinson’s disease for over a decade, my husband Mark Derr braved deep brain stimulation (DBS) surgery.  His incredible surgical team at Johns Hopkins implanted electrodes into his brain and a battery-driven stimulus device in his upper left pectoral, and the results seemed, at the time, nothing short of miraculous.  With a mere incremental upping of the voltage during an initial adjustment session, the DBS instantaneously stilled Mark’s tremulous hand and foot, giving him relief that the standard drugs had only intermittently provided.

Much as DBS has improved his quality of life, Mark is far from cured.  DBS cannot address the muscle stiffness, balance problems, and neurological pain he experiences daily.  And the instrument requires constant attention.  Mark’s days consist of frequent monitoring of his device; his weeks, of periodic adjustments of the voltage; his months, of consultation with his medical minders in Baltimore, where he travels every five months or so for “tweaking.”  His latest technician there told him, “You are your own experiment.” 

Based on direct experience, then, I would advise that heady promises regarding biotechnology should be viewed with a high degree of skepticism. DBS, for example, may eventually get better at addressing Parkinson’s symptoms, but cannot reverse the neuronal damage that lies at the base of the disease.  Many other biotechnological interventions also carry with them an almost guaranteed set of deficits, inadequacies, inconveniences, and risks that are conveniently ignored in the valedictory narratives woven around them. 

More profoundly, Mark both is and is not the Mark he was before DBS, and questions of how identity or even soul are altered by such technologies are only rarely addressed. (For excellent examples where they are, check out Françoise Baylis’s, “'I Am Who I Am’: On the Perceived Threats to Personal Identity from Deep Brain Stimulation” and Sherry Turkle’s edited volume, The Inner History of Devices.)

In some ways, the Pew survey, which looked at attitudes toward three hypothetical “enhancements” (although one, which would involve genetic enhancement of future children, is presented as a preventative medical measure), suggests that Americans get that biotech interventions raise profound social and ethical questions.  In the chart below, more respondents said they were concerned rather than enthused about fiddling with babies’ genomes, following in the footsteps of Johnny Mnemonic, or engaging in blood doping squared.  Not only did most of those surveyed expect that the cons would outweigh the pros of such interventions, a majority believed such interventions “could exacerbate the divide between the haves and have-nots in society…[and that] inequality would increase because only the wealthy could afford these enhancements.”

[Figure via Pew Research Center]

But Pew itself seems oddly disposed to undercut its own findings in the large accompanying piece probing “expert” opinion on enhancement in general. David Masci, in “Human Enhancement: The Scientific and Ethical Dimensions of Striving for Perfection,” seems to take the side of the pro-enhancement champions, giving ample play to the “sky’s the limit” point of view of self-avowed transhumanists and giving the final world to a futurist who says, “We’ll probably start by taking a human version of nirvana and creating it in some sort of virtual reality,” and then “we’ll transition to realms of bliss that we can’t conceive of at this time because we’re incapable of conceiving it.”   Masci also strives to normalize enhancement, starting his piece with the claim that, “Human enhancement is at least as old as civilization.”

This claim, often advanced in pro-enhancement camps, suggests that education and exercise are equivalent to chips in the brain or performance enhancement through genetic alterations that would increase, say, fast twitch muscles.  Call it argument by sleight of hand or by failure to make proper category distinctions.  If we really want an accurate analogy, we should think about phase changes: water becomes colder and colder, and then becomes ice.  A quantitative change leads to a qualitative change.  Step by step, biotechnologists alter us; at a certain point, a qualitative change ensues.  We cannot perfect the human; we can only push genes and protoplasm past a certain point—and no one quite knows where it lies, but many have agreed that the germline is certainly one clear and present possibility—and we will have crafted a new entity. But to what purpose is questionable.

Masci writes

Instead of leaving a person’s physical well-being to the vagaries of nature, supporters of these technologies contend, science will allow us to take control of our species’ development, making ourselves and future generations stronger, smarter, healthier and happier.

To this I say hooey and hooey again.  Even the most exquisitely engineered of artifacts—take the Large Hadron Collider for example—are prone to error and screw ups.  Surprise, chance, and unpredictability are hard wired into our universe.  Whether breakdowns come from passing birds or wayward weasels, breakdowns will come.  Even when our biomedical and bioengineering prowess achieves its best, there will always be downsides.


Gina Maranto is a fellow at the Center for Genetics and Society. She is Professor and Director of Ecosystem Science and Policy and Coordinator of the Environmental Science and Policy program at the University of Miami's Leonard and Jayne Abess Center. Her articles, opinion pieces, and reviews have appeared in Discover, The Atlantic Monthly, Scientific American, The New York Times, and other publications. She is the author of Quest for Perfection: The Drive to Breed Better Human Beings.


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The Case Against Public Investment in Reproductive Genetic Modification

Posted by Jessica Cussins, Biopolitical Times guest contributor on August 3rd, 2016

Untitled Document Philosopher Tina Rulli argues that three-person IVF is not a “life-saving therapy” or even a medical treatment at all. Rulli explains why the technology does not meet a plausible social value standard that would justify public research investment, and why other germline modification techniques may not either.

UC Davis Assistant Professor of Philosophy Tina Rulli published a report titled "What is the Value of Three-Parent IVF?" in the July-August 2016 Hastings Center Report.

If you have seen any of the countless descriptions of three-parent or three-person IVF, also called mitochondrial replacement, as a “life-saving treatment,” you might find the question in the title confusing. How could any life-saving treatment not be of value?

As Rulli explains, the claim that this technology would save lives is “inaccurate and exaggerated.” Three-person IVF would not cure, treat, or save anyone. At best, it would allow women affected by a particular kind of mitochondrial disease to have an unaffected child who is mostly genetically related to her.  

The experimental procedure works by genetically engineering an embryo to combine the intending mother’s nuclear DNA with another woman’s mitochondrial DNA. The choice a woman would make is not “do I save my child?” but “do I want to have a child in this way?” Rulli makes a strong argument that these are not morally equivalent, and that it is irresponsible to act as though they are.

How one thinks about this distinction between creating an unaffected genetically related child and saving lives may have implications well beyond three-person IVF. As Rulli points out, the creating-saving distinction probably holds for any form of germline genetic modification:  

The argument here might provide a template for objections to other germline modifications or gene therapies that are valuable solely or primarily because they may enable prospective parents to have healthy genetically related children who would not otherwise exist.

For example, it would probably mean that the experiment carried out in April using CRISPR to introduce an HIV-resistant mutation into the DNA of embryos could also not be called a life-saving treatment, even if it worked well (it didn’t) and even if it was going to be used to generate a person with altered risk factors (it wasn’t).

Rulli further undermines the medical relevance of three-person IVF by pointing out that it isn’t the most effective way to reduce the transmission of mitochondrial disease. Only a small subset of mitochondrial disease could even hypothetically be addressed by this technology, since most cases involve mutations in nuclear DNA (instead of or in addition to mutations in mitochondrial DNA). And the procedure would only be accessible to women with far more financial resources than most have.

The alternative to three-person IVF – using an entire egg (rather than an egg that has had its nucleus removed) provided by another woman – would completely eliminate the risk of transmitting mitochondrial disease. In other words, the real value of the experimental procedure is not about health at all, but about the personal preference to have a genetic connection to one’s child. Rulli refers to this as “medicalization of a social preference” that works by “preserving the dominance of the bionormative family schema.”

Based on these points, Rulli asserts that three-person IVF lacks the social value that proponents have claimed for it, and that would be a necessary precondition of ethical clinical research, both in order to use limited health resources responsibly and to avoid human exploitation. She therefore concludes, despite the Institute of Medicine’s report endorsing the potential of “clinical trials,” that any public research investment in three-person IVF would be unethical.

Rulli reaches this conclusion even without addressing the multiple safety and efficacy concerns that have cropped up regarding three-person IVF. She takes it for granted that the technology will do what it says it will do. But she does note:

If the concerns about the safety of three-parent IVF for children and future generations are legitimate, then these considerations are not over-ridden by proponents’ claims about the great, life-saving potential of this technology. We know those claims to be fictional.

Throughout the push for legalization of these three-person IVF techniques, some advocates have painted any concern raised as anti-science or anti-technology. Rulli takes pains to point out that she is neither. Her argument is not against the technology per se, but whether to invest public resources in its development when the opportunity cost of that research includes, among other things, diminishing resources for investigating treatments for people suffering from mitochondrial diseases today.

Given the firestorm of attention to CRISPR, and the relative ease of genetically modifying an embryo versus an adult, we may well see arguments about germline gene editing as a “life-saving treatment.” Proponents are already pointing to three-person IVF as a pioneer technology that is paving the way for other forms of germline modification, so it is critical to set the record straight. Rulli’s report will be a useful framework to have on hand.

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The "Outing" of Sperm Donor 9623

Posted by Hasmik Djoulakian on July 1st, 2016

Graffiti drawing of three large sperm on gray concrete.

Sperm banks continue to expand their search and selection criteria to include clinically ambiguous and frankly irrelevant donor information (favorite pets, astrological sign, hobbies). Yet their failures to verify the self-reported personal and medical histories of donors have recently prompted a set of legal complaints aimed at combating fertility clinic negligence in the unregulated assisted reproduction industry in the U.S.

Several families, including Angela Collins and Beth Hanson from Canada, have recently brought a lawsuit against one Georgia-based clinic, Xytex, and one particular donor. The legal questions are themselves significant, but the case also raises important considerations around disability, class, and genetic determinism.

Xytex, along with its distributor in Ontario, informed Collins and Hanson that Sperm Donor 9623 had an IQ of 160 and was pursuing a PhD in neuroscience, and had no history of physical or mental illness apart from his father’s colorblindness. The clinic did not verify this information, but relied on what Sperm Donor 9623 had reported. The parents, now raising their young son, were understandably shocked upon learning that his donor had in fact spent time in jail and received multiple diagnoses of mental illness.

Parents’ anger, and their concern about their families’ future, should of course be recognized and respected.  But so should the complicated set of issues that this case raises. How do we assess it while resisting genetic determinism, challenging biological explanations for class-based inequalities, and critiquing a purely medical understanding of disability? How do we negotiate the differences between human variation and costly, painful, mental illness? How should we come to terms, legally, politically, and emotionally, with the responsibility – or negligence – of commercial players in the realm of human reproduction?  None of the answers are obvious.

The couples who used Sperm Donor 9623 may never have realized that he had been diagnosed with schizophrenia and other mental illnesses if Xytex had not accidentally and negligently revealed his identity in an email exchange. Three of the many families who used his sperm are now seeking to set up a fund for their children’s preventative health care and future medical costs. In addition to its part in a legal strategy, the argument for this fund brings into focus the various roadblocks that people with mental illness face accessing employment, education, and mental health services.

In most articles discussing the case, the "perfect" sperm donor that families thought they were selecting (high IQ, graduate degree, etc.) is rhetorically pit against the donor’s "actual" identity: a "mentally ill convicted felon" (1, 2, and 3). Press releases, news coverage, and lawsuits indulge in assumptions about genetic determinism and overstate the chance that the children will take on the behavioral characteristics of their sperm donor.  Though such reductive sound bites are common in media representations, they do not emerge in a vacuum and their harm extends beyond this one case. The assumptions that permeate media and legal discourse about Sperm Donor 9623 hinge in part on widespread misunderstandings of disability, poverty, and genetics. Much of the language swirling around this case creates false dichotomies between health, intelligence, and success versus illness, criminality, and failure. We all live in far greater nuance than that, whether or not we currently live with a disability, including schizophrenia.

Aside from focusing on his schizophrenia, many articles also mention the sperm donor’s felony charge, implicitly suggesting there is a link between genes and criminality (and mental illness and criminality). This is an incorrect and politically troubling connection. But it is not without its supporters. For more than a decade, Kent Kiehl, a psychologist and neuroscientist who also studies schizophrenia, has been visiting high-security prisons in the U.S., scanning the brains of more than 4,000 inmates with a mobile MRI unit, and building a database to look for genetic links to violence. Kiehl claims that psychopaths and violent people "have different brains," which are "at least 50 percent caused by genetics" and supports research aimed at studying the MAO-A gene (which has been problematically nicknamed the "warrior gene"). A more recent study on MAO-A chose as its sample the brains of 328 male children. These studies and others like them assume a lot at the outset, including that incarcerated people (and males) are inherently more violent than others, and that this is genetically pre-determined.

Many news articles about Sperm Donor 9623 also mention that he had dropped out of college, implying there are "genetic links to educational attainment." While some researchers recently touted a study that identified 74 genetic variants that influence how many years of school people finish, a closer look reveals an important caveat: those 74 genes "explain slightly less than one-half of 1 percent of the differences between people’s education levels." Given the other aspects of Sperm Donor 9623’s identity, there’s a missing discussion in the press about whether he had the necessary mental health or financial support to finish his education.

The links between genes and the likelihood of developing schizophrenia are difficult to quantify or clinically predict. Many gene clusters have been identified that may contribute to the diagnosis, and it is also believed that environmental conditions can trigger schizophrenia. The complicated state of the field has been muddled in media coverage of this lawsuit, as in one CNN article claiming that certain gene clusters cause schizophrenia 70% to 100% of the time. Critics point out that research findings are often overhyped, despite the currently enormous gap between the huge amounts of genetic information that are generated and the relatively miniscule amounts of clinically reliable advice based on it.

Being predestined at birth for dropping out of school and committing crimes is logic that sounds familiar to historians. In the U.S. alone, tens of thousands of people have been sterilized and excluded from "respectable" society through state and institutional eugenics programs because they were considered predisposed to criminality, "feeble-mindedness," and all-around substandard genetic material. Fear of disability – physical or cognitive "deviance" from what those with power have historically decided is "normal" – is wrapped up in mistrust of people who are poor or have criminal records. At the core, this anxiety continuously answers its own question: Who should be allowed to reproduce?

Nothing about this case is objective, self-evident, or easily teased apart, but the history of eugenics informs the pressures faced by families in this high-tech fertility moment. People now encounter an expanded range of options, expectations, and ways of thinking about families and reproduction. Parents understandably want the best for their children. It would be difficult, if not impossible, to not feel frightened at the prospect of a child developing schizophrenia, especially when everything around us says our functioning needs to be "normal" and when social supports are so lacking. And many would recoil in fear from a gamete donor who had dropped out of college or had prior convictions, without stopping to consider the eugenic assumptions embedded in that reaction.

The ableist and classist underpinnings behind the drive for particular kinds of gamete donors sit on a landscape defined by expectations and mechanisms of consumer-based, free market products and purchases. If assisted reproduction becomes a transaction, it can become difficult to resist treating the resulting children as commodities. The parents in the Xytex lawsuit clearly don’t believe their children are "incorrect" or "undesirable," but it is difficult to procure damages for breaching informed consent and covering potential future medical costs without arguing that the sperm donor was absolutely "incorrect" and "undesirable."

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Unheard Publics in the Human Genome Editing Policy Debate

Posted by Elliot Hosman on June 8th, 2016

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Though the CRISPR-Cas9 genome editing platform is only some four years old, universities and industry are racing forward with a range of research projects, including in human embryos. Given the speed of uptake, and the recent approval of non-clinical experiments with embryos in a number of countries, many are wary of this kind of CRISPR research because it could so easily pave the path to high-tech fertility clinics vending eugenic upgrades.

A vast diversity of publics, communities, and stakeholders are deeply concerned about this prospect of heritable human genetic modification. Yet, a recent comment in JAMA Forum by Eli Adashi seeks to funnel this textured landscape of opinion into a tale of two cities in an international biomedical arms race in which the American research establishment is falling behind.

Adashi frames this battle royale as "Divergent US vs UK Human Embryo Research Policies" in light of the HFEA's decision to license Kathy Niakan's CRISPR research with viable human embryos. (Her research program has yet to begin. It recently received a second round of ethical approval to use surplus embryos from IVF clinics, but those may take months to secure.)

On one side, Dr. Adashi places a mostly British cohort of pioneers, including two groups of research charities and stem cell researchers that have separately gone on record advocating for clinical research into genetically modifying embryos for human reproduction, once certain thresholds are met. He writes:

Many UK scientists quoted in the lay and professional media welcomed the HFEA decision. Professor Sir Robert Lechler, MB, ChB, PhD, President of the UK Academy of Medical Sciences, offered that “studies such as [that proposed by Dr Niakan], that focus on asking basic questions about human-embryo development, are needed to help answer the many scientific and ethical questions remaining in this field.” Similar sentiments were echoed by other UK-based groups, including the Hinxton Group, an international consortium on stem cells, ethics, and law, the Wellcome Trust, an independent global charitable foundation dedicated to improving health, and the Medical Research Council, a leading funder of medical research. Some prominent US scientists also spoke approvingly of such work going forward.

On the other side, he places two lone voices termed “bioethics groups,” CGS included, whose concerns are vaguely glossed:

In contrast, some bioethics groups on both sides of the Atlantic criticized the HFEA’s action. Marcy Darnovsky, PhD, executive director of the Center for Genetics and Society, in Berkeley, California, warned that genome editing poses “dire safety and societal risks.” Calum MacKellar, PhD, of the Scottish Council on Human Bioethics, in Edinburgh, said that “allowing the gene editing of embryos opens the road to genetically modifying all the descendants of a person as well as full blown eugenics which was condemned by all civilised societies after the Second World War.”

A good number of bioethicists have spoken up in the human gene editing debate to voice concerns around informed consent of future generations, the sharing of risks and benefits, and the distributional justice problem of inequitable access to genetically enhanced reproduction. CGS' concerns with heritable genetic modification include those and others: they extend far beyond problems inherent to the individual doctor-patient relationship. As a public interest organization advocating for human biotechnology to serve the common good, we are deeply concerned about the social justice implications of moving forward with the human re-engineering project of germline gene editing under the mislabeled auspices of medicine and science.

What's on the international policy table is the potential creation of genetically modified humans. The substantive issues at hand strike at deeply held values across nations and cultures, including commitments to social justice, human rights, and the public interest. Yet many aspects of the futures that CRISPR would enable, and of the context of unprecedented health and wealth inequalities in which it would be deployed, are not being discussed democratically.

Who is most vulnerable of being “edited out” of future generations, and why aren’t their voices at the policy table? Groups and voices dangerously under-represented or missing in these conversations include those under consideration for editing: disability rights and justice, racial justice, reproductive rights and justice, public health, global health, environmental justice, religion and spirituality, LGBTQI rights and justice, and indigenous rights and justice. How would the unquantifiable lives and interests that these voices represent be affected by the fantasies and projects of a technology-enabled-and-optimistic few?

Recent public opinion studies show that a majority supports the development of accessible gene therapies for consenting patients. By contrast, the polled public is overwhelmingly opposed to genetically modifying human embryos for reproduction.

The history of eugenics and its goal to competitively optimize human reproduction is a century-old, and deeply fraught, enterprise. Without a federal law banning human germline modification, the United States is vulnerable to private interests moving forward uninhibited. This could usher in a new form of high-tech eugenics that would exacerbate existing inequalities, and create new forms of discrimination. We cannot proceed with germline interventions for human reproduction without imperiling the existence of a just and sustainable world for future generations.

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On Cyborgs and Gene Editing: Lessons from Orphan Black

Posted by Jessica Cussins on June 1st, 2016

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The latest season of Orphan Black takes a cue from Donna Haraway’s “A Cyborg Manifesto” to probe the boundaries of identity, humanity, and perfection, as it reminds us that mainstream genetic and reproductive technologies are closer to the show’s more radical technologies than we might think.

In “A Cyborg Manifesto,” originally published in 1985, Donna Haraway describes a cyborg as “a cybernetic organism, a hybrid of machine and organism, a creature of social reality as well as a creature of fiction.”

The clones of the BBC America television show Orphan Black seem to fit that definition well – they all possess snippets of synthetic DNA entwined in their genome, and often exist in an at least partially fictitious reality designed to better control their actions. However, the latest season explores the possibilities and meanings of cyborg-ness in greater depth. Fittingly, each episode is named with a quote from Haraway’s work: “The Collapse of Nature,” “Transgressive Border Crossing,” “The Stigmata of Progress,” “From Instinct to Rational Control,” “Human Raw Material,” and “The Scandal of Altruism.” And as Orphan Black engages with what it means to be a cyborg, this fourth season also situates itself in the ongoing conversation on new human genetic and reproductive technologies in the real world, including genome editing.


Neolution is the name of the show’s pro-eugenic movement, whose goal is to take control of human evolution. In the first episode of the season, a character reads from the book on Neolution: “The individual can only begin the journey to the extraordinary by casting off the genetically mandated human shell.” Sarah retorts that Cosima calls this stuff “sound bite science.”

The season reveals one of Neolution’s experimental genetic technologies: a synthetic worm-like organism implanted into people’s cheeks to act as an ongoing gene therapy delivery system. We find out that Sarah has had one implanted against her will and knowledge. But just as some transhumanists in real life choose to implant a range of devices in their bodies for numerous reasons, some Neolutionists in the show have opted for the “cheek worm” in order to produce a desired alteration to their body.

Whereas previous episodes have established a clear distinction between the clones as non-consenting research subjects and the Neolutionists as willing bio-hackers, the line between coercion and choice over one’s bodily autonomy is increasingly blurred in this season. In a particularly memorable moment, Cosima holds the decaying head of former Neolution leader Dr. Aldous Leaky to investigate his still-thriving “cheek worm” and asks, “Who’s the science now, bitch?”

In another heart-chilling scene, one of the clones agrees to withhold potential treatment from a child diagnosed with a genetic disorder who was made from her own cells, declaring the data learned from the disease’s progression to be more valuable for humanity than saving the child.

A more broadly relevant way in which the distinction between coercion and choice is tested comes in the form of a cutting-edge fertility program called BrightBorn. By this point of the show we know that Neolution’s leaders have extensive influence over the cloning programs; now we learn that cloning is only one mechanism of reproductive control in which they are interested. An acquaintance of suburbanite Alison has finally gotten pregnant thanks to BrightBorn Technologies, without having any idea that there may be a link between the company and more nefarious ends. Although BrightBorn keeps itself out of the public eye and does not publish its scientific findings, it is notably available to anyone willing to pay. BrightBorn is run by Neolutionists, but is marketed to all. In language reminiscent of the fertility clinic scene in GATTACA, the BrightBorn ad declares:

We can provide you with a healthy and thriving newborn, but why stop there? All of our children are born stronger and healthier. At BrightBorn Technologies we’re making the world a better place, one baby at a time.

Cosima points out:

Mainstream reproductive technology: it’s like a whole new side to Neolution.”

After sneaking into Brightborn’s facilities, Cosima not only finds a variety of experimental technologies ranging from embryo screening and selection to illegal germline modification techniques, but also what seem to be well-paid surrogate mothers under continuous surveillance while carrying the trial embryos. It is apparent that not all of the experiments go as planned, as Cosima witnesses the birth of a severely deformed baby in the limited time she is there. Afterwards, Cosima (italics) discusses what she saw with none other than the woman who created her:

“These are human beings that you’re tinkering with. Trial and error without consent.”

“These carriers are very well compensated.”

“And does that justify the baby that I saw? Look at me, I’m sick. I never gave permission for any of this.”

“No one gives permission to be born. I created you as a beautiful baseline to unlock the mysteries of the human genome.”

In a later conversation with the leader of BrightBorn who is competing for control of Neolution, Cosima learns that some people find cloning to be a crude mechanism for evolutionary control compared to gene editing:

“We don’t need your baseline. We can fix people now.”

“You can’t perfect the human genome. You can’t know what perfect is.”

“I do know. I was born sick.”

“I’m sick too. That doesn’t justify this.”

Season Four of Orphan Black also introduces the role of commercial genetic ancestry testing companies within the overarching project of understanding genetic identity, as Felix finds a “real [genetically related] sister” using an online DNA service. This poses a strange juxtaposition with the non-traditional clone “sestras,” as well as with Sarah, who was raised by a foster parent with Felix and who resents the implication that she is somehow less related than this “real sister” whom Felix has only just met.

Orphan Black has always been good at pushing the boundaries of what family and sexuality look like. The show has also made a move that destabilizes binary biological sex. Given Haraway’s claim that “the cyborg is a creature in a post-gender world,” it is fitting that we learn that the original DNA for both the female and male lines of clones came from a single chimeric woman.

Interestingly, even as everyone is enormously concerned with the well-being of “the original” in order to access her valuable DNA, she keeps secret the fact that she has leukemia. Perhaps she sees this as a way of reclaiming her death for her own, a kind of bodily autonomy she has been denied in her life.  Sadly, she is murdered in episode six, and so she is unable to have even that. But her desire to go untreated for her cancer is an interesting reminder that we often make different decisions when it comes to our own body than when it comes to the bodies of others.

This latest season of Orphan Black encourages us to question whether the kinds of technologies and ideologies presented in the show are less radical than they seem, and are in fact already with us in more innocuous forms today. Now that we have effectively donned smartphones as additional appendages and live in a world mediated by algorithms, to what degree are we all already cyborgs? And with the increasing normalization of assisted reproductive technologies to select and possibly even modify embryos, how far are we really from Neolutionism?

The quest towards perfection is a powerful narrative – in the show as in real life. But as the characters in Orphan Black prove repeatedly, biology and identity are marvelously complex and never compliant with even a single notion of perfection. And thank goodness for that. The show would be a lot less compelling if the clones really were all the same. 

Previously on Biopolitical Times:

See also:

Image via BBC

Forgotten Stories of the Eugenic Age #5: Creating Super-People

Posted by Natalie Oveyssi on May 23rd, 2016

The Birth of Venus by Sandro Botticelli, 1480s

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[Forgotten Stories of the Eugenic Age is a blog series exploring the lesser-known ways that eugenics affected and engaged American lives during the first half of the twentieth century.]

"Can science produce a superman?" science writer Waldemar Kaempffert wondered in the New York Times in 1928. "What kind of a superman do we want? And who shall dictate his specifications?"

In the early twentieth century, new genetic discoveries prompted supporters of eugenics to ponder the potential creation and characteristics of a superior human race. Many believed that encouraging the eugenically “fit” to mate and isolating or sterilizing the eugenically “unfit” would yield over time a superior population. They argued that breeding a better race represented the next step in human evolution. After all, careful husbandry had improved crops and livestock. Surely the production of "human thoroughbreds" could not be much different.

"Scientific" Creation
With new scientific knowledge and technologies, eugenists believed that they at last had the tools to create improved people. They were particularly interested in developing technologies for assisted reproduction, including the human application of animal husbandry techniques like artificial insemination. Dr. Julian Huxley, grandson of champion of the theory of evolution T. H. Huxley, predicted that such techniques would allow eugenically fit men and women to marry whomever they chose, but—regardless of their partners' fertility—have children with third parties who had been specially selected for their genetic qualities. (Those who might object to this cold calculation were merely exhibiting "outworn sentimentalism," said Huxley.)

Exhibiting similar thinking, Dr. George L. Streeter and Dr. Charles Davenport released a bulletin through the Carnegie Institute of Washington in 1933 discussing the eugenic implications of the quality of gametes. They wrote, "Every poultryman knows that in a setting of eggs not every egg will hatch a perfect chicken. Some eggs do not hatch at all; others produce defectives that soon succumb; from still others come chicks of inferior quality." Both in pigs and in people, as many as 25% of ova are "not good enough to hatch." According to the authors, the identification of gametes that would produce not only viable embryos but superior people could only be a worthwhile endeavor.

To detect superior gametes, scientists would need to examine genes more closely. Kaempffert wrote that marriage and childbearing between eugenically fit people was insufficient to breed a superhuman race. Successful eugenics would require a more "scientific" mode of thinking: Scientists needed to determine how to manipulate the genes that would be passed on to successive generations. "Unless we can control the interaction of the genes it is practically impossible to produce a race of supermen," Kaempffert wrote.

British scientist J. B. S. Haldane stated that with more knowledge about human genes, we could examine a newborn baby and say, for example:

He has got iso-agglutinin B and tyrosinase inhibitor J from his father, so it's twenty to one that he will get the main gene that determined his father's mathematical powers; but he's got Q4 from his mother . . . so it looks as if her father's inability to keep away from alcohol would crop up in him again; you must look out for that.

If we can understand the correspondence between genes and discrete characteristics, eugenists argued, we can largely determine the life trajectory of each human being. With such knowledge, we can facilitate the birth of the best individuals and eventually mold the human race into a finer shape.

Eugenic Health Certificates and Registries
Accordingly, selecting healthy eugenic partners for better raw materials became paramount for building super-people. In order to help fit members of the public find eugenic mates, many eugenists supported physician-issued eugenic health certificates and a eugenics registry office.

Continuing the comparison with livestock, Dr. J. H. Kellogg argued that since pedigree registries existed for horses, cattle, cats, and dogs, why not for people? "If a lady wishes to establish the standing of her pet poodle," he said, "she can do so by appealing to an official record and the puny canine may lift its head above its fellows as a born aristocrat, but nowhere on earth, as far as I know, is there to be found a registry of human thoroughbreds.” In an address before the second National Conference on Race Betterment in 1915, Kellogg argued that the world needed a "real aristocracy made up of Apollos and Venuses and their fortunate progeny." Without a eugenic registry, how could laypeople judge superiority and inferiority? How would we identify the human aristocracy?

The development of the eugenic aristocracy relied on classification schemes. One commenter, a Mr. Field of New Zealand, suggested the grouping of individuals into "three or four grades" based on their family health history. Field mused:

The “a” or top grade certificate given to a thoroughly sound and well developed person would be something worth having; a “b” would be tolerable; a “c” would conjure up visions of doctor's bills and physic for a family of future weaklings; and a “d”—well a “d” would be a pity.

Similarly, W. M. Hays, the Assistant Secretary of Agriculture, in an address before the American Breeders' Association, proposed a numerical classification of all people in the world. These numbers would "join genealogies into one numerical system, so that all relationships would be traced." Each person would be given a number that could be averaged with those of his or her family members to determine the family's quality. Hays acknowledged that this system would "somewhat divide people into classes," but stressed that "the classification would be beneficent, because it would be based on racial efficiency." Eugenists contended that a hierarchy based on "racial efficiency" would certainly possess greater validity than our current materialistic model. The Very Rev. William R. Inge predicted in 1931 that by the year 3000, individuals classified as "A-1" via mandatory mental and physical health examinations "will be as much sought after [for marriage] as wealth and titles are now."

Privacy of Genetic Information
Eugenists sought to assuage concerns about the exposure of personal genetic information, but their assurances may not have satisfied. Mr. Field promised readers that under his proposal, a eugenic examination would be "perfectly private and confidential" and "the person receiving it could then do as he or she thought fit with it." Nonetheless, he added that if a prospective bride or groom refused to present her or his certificate to the other party, the latter should be able to break an engagement without fear of a "breach of promise" reprisal in court. Furthermore, a copy of each person's certificate would be interred in government archives. Field proposed that officials could eventually use these records to determine the ancestry of all individuals committed to institutions.

Charles Davenport, the director of Cold Spring Harbor Laboratory and the Eugenics Record Office, argued that eugenics had been unnecessarily hindered by anxieties over revealing unfavorable family secrets. Davenport claimed that this fear was unwarranted because the careful collection of records would both improve the race and benefit the individual. For example, teachers could be given information on the “family and racial characteristics of each of their pupils" so that they could instruct their students differently. Also, state eugenic boards could "scientifically" regulate marriages and childbearing. If couples who were denied permission to have a child did so anyway, "the penalty shall be sterilization of the male." In spite of eugenists’ insistence that genetic privacy would be maintained—or would not be necessary—their proposals made it clear that exposing individuals’ genetic information was essential for achieving their desired goals.

While some supporters of eugenics stressed that the enhancement of the human race required not merely better breeding but also environmental and educational adjustments, others were skeptical. Men such as Leonard Darwin, son of Charles Darwin, and Henry Fairfield Osborn, the president of the International Eugenics Congress, argued that education and environment could not, in the words of the latter, "offset the handicap of ancestry." Plant specialist Luther Burbank added that environmental improvements could "bring individuals up to their best possibilities" but the practice of eugenic selection was "10,000 times more important and effective." Los Angeles Times science writer Ransome Sutton even wrote in 1933:

Education and environment may enable an honest-minded person to overcome inborn tendencies to a limited extent, but at heart no one can ever be much better than the two sets of chromosomes which come together when individual life begins.

Because many eugenists believed that genes dictated human potentiality and that social problems largely resulted from individual moral failings, the solution to social problems lay in improving genes. Reforming society was a palliative, not a cure.

American Exceptionalism
Despite the common conviction that the United States teetered on the precipice of utter mental and moral depravity, eugenists still believed that America was particularly well positioned to breed the great race of super-people.

Prof. Scott Nearing of the University of Pennsylvania's Wharton School, known in his later life as a left-wing economist, educator, writer, and political activist, was among those who believed that America had the "most potent opportunity the world has ever known . . . for the creation of a race of Supermen and Superwomen"—a contention perhaps incompatible with his other views that pajamas should be accepted evening attire, and that all women are leeches who need men's "sufferance and generosity" to survive. A New York Times article summarized Nearing's view that the United States could best produce a stronger race due to its “national resources, the stock of the dominant races, the possibilities of leisure, the emancipation of women, the abandonment of war, the knowledge of race-making and of social adjustment, and the widespread educational machinery." That half of the population consisted of parasites presumably would not hinder this outcome.

Appearance and Characteristics
Eugenists held varying views about the possible physical appearance and characteristics of super-people, as well as the implications of a super-race for society. Nearly all believed that super-people would be healthier, taller, more muscular, and more physically attractive. Some thought that super-people would have lower child mortality and life spans extending as much as 100 years. Many also expected that super-people would possess greater intelligence and social skills. While some eugenists predicted that a number of geniuses and great leaders would emerge from this superior stock, others thought that the race would experience a more general uplifting, with no increase in the rate of human stand-outs. Due to the prevailing belief that social problems originate from poor heredity, eugenists commonly thought that a superior race would produce social and moral improvements like fewer incidents of crime, violence, "violent eroticism," "extreme indolence," and divorce.

Several eugenists described at length the traits of a super-people and the outcome for a super-society. For example, Scott Nearing argued that the six core traits of a superman would be "physical normality, mental capacity, aggressiveness, concentration, sympathy, and vision." Dr. Ales Hrdlicka, curator of the division of physical anthropology at the National Museum in Washington, had perhaps the most precise projection. He believed that super-people would enjoy larger and more organized brains, greater height, longer legs, shorter arms, deeper-set eyes, thinner skulls, more prominent but narrower noses, smaller mouths, larger chins, smaller and fewer teeth, a tendency toward baldness, unaffected beards, thinner bodies, shorter intestines, narrower hands and feet, and diminishing fifth toes. Even so, man would be more handsome. But he would pay for these developments with greater mental disorders and physical impairments, until eugenics once again righted these defects.

Many eugenists maintained that these "improvements" wouldn't impact all races, classes, and genders equally. Unsurprisingly, their visions of the super-future corresponded to and reinforced the prevalent prejudices of the day. Hrdlicka predicted a "widening of the breach between the more civilized and backward people" and between "the front and the back ranks." He said, "There will always be masters and servants, the pioneers of progress and the drags." French scientist and professor Daniel Berthelot contended that as humans became more "advanced," human skin "evolved" into lighter shades. One day, super-people would have skin so white, it would reflect ultraviolet rays.

Naturally, men more than women would power the super-race. According to Prof. L. Bolk, the director of the Department of Anatomy at the University of Amsterdam, the development of the human skull had gradually slowed down, which had allowed the human brain to form over a longer period of time. Since boys mature more slowly than girls, their brains must develop more slowly, so men must be the superior sex. This trend would continue and intensify in the super-race; it would take men a long time to grow up, but they would be a formidable force when they did.

Even though supermen would, of course, eclipse superwomen, male scholars did not withhold their predictions for future women’s physical appearance. Dr. Richard Root Smith attested that “the imperfect or defective type of woman is . . . very slight, thin-chested, and nervous.” In contrast, superwomen would be “compact in build, deep-chested, with steady nerves and fleshy enough for the anatomical angles to be nicely rounded out.” Dr. A. J. Read, a professor of hygiene, told a race-betterment conference audience:

The ideal woman of the eugenic age will be taller than the average woman of today. She will be plump and well rounded, but not fat. Her complexion will be ruddy or brown, not pale, because the pale skin is a badge of disease rather than health.

Perhaps unusually for an Anglican priest, the Very Rev. William R. Inge predicted that clothes for both sexes would become more “scanty” such that “beauty [could] be recognized in the body and limbs as well as in the face.” It appeared that the perfect women of tomorrow would embody the ideal of the imperfect men of today.

Not everyone who supported eugenics in whole or in part believed that the creation of a super-race was possible or even desirable. Despite J. B. S. Haldane’s tendency toward biological determinism, he rejected the possibility of perfect people because he believed that society relied upon human diversity. In a 1932 interview with the New York Times, Haldane stated that in the ideal community, all people would be able to contribute their unique talents and would be afforded the opportunity to develop and thrive as individuals. Instead of altering people to fit an arbitrary notion of perfection, “the community should be fitted to the people of which it is composed rather than the misfits [fitted] to the community.” That certain people are considered “misfits” in our society, he said, does not mean that they wouldn’t be “happy members” if society were different.

Other individuals grappled with the outcome of achieving eugenic perfection. If we could indeed, through the proper breeding of the correct gametes of the right individuals, create nearly god-like people with greater concentration, thinner skulls, fewer teeth, whiter skin, rounder angles, and diminishing fifth toes, what then? What would happen to society after we had managed to—in the words of Scott Nearing—"model the plastic, living clay of humankind into nobler, finer, more spiritual forms"?

Not all observers were sanguine. Humor magazine Life offered this uncharacteristically serious picture in 1914:

The Eugenists dream of a race of Supermen and Superwomen. Let us dream of them, too. Imagine such a race suddenly created in the United States. Thirty millions of Superpeople—each one having the strength of Jack Johnson, the mental efficiency of Edison, the moral greatness of Lincoln. Meanwhile the economic scheme remains unchanged—a small class of Superpeople owns all the land and machinery, while the other Superpeople compete with each other for jobs. What about the Superpeople who don’t get jobs? Supermen in the breadline, Supermen piling into the Bowery Mission to get out of the wind and rain, Superwomen on the streets selling their bodies for bread, Supermen on the street-corners in the Supercold of a winter evening waiting for some Supermillionaire to give them the price of a night’s lodging. It is a pretty scene, and it provokes reflection.

This Life piece captured the fundamental objection to the attempted creation of genetic super-people: that eugenists were seeking answers to social problems inside human bodies instead of through social reforms. Eugenists believed that perfecting the human genetic code would create a healthier, more intelligent, more moral, and more perfect race of man, which would naturally improve the society in which it lived. However, opponents argued that even if we could collectively conceptualize health, intelligence, morality, and perfection and then operationalize these concepts in our genes, our success in this regard would have little bearing on problems that result from the societies we build, not the cells in our bodies. Moreover, encouraging unequal treatment and opportunity on the basis of a hierarchy that we claim is inscribed in human bodies is not a way to produce a more moral and just society. Creating a better world is more complicated than we hope.

During his interview with the New York Times, Haldane turned to passing scientist Dr. F. E. A. Crew of the Institute of Animal Genetics in Edinburgh and asked him, “What is the perfect man?”

Crew replied, “There isn’t any. Define us a heaven and we will tell you what an angel is.”

1. “Americans of the Future to Be the ‘Super Race.’” San Francisco Chronicle, Mar. 31, 1912.
2. “Brain Power Is Stationary.” Los Angeles Times, Jan. 1, 1915.
3. “Calls Thin Woman an Imperfect Type.” New York Times, Jan. 9, 1914.
4. “Case for Eugenics: Results Achieved Through the Use of Artificial Insemination.” New York Times, May 14, 1944.
5. Darwin, Leonard. “Babes of the Future: Major Leonard Darwin Tells True Purposes of Eugenics.” New York Times, Dec. 21, 1912.
6. “Eugenics As Basis of New Aristocracy.” New York Times, Aug. 8, 1915.
7. “Eugenists Dread Tainted Aliens.” New York Times, Sep. 25, 1921.
8. “Eugenics Is Urged to Lengthen Life.” New York Times, May 15, 1937.
9. “Eugenic Women to Be Tall and Dark.” Sacramento Union, Aug. 6, 1915.
10. “Hope of Better Brains for All.” New York Times, Sep. 27, 1912.
11. Hrdlicka, Ales. “Man’s Future in the Light of His Dim Past.” New York Times, Apr. 28, 1929.
12. “Human Race Improvement: Collecting Data for Plan of Practical Eugenics.” Los Angeles Times, May 12, 1912.
13. “Huxley Sees Life Prolonged in Future.” New York Times, Oct. 29, 1926.
14. Inge, Very Rev. William R. “Eugenics Will Aid Physical Beauty and Clothes Will Be More Sensible.” Los Angeles Times, Dec. 4, 1931.
15. Kaempffert, Waldemar. “The Superman: Eugenics Sifted.” New York Times, May 27, 1928.
16.  “Life’s Traits to Aid Eugenics.” Los Angeles Times, Nov. 30, 1914.
17. Laurence, William L. “Huxley Envisages the Eugenic Race.” New York Times, Sep. 6, 1937.
18. Laurence, William L. “Not a ‘Perfect Man’ in Haldane’s Utopia.” New York Times, Aug. 29, 1932.
19. P. H. D., in the Masses. “Eugenics and Economics.” Life, Apr. 2, 1914.
20. “Race of Super-Men.” Los Angeles Times, Feb. 12, 1914.
21. “Says Glands Cause Gloom and Crime.” New York Times, Oct. 2, 1921.
22. “Says Man Will Grow for Ages to Come.” New York Times, Apr. 20, 1929.
23. “Scientists Agree With Dr. Depew That Men Ought to Live to Be 100 By Observing Rules of Health.” Washington Post, Nov. 26, 1916.
24. “Scientists See Eugenics Aid in Doing Away With Crime.” New York Times, Jul. 29, 1923.
25. “Social Problems Have Proven Basis of Heredity.” New York Times, Jan. 12, 1913.
26. “Superman a Being of Nervous Force.” New York Times, Jan. 11, 1914.
27. “Supermen to Be Propagated Artificially, Says Biologist.” Los Angeles Times, Sep. 6, 1937.
28. “The Superrace: A Plea for the Evolution of That Rather Strange Production.” New York Times, Jun. 16, 1912.
29. Sutton, Ransome. “Some Born Great and Others ‘Out of Luck.’” Los Angeles Times, Jun. 25, 1933.
30. “To Breed Fine Race: W. [M]. Hays Would Begin By Classifying All People.” Washington Post, Dec. 30, 1911.
31. “Will Breed Men Like Fine Cattle.” San Francisco Chronicle, Oct. 20, 1912.

Previously on Biopolitical Times:

 Image via Wikimedia Commons

Hacking CRISPR: Patents, Gene Therapy & Embryos

Posted by Elliot Hosman on May 5th, 2016

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Bruiseless bananas, vegan cats, pig-to-human transplants, and super-muscular dogs: can you tell the real CRISPR projects from fake ones? It’s getting harder these days, as the latest generation of “gene editing” tools are not only (relatively) quicker, cheaper, and easier than any previous genetic engineering method, but have become “probably the fastest-spreading technology in the history of biology.” As it spreads, researchers the world over are discovering new hacks, complexities, and limitations for CRISPR. Here’s a round-up of recent developments in this booming arena.  

Trending globally: gene editing experiments with human embryos

On April 8, news broke that the second paper documenting CRISPR experiments in human embryos had been published. Researchers at Guangzhou Medical University sought to enhance nonviable embryos leftover from IVF with a naturally occurring mutation that confers HIV resistance: CCR5Δ32.

(Image via Wikimedia: Guangzhou Circle)

The experiments were largely unsuccessful: only 4 of 26 embryos wound up with a copy of the desired mutation, and none had the two copies that would be needed to resist the virus. Mosaicism was also a problem. A year prior in April 2015, the first research using CRISPR in tripronuclear human zygotes was reported by a team at Sun Yat-sen University in the obscure journal Protein & Cell, after Nature and Science turned it down. This second paper was reported in “an obscure reproductive journal” published by the American Society of Reproductive Medicine (the same body that releases non-enforceable guidelines into the void of any regulation over assisted reproductive technologies in the United States).

The research team acknowledged the controversial nature of their work amid ongoing debates:

We advocate preventing any application of genome editing on the human germline until after a rigorous and thorough evaluation and discussion are undertaken by the global research and ethics communities.…Despite the significant scientific and ethical issues involved, however, we believe that it is necessary to keep developing and improving the technologies for precise genetic modifications in humans.

Many found the latest CRISPR human embryos experiment to be ethically problematic in design and implication:

“Introducing CCR5Δ32 and trying repair, even in non-viable embryos, is just playing with human embryos.” – Tetsuya Ishii, bioethicist at Hokkaido University in Sapporo, Japan, Nature News

“The paper does not in my opinion strengthen the case that CRISPR’ing of human embryos with reproductive intent is ever something that could work well enough to be done clinically.” – Paul Knoepfler, associate professor of Cell Biology and Humanity at UC Davis School of Medicine, The Niche

“If you were serious about not wanting to go down this path where wealthy people are having children who have been genetically modified to have capacities that aren’t available to the children of poor parents, then the time to try and stop it is now.” – Robert Sparrow, associate professor at the Monash University Centre for Human Bioethics in Melbourne, South China Morning Post

A number of scientists commenting on the new publication distinguished its clear objective of refining human germline engineering for reproduction from the basic research goals of other ongoing CRISPR embryo experiments, including the HFEA’s February 2016 approval for Kathy Niakan’s embryo development research at the Francis Crick Institute in London. George Daley, stem-cell biologist at Children’s Hospital Boston in Massachusetts, categorized the new CRISPR embryo research as a “proof of principle for what would need to be done to generate an individual with resistance to HIV,” meaning “the science is going forward before there’s been the general consensus after deliberation that such an approach is medically warranted.”

“At least in the scientific community, I sense more support for basic-research applications," argued Fredrik Lanner, assistant professor at the Karolinska Institute near Stockholm, who was approved in June 2015 to use CRISPR in embryos to study early human development. In addition to UK and Sweden, a government bioethics panel in Japan on April 22 approved basic research using CRISPR in embryos, but denounced moving forward with clinical germline research.  

New tools and research for hacking the CRISPR patent war

Even as CRISPR investments, biomaterials, and research licenses proliferate internationally, the ongoing patent fight between prominent American universities has had a major impact on the landscape. Jacob Sherkow, associate professor of law at New York Law School, argues in Nature that “pursuit of profit poisons collaboration” and the “CRISPR-Cas9 patent battle demonstrates how overzealous efforts to commercialize technology can damage science” by pitting schools against one another and “erod[ing] scientific collaboration.”

Shobita Parthasarathy, associate professor of Public Policy and Women's Studies at University of Michigan, puts forth two important lessons. First, she argues that “patent systems no longer fit the realities of how science works, and patents give their owners significant control over the fate and shape of technologies.” She also notes that licensing decisions by CRISPR patent holders may subjugate democratic deliberation over “what kinds of research will take place in embryos … [and] what kinds of human genetic engineering might become commercially available.”

Meanwhile, researchers are publishing tweaks and upgrades to CRISPR-Cas9 on a near-weekly basis, causing observers to wonder if the patent fight will soon become a moot point—a “historical footnote.”

Recent CRISPR breakthroughs, setbacks, and related research include:

Gene Editing à “Base Editing”

On April 20, researchers reported they had engineered CRISPR to perform edits not just to a genetic sequence but to individual letters of DNA, changing “C” to “U” (“U” is usually found in RNA and is read as “T” in DNA).

(Image via Pixabay)

The lead author of the new "base editing" research, Harvard biochemist David Liu, is a co-founder and scientific advisor at Editas Medicine, the first CRISPR company to go public. Excitement surrounding the new hack led many to speak freely about the limitations of CRISPR, including Harvard biologist George Church who observed “what often passes as ‘genome editing’ would more appropriately be called ‘genome vandalism’” because, as STAT’s Sharon Begley writes, the “molecular machete” triggers the “cell’s DNA-repair machinery to make all sorts of unwanted changes.” While this new base editor method is being described as “pinpoint precision” and the “most clever CRISPR gadget” thus far, it’s unclear to many researchers what its usefulness or application will be moving forward.

Attempts to wipe out HIV with the CRISPR gene editor only made it stronger” [Source]

A number of researchers have been excited about the potential of CRISPR to deliver a long-sought cure for HIV—in living patients. Using an older gene editing method known as Zinc Finger Nucleases to snip out the CCR5 gene linked to HIV resistance, Sangamo Biosciences (Richmond, CA) is one of a group of biotech companies investigating HIV somatic gene therapies. On April 7, researchers working with CRISPR published some sobering data which showed that using gene editing to disable the HIV virus backfired, as the virus developed mutations near the sites of cuts which blocked RNA-guided CRISPR from making more cuts needed to disable the virus. A number of researchers still have hope for CRISPR providing a one-and-done fix. Some aim to use CRISPR to “carpet-bomb HIV” at multiple sites at once. Others are skeptical about the practicality of CRISPR-ing HIV, given the virus’ renowned resistance, the number of T cells that need to be successfully modified, and the existence of pre-exposure and post-exposure antiretroviral drugs that are being used to manage the disease with increasing success.


A week later on April 27, researchers laboring under the weight of compelling acronyms reported a new CRISPR method dubbed “CORRECT” (COnsecutive Re-guide or Re-Cas steps to Erase CRISPR/Cas-blocked Targets). Given the messiness of the CRISPR-Cas9 system, the research seeks to enable two new capabilities: stopping Cas9 from cutting again and again, and editing one but not both copies of a target gene. Scientists reacting to the news noted with caution that the CORRECT hack requires inserting three to twenty times the number of molecules into cells as does traditional CRISPR. (Others have previously noted delivery challenges with CRISPR due to the comparatively large size of the Cas9 protein.)


In a new profile, Nature News describes CRISPR co-discoverer Emmanuelle Charpentier as a “quiet revolutionary” who is looking “not to be defined by CRISPR, which is just one of five themes in her lab.” Charpentier’s latest CRISPR research suggests that an associated protein smaller than Cas9 known as “Cp1f1” can cleave RNA in addition to DNA, and “can do the jobs of both tracrRNA and the Cas9 protein.” The CRISPR-Cp1f1 method was first reported by Charpentier’s patent adversary Feng Zhang in September 2015.

Buffer “Superhero” Genes

Headlines recently proclaimed:

The story was that researchers had worked through almost 600,000 human DNA sequences—the majority from 23andMe users—and found 13 profiles whose medical records showed a lack of symptoms despite the fact they carried a genetic mutation linked to one of eight Mendelian diseases. The researchers have no way of contacting the individuals to confirm their “superhero” status, but the study has excited some researchers about the potential gold to be found at the end of the precision medicine rainbow: a deus ex machina buffer gene to fight monogenic disease. As several observers noted, these “lucky 13” could also lead to dashed hopes at the human margins of sequencing errors.

The genetic unicorns study conjures a handful of philosophical questions relevant to the future of gene editing: What are the biological mysteries that determine phenotype beyond genetics? What are the implications of widespread embryo screening for genetic conditions when false positives are rampant and embryo mosaicism is  poorly understood? What unknown unknowns in the realm of genetic mysteries might forestall the precise genetic modification of future human beings? What known social and political realities caution against gene editing future generations regardless of technical safety?

Resisting genetic determinism, embracing scientific modesty & democratic futures

Creative and potentially exciting, recent CRISPR and related research papers speak to the vast ocean of biological uncertainties that face those venturing into the genome with the intention of divining the cut-and-paste malleability of the human condition. On the eve of a major annual meeting on gene therapy in D.C. on May 4-7, Jocelyn Kaiser writing for Science culled a long list of additional obstacles for researchers to overcome in an article titled “The gene editor CRISPR won’t fully fix sick people anytime soon. Here’s why.”

What harm can a bit of enthusiasm do? For starters, unchecked techno-optimism frustrates the scientific enterprise. It also thwarts the funding of basic public health measures whose impact would be felt more broadly, beyond the upper echelons of biomedical access.

Several recent articles have explored these and related concerns. Columbia law professor Patricia Williams cautions against “a rat race to the patent office, a lunge to own all parts of the genome… A race against time. A race to market. A race to better babies.” As piecemeal gene editing innovations move forward, their value may be difficult to discern over the blaring refrains of the industry hype machine.

Jonathan Latham recently pointed to the “gospel of precision” floating the sails of the CRISPR moonshot and argued for historically minded caution:

The hubris is alarming; but the more subtle element of the propaganda campaign is the biggest and most dangerous improbability of them all: that CRISPR and related technologies are “genome editing”…That is, they are capable of creating precise, accurate and specific alterations to DNA …

Why is this discussion of precision important? Because for the last seventy years all chemical and biological technologies, from genetic engineering to pesticides, have been built on a myth of precision and specificity. They have all been adopted under the pretense that they would function without side effects or unexpected complications. Yet the extraordinary disasters and repercussions of DDT, leaded paint, agent orange, atrazine, C8, asbestos, chlordane, PCBs, and so on, when all is said and done, have been stories of the steady unraveling of a founding myth of precision and specificity.…

[W]e are once again being preached the gospel of precision. But no matter how you look at it, precision is a fable and should be treated as such.

As with many “disruptive” technologies in biotechnology, CRISPR pipedreams are rapidly assembled, dismantled, reassembled; moonshots are breathlessly announced, then fail to rise, then quietly recalibrate.  A world cleansed of genetic disease is repeatedly cast as the carrot to be dangled before an American public starved for more basic health investments. Will the CRISPR revolution bring vegan cats? Who decides what the future of (synthetic) biology looks like?

Previously on Biopolitical Times:

Image via Pixabay

10th Anniversary Baby Markets Congress

Posted by Elliot Hosman on April 7th, 2016

Baby Markets: Money and the New Politics of Creating Families (Cambridge University Press 2010, 1st ed., ed. Michele Goodwin)

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“We can only assess the justice of baby markets by stripping away the veneer of ‘freedom,’” said Dorothy Roberts at the Baby Markets International Congress, which met April 1-3 in Southern California. The meeting celebrated the 10th anniversary of the Baby Markets Roundtables series founded by Michele Goodwin, Chancellor’s Professor at UC Irvine Law School, author of Baby Markets (2010), and founder of the Center for Biotechnology and Global Health Policy.

For three days, panelists and participants engaged with assisted reproductive technologies (ARTs), reproductive justice, contractual parentage and procreation relationships, genetic testing and selection of embryos, gestational and transnational surrogacy, in vitro fertilization, abortion laws, constitutional rights to procreation and assisted reproduction, LGBT access to adoption and ARTs, selective reduction, and fertility professional negligence.

@DorothyERoberts "baby markets aren't free" keynote address at #BabyMarkets2016 @UCILaw @UCIrvine @Penn pic.twitter.com/7K9AC45Joo

The keynote address by Dorothy Roberts, professor of law and sociology at the University of Pennsylvania and CGS advisory board member, painted a rich picture of the complex systems of oppression that backdrop free trade reproduction. Roberts highlighted the wide-ranging reproductive injustices of abortion bans, neoliberal public healthcare disinvestment in the United States, dependency courts and disruptions of families of color, and centuries of ongoing racism that make it impossible for baby markets to be “liberating” for women of color.

Roberts also reflected on the “new eugenics” that pressures parents to make “the right genetic decisions,” leading to the widespread use of pre-implantation genetic diagnosis to select against disability, and the support of a few enthusiasts to attempt next-generation genetic engineering with CRISPR-Cas9 to “edit” the traits of future children. Roberts concluded that debates on the ethics of commercial assisted reproduction must center the people hurt most by market logics: people of color, disabled persons, transgender and intersex persons, and people acting as surrogates. “We can’t solve social problems with better technology,” she said. 

Marcy Darnovsky
, executive director of CGS, and Radhika Rao, professor of law at UC Hastings, separately introduced emerging technologies in reproduction that heighten a number of ongoing concerns about eugenics, informed consent, and elite access to what Roberts earlier referred as a “reproductive caste system” of “built” children. These new technologies include egg freezing, uterine transplants, gametogenesis (stem cell-derived artificial gametes), and CRISPR-Cas9 germline gene editing.

The ART Working Group’s Reproductive Justice panel

The ART Working Group, a collaborative effort between CGS and the Pro-Choice Alliance for Responsible Research (PCARR) that grew out of The Tarrytown Meetings, organized a panel introduced by CGS consultant Emily Galpern that focused on reproductive justice insights into assisted reproduction. UC Davis Professor of Law and CGS fellow Lisa Ikemoto discussed her research on egg providers and the “repro-stratification” of eggs based primarily on race. She noted that “currently we use ARTs to reproduce the nuclear family,” instead of collaborative reproduction marked by reciprocity and kinship.

PCARR co-founder Susan Berke Fogel gave an overview of reproductive justice, focusing on the centrality of women of color in the movement, and the shift away from the reproductive rights conversation about “choice” and privacy toward a holistic understanding of “justice” that looks at oppression and intersectionality, and that doesn’t privilege reproductive rights over other rights. 

Daisy Deomampo
, assistant professor of anthropology at Fordham University, presented research looking at surrogacy and the treatment of intended parents and gestational surrogates in India as a site of racialization that isn’t just “reflective” of oppressive racial hierarchies in the world, but which produces race. She noted that reproductive justice seeks to change structural inequalities, instead of liberating individuals from experiencing them.

Regina Tamés Noriega
from the Grupo de Información en Reproducción Elegida (GIRE) in Mexico discussed the recent expansion of transnational surrogacy in Tabasco and Cancún. She described policymakers’ sudden focus on regulating surrogacy despite their lack of interest in regulating other forms of assisted reproduction, potentially because it represents a way to control women’s bodies.

Reproductive Justice Film Festival

The 10th Baby Markets Congress also included a Reproductive Justice Film Festival. Three documentary films were screened during the weekend: 

Misconception (forthcoming), dir. Civia Tamarkin, showcases the “collateral damage” and “friendly fire” of the abortion wars, and the political indoctrination of youth into the anti-abortion movement.

Young Lakota (2012), dirs. Rose Rosenblatt and Marion Lipschutz, follows three youth living on the Pine Ridge reservation of the Oglala Sioux tribe who experience political awakenings around the issue of abortion.

Beautiful Sin (2014), dir. Gabriela Quirós, documents the political battle around embryo personhood and assisted reproduction in Costa Rica. A ban on IVF that passed in 2000  was finally lifted by a presidential decree ruled valid by the Inter-American Court on Human Rights in February 2016.

Thank you!

We learned so much from the fascinating papers, discussions, and research presented by the scholars, policy-makers, civil society advocates, journalists, and activists in attendance. Thanks to Michele Goodwin and all the participants!

About the Baby Markets Organizer and Sponsors

Michele Bratcher Goodwin
’s research engages law’s interaction with the body across multiple spheres, encompassing organ transplantation, reproduction, tissue harvesting, sex and marriage trafficking, and international surrogacy, among other topics. Goodwin recently edited The Global Body Market: Altruism’s Limits, published in 2013.

The International Congress was supported by generous contributions from the University of California, Irvine Medical Humanities Initiative, School of Law, and donors: Greg Rose and Pat Wilson, and co-sponsorsCenter on Globalization, Law, and Society (GLAS)Department of Criminology, Law and SocietyDepartment of Gender and Sexuality StudiesProgram in Public HealthReproductive Justice Initiative; and School of Social Ecology.

Previously on Biopolitical Times:

Canadian Eugenics Survivor and Activist Leilani Muir Dies at Age 71

Posted by Natalie Oveyssi on April 7th, 2016

Leilani (O'Malley) Muir, a survivor of the Sexual Sterilization Act of Alberta, Canada, passed away on the weekend of March 12 at the age of 71.

Following an abusive childhood, Muir’s mother committed her to Alberta's Provincial Training School for Mental Defectives at the age of eleven, falsely claiming that she had cognitive disabilities. The Sexual Sterilization Act of Alberta allowed the province to sterilize any ward of a mental health institution whom its Eugenics Board considered "mentally defective" and at risk of transmitting “defective genes” to future children.

Under this act, nearly 3,000 residents of Alberta were sterilized between 1928 and 1972, when the law was finally repealed.

When she was fourteen years old, Muir was brought before the Provincial Eugenics Board and briefly questioned. After this session, the board recommended sterilization, citing as the reason "Danger of the transmission to the progeny of Mental Deficiency or Disability, also incapable of Intelligent parenthood."

Told doctors would be removing her appendix, Muir was sterilized without her knowledge. She only learned what had happened to her many years later when she and her husband were unable to conceive a child.

She grew determined to achieve justice for herself and others impacted by forced sterilization. In 1996, Leilani Muir became the first individual to sue the Alberta government for wrongful sterilization. She won her case, Muir v. The Queen in Right of Alberta, in a judgment that stated:

The circumstances of Ms. Muir's sterilization were so high-handed and so contemptuous of the statutory authority to effect sterilization, and were taken in an atmosphere that so little respected Ms. Muir's human dignity that the community's, and the court's, sense of decency is offended.
Muir's case served as a precedent for many more lawsuits against the Alberta government on behalf of hundreds of survivors of eugenic sterilization. All told, the government paid more than $80 million to over 800 survivors.

In the years following the court decision, Muir became an advocate for other sterilization survivors and for the rights of people with disabilities. She continued her quest to educate the public about the history of eugenics in Canada. Muir wrote a book about her life called A Whisper Past, gave talks around the country, appeared in several documentaries and television programs, and even ran for a seat on the Alberta legislature in 2000 as a New Democratic Party candidate. Muir was recently featured in the 2015 documentary Surviving Eugenics which documents the survivor narratives of Alberta’s provincial schools.

Muir said of her experiences:
When I was born, God made me a whole person. When they sterilized me, they made me half a person. You never get over that hurt. . . . I don't want this to ever happen again to other children. My philosophy is that history repeats, but as long as I keep talking about it, it will not happen again.

Leilani Muir will be remembered for her courage to speak out, her strength to fight, and her determination to seek a more just world.

More information:

1. About Leilani, Leilani Muir: My Story Will Inspire You.

2. Dambrofsky, Gwen. Alberta woman who successfully sued province for wrongful sterilization dies, Global News, March 16, 2016.

3. Eugenics, Canada's Human Rights History.

4. Muir, Leilani. A Whisper Past: Childless After Eugenic Sterilization in Alberta. Victoria, BC, Canada: Friesen Press, 2014.

5. Muir v. The Queen in Right of Alberta. 132 D.L.R (4th) 695. Court File No. 8903 20759 Edmonton. Alberta Court of Queen's Bench. Veit, J. January 25, 1996.

Previously on Biopolitical Times:

Dinosaurs are Extinct, but Normalization is Alive and Well

Posted by Emily Beitiks, Biopolitical Times guest contributor on March 22nd, 2016

My son hugs a stuffed dino. (Kachine Blackwell, used with permission.)

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This article was cross-posted on Disability Remix, the blog of the Paul K. Longmore Institute on Disability at San Francisco State University.

Lately, I’ve been learning a lot about dinosaurs. Or, I should say, my three-year-old son has been learning a lot about dinosaurs, and I have been caught in the crossfire. My mind is often churning to relate any new information I take in to my own passion of disability studies. I didn’t expect to find a link to dinosaurs… but I did.

Dinosaur science has advanced remarkably since my childhood. (Did you know, for example, that scientists now believe many dinosaurs had feathers?!)

But while our notions of what dinosaurs could have been is constantly evolving, we still cling to certain tenets of what I like to call “dinosaur normalization.” (I haven’t lexis-nexis’d it, but I think you just witnessed the birth of a completely original school of academic thought!)

Dinosaur normalization is the idea of prescribing what dinosaurs would have been like based on our own narrow worldview.

For a quick example of dinosaur normalization, when scientists first discovered the Iguanodon (see right), they assumed he had a rhino-like horn on his nose. After further skeleton discoveries, it turns out the Iguanodon actually has two horn-like thumbs, something we’ve never seen before.

But you don’t have to be an obscure dinosaur like the Iguanadon (that only three-year-olds and their parents are likely aware of) to be a victim of dinosaur normalization.

Here’s a children’s song about the stegosaurus:

My name is stegosaurus,
I’m a funny looking dinosaur….
My front two legs are very short.
My back two legs are long.
My body’s big, my head is very small
I’m put together wrong!

You know… a little judgmental. Plus, if the stegosaurus is “put together wrong,” isn’t that kinda our bad since we literally put them back together?

But even the almighty T-Rex is not spared from the hammer of normalization. There’s a general fascination with the T-rex’s tiny arms, each with two small claws. Many books ask: why did such a ferocious beast have such puny, useless arms? One fictional children’s film that I watched recently spent a solid 30 seconds joking at the t-rex’s expense.

When the newest movie in the Jurassic Park franchise was released, I was itching to see it for it promised a genetically modified dinosaur. I don’t condone genetic modification, but I thought this premise was brilliant, as it would allow the filmmakers to take all the scariest parts of dinosaurs and jam them together (which, inevitably, makes a really strong argument against genetic modification). Much to my surprise (and many other disappointed fans), the resulting dinosaur mostly just looked like a t-rex with longer arms and a full hand of claws. Sure, it had a few other hidden tricks but if you freeze-frame the film, that’s it. It’s as if there were a bunch of dino-fans who were sitting around saying, “I’m not afraid of the t-rex because its got those tiny arms. But if you had a t-rex with proportionate arms, well, now that’d be scary!”

There’s so much we are still learning about the t-rex. Scientists are now hypothesizing that the tyrannosaurus rex might not have made the ferocious roar we think of from the movies, but something more like a loud bullfrog croak. There’s also a lot of uncertainty about how fast the t-rex runs. Just yesterday even, an article announced the discovery of a pregnant t-rex, which is providing new data on egg-laying. So why aren’t we culturally more open to exploring what purpose the t-rex’s tiny arms might have served?  The paleontologists are, but the children’s books and films don’t seem to be.

The disability rights movement pushes us to rethink our assumptions about how the body is supposed to look and what the body is capable of. Many disabled performance artists celebrate how their bodies are “put together wrong” to show us what the anomalous body can do once you embrace creativity and challenge bodily assumptions (see, for example, the many examples in Sins Invalid’s film An Unashamed Claim to Beauty). While the disability movement is pushing us away from normal, our dinosaur education for our kids lags behind.

Everything about dinosaurs is so totally not normal. When I stop and think about dinosaurs, the t-rex’s tiny arms and the stegosaurus’s small head seem so completely uninteresting compared to how bizarre it is that there were dinosaurs like this once living in North America:

Or knowing that this dinosaur-relative once swam in our oceans…yikes!

That our normalizing tendencies have extended to a species from over 65 million years ago shows us just how far our counter-efforts to take down normalcy must also go.

I’m going to encourage my kid not to think twice about the t-rex’s small arms. That’s just how they look, and from what we know about the t-rex (his FAVORITE dinosaur), they were pretty bad-ass, small arms or not.

*Believe it or not, this is actually the second blog by someone at the Longmore Institute with a connection to dinosaurs. Read the other, about Pixar’s access features in The Good Dinosaur, here.


Emily Beitiks is Associate Director of Paul K. Longmore Institute on Disability at San Francisco State University, and a former staffer at CGS. Beitiks earned her Ph.D in American Studies from the University of Minnesota with the dissertation "Building the Normal Body: Disability and the Techno-Makeover". 

Images via Wikimedia, Creative Commons.

Genetic Issues at the London Sperm Bank

Posted by George Estreich, Biopolitical Times guest contributor on January 22nd, 2016

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On December 29th, 2015, the Guardian reported that the London Sperm Bank is being investigated for discriminating against people with disabilities. The bank had turned away a man with dyslexia; it had published a 2010 pamphlet with a long list of disqualifying “neurological diseases,” including dyslexia, autism, ADHD, and other conditions.

Vanessa Smith—described as a “quality manager at the JD Healthcare Group,” the bank’s parent organization—defended the bank. Backpedaling without budging an inch, she said that the pamphlet had been withdrawn and policies would be reviewed. Still, little seems likely to change. According to Smith, “We are looking for someone who is medically clear of infectious diseases and genetic issues that may possibly be passed on to any resulting child.” She also claimed, “We definitely don’t work in eugenics.” She may mean something like, “In the popular mind, ‘eugenics’ is associated with Nazis, an association we wish to avoid.” But to shape future children, based on a policy that describes human variation as disease, is by definition eugenic. The bank’s currency is genes, and it wants good ones.

Smith’s grouping of “infectious diseases” with “genetic issues” is significant. Both are disqualifiers: in the view of the London Sperm Bank, they make the sperm unsuitable to produce a future human being. In the Guardian article, people with dyslexia were quoted, questioning the Bank’s criteria. My interest is less in the specific items on the list, or in the need for one—of course a prospective mother would prefer to have a child free of, say, hepatitis-C—than in the neutral, euphemistic vagueness of the phrase genetic issues, and the way it tends to pathologize human variation. (When I think of our rapidly increasing, fine-grained knowledge of human genetic variation, and the pressures that turn said variations into Issues, I imagine the pans of a giant balance. On one side is the gigantic and growing pile of genomic data, and on the other side is an equally gigantic but correspondingly undifferentiated idea, a blobby sense of abnormality stuffed into a neutral-sounding word, like issues. Even as we generate specificity, we generate vagueness, ideas and words capacious enough to suggest all that is different from an undefined norm, and therefore undesirable.)

Specifics imply caring. To lump together a vast array of conditions as “genetic issues” suggests an unconcern about the radical differences between said conditions, and a lack of interest in exploring the question. (Of course, the ability to predict and select makes precisely those explorations necessary.) Conversely, the pamphlet is obsessively specific about Different Brains, even to the point of redundancy: forbidden are ADD and ADHD, autism and Asperger’s (yes, a special Not Welcome Mat is spread out for you, high-functioning Different Person), and both “mental retardation” and Down syndrome. Since men with Down syndrome are thought to be sterile, the prohibition seems—well, let’s just say it’s on the cautious side.

Disease and disability are different but overlapping categories. There is no tidy division between them. But the (evolving) criteria of the London Sperm Bank pathologize pretty much everything not nailed down. Autism is not a disease. Neither is dyslexia. Neither are unambiguously genetic, in the way that Tay-Sachs or Down syndrome is. Cerebral palsy can occur without genetic influence at all. But since these conditions may have a significant genetic component, they’re on the list. This is the one-drop rule for the new millennium: any hint of a disorder that may or may not be genetic is, in this scenario, sufficient to disqualify its bearer. The London Sperm Bank’s approach to human difference can be thought of in terms of Russian nesting dolls: inside Difference is Medicalization, which opens to reveal Geneticization.

We are always thinking/not thinking about disability, it is always just beneath the surface of our days and discussions, and I am interested in the places where our ideas break into the open. Discussions of future humans provide one place: they are virtual arenas of the normal and abnormal, where our assumptions bubble up to the surface. Because we seem to be discussing only the prospect of dyslexia or mental illness, and not specific people with those conditions, no actual person appears to be directly harmed. We are only discussing an A vs. B scenario, one where A (a future human without dyslexia) appears clearly preferable, the better choice. All other things being equal, that is.

This is flawed for several reasons, the first being that all things are never equal; the second being that we are talking about present people with dyslexia when we imply dyslexia is serious enough to disqualify a future person; and the third being that actual people with different brains are being discriminated against in the present: in the minor way of not being allowed to donate to a specific sperm bank, and in the major way of being publicly described as lesser humans, as unwelcome.

George Estreich received his M.F.A. in poetry from Cornell University. His first book, a collection of poems entitled Textbook Illustrations of the Human Body, won the Gorsline Prize from Cloudbank Books. His memoir about raising a daughter with Down syndrome, The Shape of the Eye, was published in SMU Press’ Medical Humanities Series. Praised by Abraham Verghese as “a poignant, beautifully written, and intensely moving memoir,” The Shape of the Eye was awarded the 2012 Oregon Book Award in Creative Nonfiction. Estreich lives in Oregon with his family.

Previously on Biopolitical Times:

Image via Pixabay

Top Biopolitical Times Posts of 2015

Posted by Elliot Hosman, Pete Shanks & Marcy Darnovsky, Biopolitical Times on December 20th, 2015

In 2015, CGS staffers and guest contributors posted 80 blogs at Biopolitical Times. Some were syndicated on our guest blog at Psychology Today, Genetic Crossroads.

Fourteen of our favorite posts plus a series by CGS staffers are shown below in chronological order. Scroll down for posts by our wonderful guest contributors.


Contributors and Fellows

A number of remarkable guest bloggers on Biopolitical Times contributed their commentary on a wide variety of issues during 2015. Not much for choosing favorites among our friends, we do want to extend our appreciation for their time and perspectives. In alphabetical order:

George Annas on inheritable genetic modification: The Moral Imperative for Psychologists

Naomi Cahn on donor gametes:The Rights of Donor-Conceived Offspring

Katayoun Chamany on precision medicine: New Rules Proposed to Address Privacy and Trust in the Precision Medicine Initiative

Nathaniel Comfort on inheritable genetic modification: Putting Ourselves in Harm's Way: Thoughts on Pinker and the Role of Bioethics

Colleen Cordes on synthetic biology: DIY Bio-Engineering: Disrupting Democracy

Gwen D’Arcangelis on biosecurity: U.S. Bioweapons Research: Are Anthrax Lab Accidents All We Have to Fear?

Sayantani DasGupta on donor gametes: Why Facebook’s Egg Donor Ads Freak Me Out (And Should Freak You Out Too)

George Estreich on genetic screening: FDA Regulation and Early Prenatal Testing; de-extinction: Of Clocks and Mammoths: The Pitch for De-Extinction; new film releases: Ex Machina: Of Screens and People; and inheritable genetic modification: The Rhetorical Two-Step: Steven Pinker, CRISPR, and Disability

Jaydee Hanson on eugenics reparations: Virginia Votes Compensation for Victims of its Eugenic Sterilization Program

CGS Fellow Lisa Ikemoto on CRISPR/Cas9: Fast Forward-Pause-Stop: The 3-Speed Human Germline Debate; and donor gametes: “High IQ Eggs Wanted” – ads appeal to ego and altruism, offer $10,000

Ricki Lewis on genome sequencing: Universal Newborn Genome Sequencing and Generation Alpha

CGS Fellow Gina Maranto reviewing Deborah Lynn Steinberg's Genes and the Bioimaginary: Genetic Facts, Genetic Reality, Genetic Imaginaries; on precision medicine: "Moonshot Medicine": Putative Precision vs. Messy Genomes; and egg retrieval: Seeking Your Input: Survey on Egg Retrieval

Stuart Newman on inheritable genetic modification: Pinker's Damn: A Naive Rejection of Controls Over Genetic Engineering

Weak Arguments For Modifying the Human Germline

Posted by Pete Shanks on December 10th, 2015

John Harris

At last week’s International Summit on Human Gene Editing, philosopher John Harris made the case for heritable human genetic modification. According to three reliable sources with previous experience of the Manchester-based Harris, he did so in a significantly more understated manner than usual.

One is compelled to conclude that in mid-season form, his act lacks only a red nose and a dancing bear to qualify for an old-fashioned circus (which the Summit was not). Straw men blazed under the withering scorn of his sarcastic ridicule (unlike Monty Python's Doug Piranha, litotes seems not to be part of his arsenal). Some of his gags are so old and trite that I remember them from my own childhood, and at least one particularly sexist poke has been rolling around for 90-odd years. Talking points that should long have been left to rot in peace were exhumed and animated as if by Dr. Frankenstein himself.

OK, enough. A little comedy is fine, but it should be a seasoning, not the main dish.

Video of his performance can be found here (Day 1, Part 3). (Deaf activists pushed for captioning but there’s none on the archived version.) There seems to be no official transcript, but I had access to an audio recording. Much of the talk was included in two preprints he handed out, and also in this peer-reviewed article and this Op-Ed. The italicized numbered headings are accurate paraphrases of Harris’ comments, and all quotations have been checked.

Attempting to Rebut the Objections

Harris began by listing, and attempting to counter, what he understands to be three principal objections to human germline interventions that are “very obvious and obviously fallacious and dogmatic.” In brief, they are: these affect future generations; the risks to future generations are unacceptable; and consent from future generations cannot be obtained. On all three, his characterizations and counter-arguments are, to put it politely, seriously flawed.

Read more

Stem Cell Researcher to Reddit: "Ask Me Anything" on Human Genetic Modification

Posted by Elliot Hosman, Biopolitical Times on December 10th, 2015

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Paul Knoepfler is a stem cell and genetics researcher at UC Davis who works with CRISPR on in vitro research in stem cells and cancer. He writes and blogs widely about developing issues in genetics and genomics, and has been particularly prescient about the emerging human genetic modification controversy. Paul will be interviewed by Nathaniel Comfort early next year (stay tuned for the exact date) in our online interview series Talking Biopolitics about his forthcoming book GMO Sapiens: The Life-Changing Science of Designing Babies [Amazon, World Scientific].

Before the International Summit on Human Gene Editing co-organized by the National Academies in D.C. on December 1-3, Paul published an article in Slate titled We Need a Moratorium on Genetically Modifying Humans and gave a TED Talk in Vienna on the pressing concerns raised by CRISPR-Cas9 “gene editing” and its controversial proposed use in human reproduction.

On December 7, Paul engaged with online forum community Reddit’s celebrated feature Ask Me Anything (AMA) and fielded hundreds of pressing questions about the promise and peril of CRISPR-Cas9 “gene editing” embryos and gametes for reproduction. Some of the questions posted by Redditors online related to the current technical capacity of precise genetic engineering: What is currently possible with “gene editing” tools? What genetic conditions could be targeted? How soon until I can have a baby unicorn child? The short answer to all of them, echoed by Broad Institute director Eric Lander at the #GeneEditSummit, is: We are still learning the genetics behind complex traits, and at this point the science has not caught up to our imaginations. But it is the range of non-technical questions related to this radical technology that have many, including Paul, working to involve the public in this crucial debate.

In setting the stage for the dialogue, Paul posited a range of questions on the societal implications of precise DNA engineering in the global laboratory, including:

  • [A]re we ready to make genetically modified people (what I call GMO sapiens as a mashup of Homo sapiens and GMO)?
  • Is it OK to do this for trying to prevent genetic diseases? What about for human enhancement via designer babies? Could we draw the line between the two? …
  • Are past works of art like Brave New World and GATTACA now appropriate to discuss as human genetic modification appears to be marching toward reality? Or is that just going to scare people?
  • What about eugenics turbo-charged by new technology?
  • How do we find the right balance in discussion of this revolutionary issue so that we do not freak people out, but at the same time we have a real discussion that doesn’t sugar coat things or dodge real potential issues? (formatting added)

Here is a small selection of questions and answers from the AMA that strike at the variety of concerns raised by genetically modifying human cells for reproduction.


[frankstandard] Q: “I've been interested in CRISPR since hearing about it on Radio Lab a few months back, so it was exciting to see you here! My question: Dr Stephen Hawking recently highlighted that we don't really have to fear robots in the future, but rather Capitalism and the societal structures that will create greater inequality, stating, ‘If machines produce everything we need, the outcome will depend on how things are distributed. Everyone can enjoy a life of luxurious leisure if the machine-produced wealth is shared, or most people can end up miserably poor if the machine-owners successfully lobby against wealth redistribution. So far, the trend seems to be toward the second option, with technology driving ever-increasing inequality.’ Can you please comment on this related to CRISPR and the potential for it to create more inequality due the current structure of society?”

[PaulKnoepfler] A: “This kind of concern is legit and it applies to any kind of technological advancement. A disruptive, powerful technology like CRISPR has already got the attention of investors to the tune of potentially $1-$2billion USD. They are going to want a return on their investment. Human modification, whether for disease prevention or enhancement, is unlikely any time soon after (or if) it is proven safe and effective to reach a diverse group of patients of different socioeconomic classes. There are risks for active class strife as well through eugenics too. These are issues we should be actively discussing, but too often they aren't on the table.”

[reddevilit] Q: “Can this be used to "cure" certain genetic syndromes like the Costello syndrome, by enabling/disabling specific protein or gene?”

[PaulKnoepfler] A: “That is the hope, but rather than using the word "cure" which implies a pre-existing person/patient, I think the more accurate word to use is "prevent". If you make a designer baby with a corrected mutation then there was no disease to start with to cure. Just something that was prevented.”

[CybernewtonDS] Q: “…Given how expensive medical treatments in the US are mostly inaccessible to working-class individuals, what social safeguards will we have in place to ensure little Timmy and dear Sally are free from Huntington's, Tay-Sachs, and Down Syndrome? The greatest fear here is not that the wealthy will have smarter and healthier offspring, but that those without the means to afford any corrective procedures will bear the brunt of bills and burdens of untreated genetic disorders.

[PaulKnoepfler] A: “Socioeconomic issues are relevant and important here. As with any expensive medical produce (thinking for the moment only about non-enhancement uses for human genetic modification) there could well be disparities and issues of access.”

[wiizbiiz] Q: “Dr Knoepfler, I'm a person with hemophilia deeply involved in education and activism within the bleeding disorders community. The entire community has been watching the field of genetic engineering very carefully, and lots of people are very excited about the incredible innovations that CRISPR makes possible. At the same time, however, the hemophilia community has an incredibly troubled history when it comes to medical innovation and securing access to safe and affordable treatments. During the 70s and 80s thousands of hemophiliacs died of HIV and Hep C contracted from tainted blood products while the factor companies and FDA failed to warn us, and today those very same companies who create our meds in the 80s have used every trick in the book to ensure that factor prices remain exorbitantly high. In view of this history, my question for you is a personal one and not necessarily a professional one. What are your biggest concerns about CRISPR's application, and do you think that the world economy is structured in such a way that it's ready for CRISPR? If not, why and what needs to be done?"

[PaulKnoepfler] A: “Hi, Thanks for sharing your story and that of your community. I really admire those who work on education and are patient activists. Commercial interests is a big issue with CRISPR that wasn't discussed much at all at last week's National Academy Summit that I attended. Some have patent applications and companies focused on CRISPR. Clearly investors view CRISPR as a potential big source of profit. How will the money side of things influence the evolution of this technology? I don't know for sure, but there is likely to be a strong influence. How will the FDA handle CRISPR? I'm not sure, but it is unlikely to be able to do much in advance. We need to view this very cautiously and avoid hyping the potential clinical applications. I was disappointed that the Summit failed to recommend a moratorium on clinical use because I think there are quite some risks here both to individuals and to society. There's real potential too. We need a balanced, democratic discussion on all of this that includes the public. So far that hasn't happened. The main driving force for me to write my new book was to educate people and spark discussion because there are huge issues here.”

[Jayrobinson92] Q: “Hello! Thanks for doing this AMA. I'm really glad you mentioned the movie GATTACA, that was the first thing I thought of when I started reading this post. When watching that movie I honestly felt like I was looking at the future. What is your opinion? Do you think we're potentially headed to a future where genetic predisposition can dictate the paths of our lives?”

[PaulKnoepfler] A:  “Hi Jay, I do think GATTACA is relevant here. Many scientists get upset with the movie is mentioned in this context because they think it scares people, but at the same time this kind of technology is now here today so what's the point in pretending it isn't? My sense is that the makers of GATTACA were very good at predicting the future in some ways. It remains unclear if human genetic selection and modification will permanently change our species and our world, but today it seems far more possible at least relatively speaking than just 3 years ago. At the same time I agree with one of the commenters below that an important message of the movie is that genetics is not destiny. I make that point in my book too. There's a catchy notion floating around out there --genetic determinism --that argues the opposite. It says genetics is more powerful than anything else. I don't think it's everything, but it is powerful. One of my concerns about human genetic modification that was a focus of my TED talk is that it could become driven by pop culture and even by governments with bad consequences. Eugenics is a real possibility. To those who say, "don't mention GATTACA or Brave New World" in the discussion of human gene editing, I say go watch the movie and read the book again, and then ask yourself if they really don't belong in the discussion.”


Previously on Biopolitical Times:

Image via /r/Science

CRISPR Gene Editing: Proofreaders and Undo Buttons, but Ever "Safe" Enough?

Posted by Elliot Hosman, Biopolitical Times on November 19th, 2015

The 1986 Franklin Spelling Ace, a previous generation of spellcheck. Flickr/Nate Bolt

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News about genetic engineering continues to emerge at a dizzying pace. In recent weeks, a handful of reports suggest that the suite of new “gene editing” tools may have so-called “proofreaders” and “undo” protocols that increase technical safety. At the same time, a growing consensus seems to be emerging that looks beyond immediate technical safety to the long-term and social implications of modifying the genes of human embryos for the purpose of “enhanced” reproduction.

Is CRISPR safer?

A November 13 story in The Scientist, headlined Cas9 Proofreads Gene Edits, canvassed two recent research publications (in Nature and Science) co-authored by CRISPR co-discoverer Jennifer Doudna. The take-home message was that the Cas9 protein – the molecule charged with making cuts to DNA in the CRISPR/Cas9 gene editing complex – may have certain built-in mechanisms that work against off-target cuts. The headline’s metaphorical imagination conformed to the headline used by UC Berkeley in its related November 12 press release: CRISPR-Cas9 gene editing: check three times, cut once.

The same day, VICE Motherboard reported on work done by researchers at UMass Medical School (published in Molecular Therapy) that “used a ’non-cutting’ version of the protein Cas9” to research the genetics of muscular dystrophy. In contrasting the UMass team’s research with the typical function of CRISPR/Cas9 complexes, VICE’s Melissa Cronin wrote descriptively,

Usually, CRISPR is a cutting machine, hacking away at pathogenic genes. But sending a weed-whacker into a delicate genome to cut away hundreds of spots is risky, and could result in mistakes.

On November 16, Nature News described research by a team including George Church and Kevin Esvelt on gene drive – a technology that can amplify specified genes in populations by altering inheritance probabilities –  with the headline: Safety upgrade found for gene-editing technique. A few days earlier, Sharon Begley had reported in STAT on increasing concerns with gene drives with the headline Why FBI and the Pentagon are afraid of gene drives. The “undo button” proposed by Church, et al.’s research, or what Scientific American referred to perhaps appropriately as a “kill switch” [paywall], was, it seems, more of the unforeseeable same. The so-called upgrade was “sending a second gene drive out to undo the effects of the first.”

Is there an emerging consensus against CRISPR-ing future people?

These recent headlines may “calm some fears about the technology.” But even if the promised safeguards function as advertised, they wouldn’t necessarily prevent gene editing tools from effecting unforeseeable and irreversible changes to human genomes or ecological systems – not to mention the fabric of our society. Gang Bao, professor and bioengineering researcher at Rice University who studies the genetics of sickle cell disease, recently noted:

In the germline, off-target effects might persist for generations and could lead to long-term changes in the genome. Until we know the full consequences of gene editing, it would be a huge mistake to use it to modify the germline.

Jennifer Doudna has long been cautious of the potential for CRISPR technology to go awry. Just days prior to her most recent publication, she was quoted by Michael Specter in The New Yorker story The Gene Hackers on its potential to “do more harm than good”:

"I lie in bed almost every night and ask myself that question," she said. "When I’m ninety, will I look back and be glad about what we have accomplished with this technology? Or will I wish I’d never discovered how it works? … I have never said this in public, but it will show you where my psyche is,” she said. “I had a dream recently, and in my dream”—she mentioned the name of a leading scientific researcher—“had come to see me and said, ‘I have somebody very powerful with me who I want you to meet, and I want you to explain to him how this technology functions.’ So I said, Sure, who is it? It was Adolf Hitler. I was really horrified, but I went into a room and there was Hitler. He had a pig face and I could only see him from behind and he was taking notes and he said, ‘I want to understand the uses and implications of this amazing technology.’ I woke up in a cold sweat. And that dream has haunted me from that day. Because suppose somebody like Hitler had access to this—we can only imagine the kind of horrible uses he could put it to."

Many voice concern that eugenics in the modern age could be as pernicious as the twentieth-century variety, even if it is submerged in the shiny casing of individual consumer decisions. Nathaniel Comfort’s historical essay Better Babies (Aeon, November 17) argues,

Scientific medicine rescued eugenics, turning human perfection from a social programme [of who to mate with and who to sterilize] into a biotechnical problem. … CRISPR must be seen as the latest step in this history of promises: the promise of ending genetic disease, of designer babies, of the self-direction of human evolution.

Other recent stories have echoed these concerns: Would you edit your unborn child’s genes so they were successful? (The Guardian UK), The Risks of Assisting Evolution (The New York Times), The Crispr Quandary (The New York Times Magazine), Experts debate: Are we playing with fire when we edit human genes? (STAT). More and more observers and stakeholders appear to be taking a cautious position on this technology. In that STAT story, a number of notables were asked where they stood on the issue of germline editing. Pushing the discussion beyond research gaps in technical safety, NIH director Francis Collins explained:

[P]reimplantation genetic diagnosis already offers a practical and much less ethically challenging option for most couples seeking to avoid the birth of a child with a serious genetic disorder. … Do we want to accept the scenario that only those with financial resources get to ‘improve’ the genomes of their children?

Collins concluded that there was a “profound paucity of compelling cases” where germline editing could overcome a balance that “leans overwhelmingly against human germline engineering.”

Bioethics professor R. Alta Charo is co-chair of the recently announced committee charged with producing a “consensus study” after the upcoming National Academies “international summit on human gene editing.” This makes her comments, published by the University of Wisconsin Madison’s news office, particularly interesting:  

Changes to germ line cells will affect all subsequent generations. Ethically, it offers possible benefits to — but imposes risks on — people who were never involved in the original decision. And whatever happens, good or bad, will reverberate down the generations. ... germ line engineering is, in my opinion, the least likely gene editing application in the near term — potentially forever. Established methods could, a lot more simply, avoid some grievous or fatal genetic defects. You could adopt a child or use donor sperm and eggs. Or you could use in vitro fertilization and pre-implantation genetic diagnosis for embryo selection to avoid bringing a child into the world who will suffer with a serious disease.

All these recent comments suggest that even as researchers rush to proclaim they’re solving CRISPR’s technical limitations, its long-term consequences and social implications can’t be ignored.

Previously on Biopolitical Times:

Image via Flickr/Nate Bolt

Gene Editing and Eugenics (Opinions Vary)

Posted by Pete Shanks on October 29th, 2015

Critics of efforts to "improve" our species via heritable genetic modification are sometimes reluctant to call this "eugenics," for fear that enhancement enthusiasts will derail the conversation by invoking Godwin's law.

The argument against using eugenics as a frame of reference for new human biotechnologies is generally that the 20th-century variety was defined by state action (not entirely true), whereas human betterment enabled by 21st-century science will be a different thing entirely.

So it’s almost refreshing to read, in a respectable, albeit conservative, daily newspaper:

Eugenics need not be a dirty word — instead, it could be lifesaving technology

The article in question, by Madhumita Murgia who writes for Wired as well as the Daily Telegraph, was prompted by the fact that today the UK law comes into force that allows the use of nuclear replacement technology in attempts to avoid the births of children with mitochondrial (mtDNA) disease.

Murgia argues that

Eugenics is a dirty word, most commonly associated with racist profiling, or Nazi experiments. But the time has come to rethink our attitude. It can also be understood as manipulating the genome in order to solve human health crises.

At least she admits that mtDNA interventions do affect the germline, and are in practice eugenic. But there is a lot wrong with the piece. For instance:

  • Murgia ignores the fact the UK law allows clinical use of these biologically extreme techniques, without clinical trials or mandated follow-up.
  • She perpetuates the (at least partly discredited) claim that mitochondria have no influence on traits.
  • She repeats the misleading statement that germline interventions “could potentially save lives” without acknowledging the distinction between embryos (that may become people who never develop a particular condition) and patients (who have one).
  • And she cites, as a reason for hope, golden rice, which Michael Pollan called “a purely rhetorical technology” in 2001 — an assessment that remains accurate today.

The article gets even worse when she turns to the notoriously failed experiments that prompted this year’s very public concerns about the gene editing of embryos. She supports them thus:

A new type of gene editing technique, known as CRISPR-Cas 9, was already used in human embryos by Chinese researchers to modify the gene responsible for beta-thalassaemia, a potentially fatal blood disorder.

This experiment, while decried as unethical and dangerous, was in fact a crucial lesson in revealing the problems with the CRISPR technique, and enhanced the scientific community’s understanding of how gene editing works in practice.

So for the sake of those who need it the most, we must be brave enough push the frontiers of present-day human knowledge into territories unknown.

Robert Pollack warned about eugenics in his letter to Science in May [pdf]. Nathaniel Comfort warned about eugenics at length in The Nation in August. They were not scaremongering, they were helping to bring a debate we need to have out of the shadows and into the limelight. Perhaps inadvertently, so is Madhumita Murgia.

It may be time to return to first principles and explain how eugenics was not merely misapplied, but wrong.

Previously on Biopolitical Times:

Forgotten Stories of the Eugenic Age #4, Part 3: The Blurry Boundaries of Eugenic Infanticide

Posted by Natalie Oveyssi on October 29th, 2015

The Black Stork movie poster, 1917
The Black Stork movie poster, 1917. Image by Martin Pernick

[Forgotten Stories of the Eugenic Age is a blog series exploring the lesser-known ways that eugenics affected and engaged American lives during the first half of the twentieth century.]

[Parts 1 and 2 tell the story of Dr. Harry Haiselden’s refusal of life-saving surgery for a baby with disabilities, whom he believed would be a burden on society, and the ensuing controversy.]

While public debate about the Baby Bollinger case subsided, Harry Haiselden continued to work as a physician. He diversified his eugenic medical practices to include sterilizations, and claimed to have personally sterilized nearly 400 patients in Chicago by late 1915.

In addition to sterilizations, Haiselden was called to consult on cases throughout the country to decide whether “defective” infants should receive operations or be allowed to die. Sometimes Haiselden decreed that a baby’s health issues could be corrected satisfactorily through surgery, especially if the baby appeared to be of “bright” intellect. At other times, as Haiselden told news reporters, if he found a child to be a “hopeless idiot,” he would “unhesitatingly advise that it be permitted to die.”

In July 1917, Haiselden once again approached newspapers, this time to report his recommendation that another three children be permitted to die. He explained that Baby Meter, who had already died at one day old by the time stories went to print, had been missing part of her upper skull case and had what appeared to be a small, malformed brain. “When I saw the baby, I knew it had lived too long already,” he said. He concluded that allowing the child to survive would be a crime against the race; letting the child die would be a “favor.” As in the Baby Bollinger case, Haiselden claimed that fifteen other doctors had agreed with his assessment, although again he provided no names.

Baby Mattys was five months old, paralyzed, and had an “incurably affected” head. Haiselden estimated that surgery could prolong the child’s life by a year or two, but said that the parents had agreed to let the child die now. Neither the Baby Meter nor the Baby Mattys case garnered much attention in the press. The third baby for whom Haiselden had recommended death did not receive any news coverage at all.

However, another case that emerged in November 1917 revived controversy, almost exactly two years after Baby Bollinger’s brief life and death.

Two-and-a-half-year-old Paul Hodzima had a microcephalous head and severe breathing difficulties due to a tracheal obstruction. Haiselden prescribed the child drugs that he said would both ease his pain and cause him to lose his appetite so he would starve to death. He asserted that his actions had an altruistic purpose in addition to “saving” the race from another defective child. The drugs would permit the baby’s exhausted, distressed mother to focus her attentions on her other child, who “is normal in every way.”

Perhaps for the first time, Haiselden himself used the word “euthanasia” to describe his work. He said of his decision in the Hodzima case, “Euthanasia or painless killing by God-given drugs relieves the old pain and takes away the horror of death," which arrives within a week to a month. He extolled the benefits of morphine in treating “lives of no value and bodies in constant pain” that, by existing, “check the vitality of others.”

Chicago coroner Peter Hoffman, who had expressed ambivalence in the Bollinger case two years prior, seemed to find this case more distasteful. He warned Haiselden that he would present him to a grand jury and ask for an indictment if the drugs caused the baby's death. Ever seeking the spotlight, Haiselden replied that he would welcome such an action because it would give him the opportunity to “enlighten the public on many things.” Even so, he thought that his critics should “devote their attention to the scores of automobile murders, the abortions, the daily street murders, and similar unchecked crimes against persons who have every right to live,” unlike Paul Hodzima, who had no such right.

Other doctors spoke out against Haiselden's actions. They argued that Hodzima’s pain could be alleviated without condemning him to death. They protested that a physician did not have the right to directly cause death, even if they agreed that it was morally acceptable to “passively” let death occur as an act of nature or divinity. Though some commentators, like W. D. Brooke of Oakland, expressed “outspoken and unqualified approval” of Haiselden’s actions in the Hodzima case on the grounds that a defective individual is incapable of “attaining the social position of her naturally-formed sisters and brothers,” these views surfaced more rarely. To most critics, allowing a baby—especially one they perceived as never really human, never truly alive—to “fade away” was one thing. Poisoning a toddler was another.

The clear demarcations that Haiselden supporters saw between allowing “nature” to take a baby's life and committing murder were evidently not so obvious to others. Shortly after the Baby Bollinger case, Mrs. James F. Darcey of St. Louis told newspapers that she had written a letter to Dr. Haiselden about her six-year-old son who had been labeled defective and currently lived in a city sanatorium. She wrote, “I worry so over him. I would be glad if he were to die. Now, is there any way that he could die, or do you think that there is any cure for such children?” Mrs. Darcey added, “I wouldn’t want to kill him, of course, but I would rather have him dead than in his present condition.”

Other parents seemed unable to distinguish between the “incurable” and “curable” defectiveness Haiselden traveled the nation diagnosing. On July 28, 1917, shortly after Haiselden’s announcement about the determined fates of the three “defective” babies, a father urged surgeons at the Jewish Maternity Hospital in New York not to operate on his newborn son, who had unspecified health problems. Physicians overrode the father’s wishes, believing that the baby had an excellent chance at a complete recovery. Yet according to the baby’s doctors, the father, a supporter of Dr. Haiselden, apparently “could not grasp that this case was different” than the others.

With clamor over the Hodzima case, a police officer went to the child’s home and confiscated the drug his mother had been administering. Haiselden then had the child removed to the hospital. Nothing more is known about the fate of Baby Hodzima, and it appears that despite Coroner Hoffman's threats, Haiselden was never formally charged with a crime.

After Baby Bollinger’s death, biologist Dr. Harold N. Moyer noted in the New York Times, “The public will be educated by this discussion. Those questions must sooner or later come to the attention of the masses.” But the discussion did not persist very long. While the Hodzima case provided a little kindling to temporarily reignite the opposition, after the initial uproar of the Baby Bollinger case waned, Dr. Haiselden’s actions no longer seemed shocking. Just two months after newspapers ceased publishing about the Hodzima case, the New York Times succinctly reported, “Another ‘Haiselden baby,’ so-called, has been permitted to die.” Baby Emma Stanke was two months old and quadriplegic. Inventing yet another questionable boundary, Haiselden remarked that doctors gave the baby “ordinary, human care,” but not “the full benefit of scientific care.” Little else was said of Baby Emma Stanke. There was no public outcry this time.

When Dr. Haiselden died in 1919 of a cerebral hemorrhage while vacationing in Havana, news articles offered little mention of his eugenic preferences or the lives he had allowed “nature” to snuff out. Haiselden once said, “They will criticize me, but I shall have friends too. And some day they will wonder how there could be any criticism.” It seems that in fact a third path was taken: The press apparently forgot that anyone had ever criticized Harry Haiselden.

After Haiselden’s passing, his friend and brother-in-law Dr. Clarendon Rutherford commented, “Every great man is misunderstood, but Dr. Haiselden was maligned. . . . He refused to prostitute his art by prolonging the lives of babies who were born idiots and morons. He was twenty-five years ahead of his time.” Rutherford’s prediction was disturbingly accurate: Child euthanasia became an official program in Nazi Germany in 1939.

The eugenic judgments of Harry Haiselden, other medical and legal professionals, and members of the public relied on moral codes predicated on the imposition of boundaries. Commentators drew boundaries to separate human beings based on determinations of fitness and unfitness, normality and abnormality, and humanity and sub-humanity. Important to these placements were additional boundaries: health and sickness, intelligence and idiocy, and burden and benefit.

With these boundaries set, observers then made additional demarcations to distinguish who had a right to live and who didn't; who was curable and who wasn't; and which conditions or states of being were tolerable, which weren't, and to which gradations.

Then, these boundaries pervaded the medical realm to differentiate “ordinary, human care” from “the full benefit of scientific care” and to determine which actions were acceptable for physicians: intervening to save a life, allowing “nature” to end one, or prescribing drugs to hasten that end. These boundaries also determined what the public should know or discuss. And they facilitated the final determinations—those between inaction, involuntary euthanasia, and murder, and between innocence and guilt.

All the boundaries were blurry. There were many exceptions and no consensus. But their establishment unquestionably engendered the systematic devaluation and dehumanization of people with disabilities. Quite simply, Dr. Harry Haiselden decided not to try to save the lives of several babies with disabilities because he did not believe that those babies should live, and many people supported him. Did the supposed degree of passivity or activity in effecting the outcome of death matter? To borrow the eloquent phrasing of the Los Angeles Times in 1915, Baby John Bollinger “died of inertia,” and inertia is a choice.

Classical eugenics fell into disfavor after the atrocities of the Holocaust. It became less socially acceptable to (openly) refer to persons with disabilities as drains on the vitality of humanity, or to deny them life-saving medical care. But until then, Haiselden’s career contributed to the development of an ethos in which it was normal and unobjectionable for the Chicago Daily Tribune on April 15, 1916, to write of Dr. Haiselden’s latest patient, “Eliza Johnson, the five year old girl who ‘would be better off dead’ because her mental growth stopped when she was but a few months old, is ‘better off.’”


1. “17 Doctors Favor Letting Baby Die.” Washington Post, Nov. 16, 1917.
2. Bonsfield, Dr. M. O. “Haiselden Speaks at Appomattox Club.” Chicago Defender, Dec. 4, 1915.
3. Brooke, W. D. “Unqualified Approval of Dr. Haiselden’s Conduct.” San Francisco Chronicle, Nov. 23, 1917.
4. “Condemns Death Drugging Plan.” Washington Post, Nov. 13, 1917.
5. “Defective Baby Dorothy Cleveland Should Live, Rules Dr. Haiselden.” Washington Post, Mar. 5, 1916.
6. “Doctors Agree Deformed Babe Is Better Dead.” San Francisco Chronicle, Nov. 16, 1917.
7. “Dr. Haiselden Dead in Cuba.” New York Times, Jun. 20, 1919
8. “Dr. Haiselden of ‘Baby Fame’ Dies in Cuba.” Chicago Daily Tribune, Jun. 19, 1919.
9. “Dr. Haiselden to Let Deformed Baby Die.” Chicago Daily Tribune, Jan. 22, 1918.
10. “Evanston Girl Dies Under Knife of Dr. Haiselden.” Chicago Daily Tribune, Apr. 15, 1916.
11. “Haiselden Died Suddenly, Trip Pleasure Jaunt.” Chicago Daily Tribune, Jun. 20, 1919.
12. “Haiselden to Sterilize Youth.” Chicago Daily Tribune, Dec. 19, 1915.
13. “Lets Afflicted Baby Die: Dr. Haiselden of Chicago Again Refuses to Save a Life-Cripple.” New York Times, Jan. 28, 1918.
14. “Meter Baby Dies; Nature Is Kind, Says Haiselden.” Chicago Daily Tribune, Jul. 25, 1917.
15. “Mother Asks Knife to Check Insanity Threat.” Chicago Examiner, Nov. 19, 1915.
16. “Mother of Defective Boy Wishes Him Dead in Letter to Physician.” Washington Post, Dec. 5, 1915.
17. “Mrs. Bollinger Is Dead: Grieved for Deformed Baby Whose Life Was Forfeited.” New York Times, Jul. 29, 1917.
18. “Operation for Boy Would Block Taint.” Chicago Examiner, Nov. 18, 1915.
19. “Opinion Divided on Killing Babies Deformed or Imbecile, as Chicago Doctor Says He Is Doing in Mercy.” Washington Post, Nov. 18, 1917.
20. “Physician Assists Patients to Die.” Los Angeles Times, Nov. 12, 1917.
21. “Physician Lets Second Defective Child Die, Rather Than Operate.” Washington Post, Jul. 25, 1917.
22. “Physician Who Sentenced Babe Defies Coroner.” San Francisco Chronicle, Nov. 14, 1917.
23. “Question Doctor’s Power Over Life and Death.” Los Angeles Times, Nov. 20, 1915.
24. “Save Abnormal Baby.” Washington Post, Jul. 29, 1917.
25. “Surgeon Lets Baby, Born to Idiocy, Die.” New York Times, Jul. 25, 1917.
26. “Threatens Arrest if the Baby Dies.” Washington Post, Nov. 14, 1917.
27. United States Holocaust Memorial Museum. “Euthanasia Program.” Holocaust Encyclopedia. Last updated Aug. 18, 2015. http://www.ushmm.org/wlc/en/article.php?ModuleId=10005200.
28. “Will Rule on Life or Death for Baby.” Washington Post, Dec. 26, 1917.

Previously on Biopolitical Times:

Image by Martin S. Pernick, The Black Stork: Eugenics and the Death of "Defective" Babies in American Medicine and Motion Pictures since 1915 

The CRISPR Germline Debate: Closed to the Public?

Posted by Elliot Hosman on October 15th, 2015

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The conversation about how to regulate powerful new genome editing tools is heating up as the National Academies’ December “international summit” draws closer.

A Nature editorial on October 14 argues (echoing the conclusions others have drawn [1, 2] as the CRISPR hype has mounted) that valorizing the 1975 Asilomar meeting as a model for modern scientific policy debate is ill-advised:

“When controversy comes calling, rather than asking for an Asilomar conference — which, after all, was closed to the public — scientists should reach outwards.... The world has moved on since then; science must as well.”
Nature continues, “[S]cientists who wish to self-regulate ignore public outcry at their peril” and “the most polarized US government in history… can turn any new technology into a political weapon.” While the editors recognize that ‘[d]iscussions should extend beyond researchers and ethicists,” their qualified recommendation – that this means “includ[ing] or at least broadcast[ing] to, the broader public”– is a bit worrisome. (emphasis added)

Unfortunately, Nature then goes on to malign one of the common entry points for public engagement with biotechnological controversies: “[D]iscussions should avoid unhelpful references to the genetically modified humans in the 1997 film Gattaca.” By cordoning off cultural references, this move in effect erects boundaries to public participation and restricts the debate to scientific authorities and terms.

These views are especially troubling because media coverage of the CRISPR controversy in the past few weeks has focused on anything-but-ELSI news, as evidenced by other recent stories.

Nobel Prizes and Consolation Deals

After a flurry of media speculation, Jennifer Doudna and Emmanuelle Charpentier were passed over this year for a Nobel Prize. But on October 8, the day after the Nobel announcement, Doudna’s nascent CRISPR company Caribou Biosciences inked a deal with DuPont giving the Big Ag biotech company exclusive rights to Berkeley’s pending CRISPR patents on plants—if those patents are granted. With DuPont’s $11 billion annual business in GM seeds and crop chemicals, the deal is a serious consolation prize after the missed laurels.


A thought experiment on CRISPR’s profit potential has emerged, in the form of teeny weeny CRISPR pigs, available soon as designer pets. They were created by the Chinese company BGI to serve in human drug trials, their efficient size being optimal for reducing the dosage required for expensive new drugs. BGI is seeking to develop its capacity to serve customers specifically customized piglets in the future.

Commenting on different research with pigs, Jennifer Doudna expressed her surprise in Science that cells even survived an experiment led by George Church in which his team hacked up pig genomes in 62 locations to cut out copies of the “PERV” (porcine endogenous retrovirus) gene that might impede pig-to-human organ transplantation by taking advantage of “an apparently rare phenomenon called gene conversion”—a DNA-cutting “snowball effect.” Church’s response was cautious; he pointed out the difference between what his team has done and targeting numerous unique genes in the same cell, and noted that he is not confident the method is “generalizable”:

It doesn’t mean that we can now change 62 different genes easily.
The media greeted Church’s work by celebrating the impending arrival of pig hearts for humans, a nod towards the xenotransplantation for which futurist Martine Rothblatt has been pushing. But Ed Yong at The Atlantic argued that this may be more useful for CRISPR hype than pre-clinical research:
When I reported on such transplants for a feature in 2012, some immunologists mentioned to me that PERVs were a somewhat hypothetical concern. ... My sense is that the PERV-less pigs are remarkable less as a source of organs and more as testament to the power of CRISPR.
Undo Buttons

VICE Media’s Motherboard helped to extend the metaphor of genome editing, covering developments in CRISPR gene drives to produce a so-called “undo button.” The article highlighted bioethicist Art Caplan’s advice that:
Regulations should require the development of methods to halt the effects of edited insects or animals should they prove harmful to other organisms, the environment, or humans.
But while cmd+Z patents may be on the horizon, most observers agree that the off-target effects of CRISPR remain a significant obstacle. Unfortunately, some researchers and media commentators seem to be relying on an as-yet unseen deus ex machina to resolve all of the potential consequences of a technology whose effects are far from completely understood.

Ethical, Legal, Social Implications?

And so the sine wave of CRISPR hype, speculative applications, and Twitter-shattering developments has continued these past weeks. The policy debate about how to regulate genome editing also continues, though it often seems to be monopolized by the same few voices.

The Associated Press made a pass at discussing ethics on October 9 under the headline Gene editing: Research spurs debate over promise vs. ethics. The story quoted scientists heavily invested in CRISPR research, in varying degrees of cautious stances. "We need to try to get the balance right," Jennifer Doudna told AP, while George Daley remarked “this isn't a conversation on a cloud,” emphasizing the drive to “move this forward” from families who seek treatment for rare genetic diseases. But in the National Academies’ October 5 “public information session,” Daley emphasized the need to draw the line between “permissible and nonpermissible applications” for CRISPR, clarifying that he was not implying that George Church’s list of protective alleles for germline enhancement would qualify as “permissible.”

Canvassing the social concerns at issue, UNESCO updated its report on the human genome, recommending a moratorium on editing the human germline and that somatic CRISPR interventions be used “only for preventive, diagnostic or therapeutic reasons.” Kings College bioethicists Silvia Camporesi and Lara Marks responded quickly and bizarrely, calling the UNESCO suggestion “undemocratic” and a rehash of “old arguments.” In fact, UNESCO’s concerns — justice, access, the human genome as commons, and the potential for a renewed form of eugenics — deserve the global public’s full attention as we weigh the benefits and risks, known and unforeseeable, of germline intervention into human DNA amid the commercial and political dynamics of rapidly advancing biotechnology.

We have yet to see any real plans for a publically inclusive democratic debate (not like that one) that fully engages the host of social and ethical issues that genome editing manifests.

Previously on Biopolitical Times:

Image via Pixabay

Forgotten Stories of the Eugenic Age #4, Part 2: The Black Stork Rises: Dr. Haiselden’s Celebrity and Public Controversy

Posted by Natalie Oveyssi on October 14th, 2015

Dr. Harry Haiselden in The Black Stork, 1917
Dr. Harry Haiselden in The Black Stork, 1917

Untitled Document

[Forgotten Stories of the Eugenic Age is a blog series exploring the lesser-known ways that eugenics affected and engaged American lives during the first half of the twentieth century.]

[This is a continuation of Part 1.]

One of Dr. Harry Haiselden's refrains when defending his behavior in the Baby Bollinger case was that doctors everywhere routinely decided to let hopeless defectives die; he only wanted to illuminate the practice for the public. Yet, the doctor seemed to desire the spotlight not only for eugenic medicine but also for himself.

After the Baby Bollinger case entered the news, Haiselden was invited to speak at social clubs, improvement societies, and professional organizations. On November 29, 1915, not two weeks after the baby's death, he gave a speech about the case and "defective" children generally in between the second and third acts of a controversial race improvement play called “The Unborn.” In early December, he addressed the Chicago Physicians, Dentists, and Pharmacists Association, where he reaffirmed his actions in the Bollinger case and expressed his commitment to sterilization of the unfit, including all those who had been confined to an institution for the "feebleminded" for more than one year.

In an acknowledgement of Dr. Haiselden’s rising celebrity and a demonstration of the cultural reach of the Baby Bollinger case, the January 10, 1916, edition of the Los Angeles Times “Pen Points” column, consisting of a series of pithy observations by the staff, included the following: “Dr. Haiselden has been summoned to New York to study a ‘defective’ case and to be the guest of honor at the opening of a play. It looks as if in allowing the Bollinger baby case to become public the doctor was foolish like a fox”—meaning, not very foolish at all.

Haiselden's growing visibility intensified public discourse over the Baby Bollinger case. Biologists, doctors, eugenists, clergymen, lawyers, and lay persons wrote letters to the editor in droves, and newspapers began to solicit and publish compilations of these letters in long features under titles like “Was the Doctor Right?” and “Does Humanity Demand the Saving of Defective Babies?”

Letters in Support

Those who wrote in support of the doctor raised several common arguments. One major contention was that in deciding not to operate, Haiselden was merely acting as an objective agent of science. It was authoritative, factual science that decreed the baby should not live, and one cannot question the dictates of science. Others maintained that the autonomy of a doctor in caring for a patient is inviolable. No other person has the right to interfere in a doctor’s work.

Many more commentators took a direct eugenic approach: Haiselden did the right thing in limiting the number of parasitic “degenerates” who would pollute the national stock and drain public resources. All such babies should be put to death upon birth. After all (in a disturbingly distorted echo of Dr. John Dill Robertson's testimony before the coroner's jury), weak babies in ancient Sparta were unsentimentally exposed to the elements to die.

Some earnestly argued that if we can approve of sterilization of feebleminded individuals, then surely we can approve of the elimination of unfit babies. The well-known eugenist Irving Fisher wrote that the idea is only shocking because it is new. In time, he said, we will grow accustomed to such extreme preventive action. In a letter to the editor, Charles Davenport, the famous head of the Eugenics Record Office, described death as “one of Nature’s greatest racial blessings.”* A few supporters recalled neighbors or acquaintances with disabilities that they believed were prime candidates to receive this “blessing.”

With similar conclusions but a softer approach, some letter writers argued it would be a mercy to let babies with disabilities die rather than to allow them to experience a lifetime of “pain, shame, humiliation, and distress.” If we can be kind enough to put down injured or abnormal animals, they said, then certainly we can muster the same kindness for defective human babies.

Still others doubted that Baby Bollinger could have claimed the labels of "human" or "alive." As biologist Raymond Pearl wrote, "[T]his infant could never develop into anything even approaching a normal human being.” The editor of the London Lancet, one of the world's most prestigious medical journals, said, "I do not consider that the child ever really lived.”

A number of individuals tried to pinpoint the general conditions under which Haiselden’s measures would be acceptable. They distinguished between physically and mentally “defective” children. The former might still contribute something to society and should be permitted to live, but the latter are a useless drain, they said. An additional demarcation was that Dr. Haiselden hadn’t actually killed the baby; he had merely permitted nature to take its inevitable course. Since not operating was not a deliberate action but the absence of an action, he could not be blamed for "nature fulfill[ing] its own destiny." Death or life would be nature's decision. (They did not acknowledge that there is never more than one possible outcome for a baby left without basic care over the course of several days.)

Another common approach for supporters was to dodge the issue of the rightness of Haiselden’s actions. They expressed a lack of comfort with the idea that a single man, even if a doctor, could make the decision to withhold life from another individual, even though they agreed with the results. Some expressed disapproval of Dr. Haiselden for “making such a public ado about the matter.” Several opined that the treatment of the baby and babies like him was hardly worth discussing. Instead, the public should turn its attention to things that matter, like war or abortion.

An additional category of responses in affirmation were purportedly—though judging by their contents, rather doubtfully—sent from children with disabilities who with wide-eyed innocence lamented their unfortunate lives. Haiselden reported that he had received a letter from a young girl that read:

Just a line from a little crippled girl, thanking you for not letting that baby live. . . We can’t play like other children. We are in every one’s road but mother’s and her poor heart aches with ours. We are just a curiosity for people to gaze at. Tell Mrs. Bollinger she is a grand, good mother, and her baby is an angel in a beautiful place—heaven. Why do people want to keep me and that little baby out of heaven? I remain your little invalid, ready to go to heaven at any time.

The most sympathetic writers were mothers and fathers who loved their children with severe disabilities, but who struggled to take care of them and didn’t know where to turn for assistance. They felt that it might have been better for their children to have died at birth than to condemn them to abuse in asylums, or to spend their own lives in fear of what would happen to their children when they died. (Interestingly, Dr. Haiselden himself frequently spoke out against the terrible conditions in asylums and institutions for the care of persons with disabilities.)

But the most striking letters by far were written by other doctors who had the power to practice Haiselden's ideals. Dr. William Rausch, Jr. of Albany, New York wrote that in the cases of babies with severe inherited disability, he believed it was “humane to cut off their future suffering by one means or another, preferably ‘forgetting’ to tie the cord” so they would hemorrhage. Dr. David Monash of Northwestern University Medical School admitted to having done just that in a few cases. Dr. Charles Sumner Bacon of the University of Illinois took issue with Rausch’s recommendation, countering that he found that particular method of infanticide to be “unreliable.” He wrote, “The usual methods of killing a new-born are by smothering, strangulating, or dividing.”

Letters in Opposition

Letters in opposition to Haiselden’s actions also followed common themes, though newspapers published them less frequently. Although we do not know the exact proportion of viewpoints expressed in the letters submitted to the media, the Independent estimated that they had received four times as many letters supporting Haiselden than condemning him.

Many opponents argued that only God could give or take away life, so Haiselden was assuming a power to which he had no right. (Haiselden’s supporters tended to respond that God wouldn't mind too much.) Others referenced a different higher power—the courts—as the only earthly decider over life and death. They cited the fifth amendment of the Constitution: No one can be deprived of life, liberty, and property without due process of law. Certainly, a single doctor neither elected nor appointed had the authority to order life or death. Said noted social worker Jane Addams, “Under no circumstances has any human being the right to pass judgment of death for unfitness on any other human being. Only one thing will justify such presumption: the course of the law in punishing a murderer.”

Others focused on the duty of a doctor to treat the sick and prolong life, not end it. By not doing everything in his power to save the baby, Haiselden was violating the dictates of his profession. One letter said that doctors who are “eugenist-enthusiasts” should be forced to declare their beliefs and let patients decide whether to patron their services. Few would want to leave their health in the hands of a doctor who might believe they would be better off dead.

Some heralded great “defectives” of the past who had contributed much to society, naming Helen Keller, John Milton, Lord Byron, Robert Louis Stevenson, Fyodor Dostoevsky, Napoleon, Emperor Wilhelm, and ancient Greek orator Demosthenes as examples. These individuals overcame their challenges and developed “greater capacities in other respects.” Wrote P. Smith, “Who knows but what this babe—deformed and malformed as it is said to have been—might have possessed some gift that would have added a little mite to the world’s spiritual or intellectual heritage?” (For her part, Helen Keller submitted a letter to the New Republic in support of Haiselden, writing, “The toleration of such anomalies [as Baby Bollinger] tends to lessen the sacredness in which normal life is held.”)

A few letter-writers stated that they taught, treated, or worked with people with disabilities and found them equally deserving of life, rights, and benefits as individuals who did not have disabilities. Others said that regardless of the severity of an initial diagnosis, with treatment, patients might do better than was initially anticipated. In addition, new treatments and therapies were constantly being discovered that might help once-hopeless cases.

Many were concerned that the doctor’s actions would set a bad precedent for future cases. Though the Bollinger case may have appeared straightforward to some, where would we draw the line between fit and unfit, normal and subnormal? The possibility for abuse was enormous.

Doctors critical of Haiselden wrote that they had been trained to treat patients, relieve suffering, and extend life. They were not equipped to judge the worthiness of an infant’s continued existence, and had no desire to become executioners. Wrote Dr. James J. Walsh:

The physician has assumed the exercise of a power that is not his. Doctors have the care of life, not death. Physicians are educated to care for the health of their patients, but so far at least as I know we have no courses in our medical colleges as yet which teach how to judge when a patient’s life may be of no service to the community so as to let him or her die properly. Some of us physicians may thank God that we are not yet the licensed executioners of the unfit for the community, and some of us know how fallacious our judgments are even with regard to the few things we know.

The Black Stork

While public discussion eventually waned, Haiselden remained determined to share his beliefs with a broader audience. He co-wrote and starred as himself in a 1917 propaganda movie derived from the Bollinger case called The Black Stork. The Sheriott Pictures Corporation, which produced the film, frantically objected to the “propaganda” label, preferring the interpretation that the film was a "living document" intended to teach "moral cleanliness." Despite its stated aims, the moral authorities challenged the film because its subject matter was seen as risqué and threatened to revoke the license of any theater that showed it.

In the film, a mother gives birth to a baby that the doctor (played by Haiselden) labels as physically, mentally, and morally defective. The doctor suggests to the mother that she allow her baby to die, but the mother is unsure. She falls asleep and dreams about what would happen if the baby lived. The baby grows up to be a violent criminal who returns to the hospital and murders the doctor for allowing him to live a miserable life. The mother awakens and tells the doctor that she agrees to allow the child to pass away. The doctor looks on as the child’s soul leaves its body and enters the arms of an awaiting Jesus Christ.

The film was not well received. Variety reported, “Not in many moons has a feature film received such a panning in the Chicago dailies as was given ‘The Black Stork.’”

Chicago Daily Tribune movie critic Mae Tinée wrote of the “nauseating display”:

The production has not even the saving grace of being a good picture. It is amateurishly acted. . . and the photography is bad. It has no elements to attract either the thinking or the sensation seekers and is as pleasant to look at as a running store. Itself a hopeless defective, it should have been mercifully throttled at birth.

The Billboard said of the film in its review:

The Black Stork is a sickening excuse to drag before the camera all of the deteriorated humanity which the defective hospitals could pour into five reels. It is a gagging nauseating exposition of the results of uncurbed licentiousness, in a story told with a smear of science as a prop. It is not a sex-lure film; it is a mere cataloguing of the pitiable mess of human dregs which is left, crawling, crippled and criminal, after the fire has burned out.

While the film was widely mocked, Haiselden's ideas continued to have serious consequences. Only a couple of months after the film opened in theaters, the doctor contacted the media once more to announce that he planned to let another three “defective” babies die.

[To be concluded with Part 3.]

*It is worth noting that “race” in this context does not refer to the racial categories as we consider them today, but to the “human race” or even the “American race.”

 A video clip of The Black Stork:

1. “The Black Stork.” Billboard, 29.7: 61. Feb. 17, 1917.
2. “Black Stork Feature.” Billboard, 29.16: 56, Apr. 21, 1917.
3. “Black Stork Panned.” Variety, 46.6: 28, Apr. 6, 1917.
4. “Crippled Girl Writes, Upholding Dr. Haiselden in Bollinger Case.” Washington Post, Nov. 23, 1915.
5. “Defeats Cardinal Farley: Injunction Permits Production of an Objectionable Play.” New York Times, Nov. 30, 1915.
6. “Defective Babe Dies as Decreed.” New York Times, Nov. 18, 1915.
7. “Does Humanity Demand the Saving of Defective Babies?” Chicago Daily Tribune, Nov. 17, 1915.
8. “Dr. Haiselden Praised by Bent and Crippled.” Chicago Daily Tribune, Nov. 22, 1915.
9. Keller, Helen. “Physicians’ Juries for Defective Babies,” New Republic, Dec. 18, 1915. Accessed via the Disability History Museum. http://www.disabilitymuseum.org/dhm/lib/detail.html?id=3209.
10. “Judge Scully Assails Dr. Harry J. Haiselden.” Chicago Daily Tribune, Jul. 28, 1916.
11. “Many Defectives Included Among World’s Greatest Men and Women.” Washington Post, Nov. 18, 1915.
12. “Most Doctors Let a Defective Live.” New York Times, Nov. 21, 1915.
13. “Moving Pictures: Comm. Bell Bans Three.” Variety, 48.6: 16, Apr. 20, 1917.
14. “Pen Points.” Los Angeles Times, Jan. 10, 1916.
15. “Right and Wrong in the Case of the Baby Who Was Allowed to Die.” Current Opinion, Vol. L, No. 1, Jan. 1916.
16. “Surgeon Lets Little Child Die When Knife Could Have Saved It.” Washington Post, Nov. 18, 1915.
17. Tinée, Mae. “It Is Cheap, Sickening, Unnecessary: ‘The Black Stork.’” Chicago Daily Tribune, Apr. 2, 1917.
18. “Was the Doctor Right?: Some Independent Opinions.” Independent . . . Devoted to the Consideration of Politics, Social and Economic Tendencies, 85.350: 23, Jan. 3, 1916.

Previously on Biopolitical Times:

Forgotten Stories of the Eugenic Age #4, Part 1: The Short Life and Eugenic Death of Baby John Bollinger

Posted by Natalie Oveyssi on September 24th, 2015

Book on eugenics, 1916 edition
Book on eugenics, 1916 edition

Untitled Document

[Forgotten Stories of the Eugenic Age is a blog series exploring the lesser-known ways that eugenics affected and engaged American lives during the first half of the twentieth century.]

In November 1915, Chicago physician Harry Haiselden decided to let newborn John Bollinger die.

Baby Bollinger, as he was called in the many press reports of the time, was born paralyzed on the left side of his body, missing his left ear altogether and the ear drum of his right ear. His right cheek was connected to his shoulder, and he had a curved spine and closure of the intestinal tract. His only chance of survival was immediate surgery.

Obstetrician Climena Serviss called in the hospital’s chief surgeon, Dr. Haiselden, to consult. A firm believer in the doctrine of eugenics, he examined Baby Bollinger and arrived at the conclusion that even if surgery was successful, the child would grow up to be a mental and moral “defective” who would burden his family and society and taint the human race. Indeed, Haiselden believed that it would be morally wrong to allow the baby to live. As he later recounted, he wondered, “Would his mind be clear? Would his soul be normally alive? That I do not know, but the chances are against it.” Haiselden informed the baby’s parents that, in his estimation, the child would be better off dead. In due course, Mr. and Mrs. Bollinger came to agree.

Having made this decision, Haiselden contacted a reporter to share the story, believing that shedding light on such practices would make the case for the betterment of society through eugenics. Journalists from other newspapers latched onto the story, reporting it as one of the first cannon shots of the eugenic movement.

Haiselden was not the first prominent figure to voice the belief that certain children’s lives should not be preserved. In 1912, D. H. H. Goddard—respected eugenist, author of The Kallikak Family: A Study in the Heredity of Feeble-Mindedness, and coiner of the term “moron”—argued, ironically at a Philadelphia “baby saving show,” for the extermination of children with intellectual and physical disabilities who are “calculated to grow up to increase the race of thieves and paupers.” But Haiselden's decision in the case of Baby Bollinger pushed this concept from the hypothetical realm into reality.

As newspapers printed the story, a firestorm erupted. While the baby lay in the hospital dying of starvation, calls poured in, with some people begging Haiselden to reconsider, and others urging him to remain steadfast in the course he had chosen. Threats to kidnap the child and take him elsewhere for care led the hospital to station a guard at his bedside.

When the baby finally died on November 18 at five days old, the controversy intensified. Members of the public thirsted to hear Haiselden's reasons for refusing to operate so they could decide whether to praise his ideals or excoriate his callousness. Some took to the papers to demand that the state open an inquest to formally settle the matters of whether Baby Bollinger would have lived with operation, whether the baby was truly mental or morally “damaged,” and whether a doctor had the right to determine “defectiveness” in an infant, and, once done, decide if that baby should live or die. They wanted, too, to pass their own judgments on Baby Bollinger’s fitness to live.

Coroner Peter Hoffman had initially believed that an inquest was unlikely, since “the case is not different from many others” and “the physician knows the cause of death,” but the extensive public attention prompted police to open an official investigation. Hoffman's office was asked to perform an autopsy, and a coroner's jury was to determine whether Haiselden would be charged with any crime.

Six prominent Chicago-area physicians were selected for the jury and held a hearing in which they called witnesses and peppered Haiselden with questions about the baby's health and his reasons for inaction. Haiselden explained his choices in a signed statement issued before the Coroner’s jury took up its inquiry:

I say again that it is our duty to defend ourselves and the future generations against the mentally defective we allow to grow and suffer among us, and add to our burden and our problem. . . . So let us be sensible. Let us approve of the sterilization of the insane and the defective, and of the children of habitual drunkards, when both father and mother are so. Let us reproduce ourselves in 100 per cent fashion, so that by weeding out of our undesirables we decrease their burden and ours and lay the foundation for a normal race, which would result four generations from now. Let us venerate a standard with soul and sense, instead of desecrating it with crumbling tradition and mindless sentimentality.
At the hearing, Haiselden testified that he had consulted with fifteen other physicians over the fate of Baby Bollinger, fourteen of whom had agreed with his decision. However, when pressed to give names, he could only provide two: Dr. Climena Serviss, who had initially called him for consultation, and Chicago Health Commissioner Dr. John Dill Robertson, who had publicly denounced Haiselden's actions and who testified against him at the hearing.

Haiselden further stated that he had told these fifteen physicians that if any wished to operate, he would not prevent them from doing so. They all declined his offer, he said, until one asked for permission about two hours before the baby died. Haiselden denied the request on the grounds that it was “against [his] ethics to operate on a dying person.”

Haiselden’s testimony included a series of contradictory statements. “I did not believe the life prospects of the child were good.” “He might have lived for a number of years." "A dangerous surgical operation would have gained nothing for the child.” “Without [an operation], the baby could not live.” “I did not wish to operate lest, if it should die on the table, I should be accused of killing the baby.”

He argued that the parents had been fully informed about their baby's health problems and had not been pressured to accept his decision. He recounted telling the father that, in his professional estimation, the baby would be disturbingly deformed, mentally and morally defective, a burden to himself and society, and doomed to a life of pain and suffering. The mother had never seen the child, and the parents had not been informed that Dr. Robertson supported an operation.  Mr. and Mrs. Bollinger had agreed to allow the doctor to treat their baby as he thought best.

He protested in his defense that it was common practice among Chicago doctors—and indeed doctors everywhere—to allow “hopelessly defective” babies to die. In fact, he said, at least one baby a day in Chicago is secretly left to die, a statement that no one at the hearing contradicted. He concluded, “If I am to be jailed, I am ready to take my medicine. My conscience is clear.”

John Dill Robertson was Haiselden's strongest critic at the hearing. He testified that he had examined the baby, and had expected his problems to be worse than they were. Robertson thought that if the infant had received a timely operation, he would have had a chance of survival. He expressed concern about the dangerous precedent of not working to the fullest extent to save a life, and of relegating to a single doctor judgment over worthiness to live. “If our civilization has reached a stage where the life or death of infants is to be determined on the grounds of fitness,” he said, “then, like the ancient Spartans, we should establish a legal tribunal to pass upon the babies that are to live and those that are to be exposed to death.”

After the autopsy and hearing, the jury declared in a statement, “We find no evidence from the physical defects in the child that it would have become mentally or morally defective. Several of the physical defects might have been improved by plastic operations.” The jury also expressed the belief that a “prompt operation would have prolonged and perhaps saved the life of the child.”

The jury agreed that “morally and ethically, a surgeon is fully within his rights in refusing to perform any operation which his conscience will not sanction.” However, it hinted that it was uncomfortable with the idea of any one doctor making a decision to withhold a potentially lifesaving operation. It recommended that at least two doctors be consulted in such matters. In its strongest criticism of Haiselden, the jury concluded, “We believe that the physician’s highest duty is to relieve suffering and to save or prolong life.”

This was indeed the strongest formal censure Haiselden would receive; the coroner’s jury decided not to charge him.

Even after the verdict, the state of Illinois considered indicting Haiselden for criminal carelessness due to a faulty diagnosis in the Baby Bollinger case. In December, the Illinois Board of Health pursued an inquiry and examined the testimony from the inquest, but chose not to pursue further action. Haiselden had been the consulting and not the attending physician in the Bollinger case, they reasoned, and so could not be held responsible for the baby’s death.

Professional organizations issued a range of responses to the Baby Bollinger case. Before the child's death, the Medico-Legal Society of New York passed a resolution commending Haiselden for allowing the baby to die, thus “not only saving the child misery, but saving society the responsibility of caring for it.”

On the other hand, after long deliberation, the Chicago Medical Society expelled Haiselden on March 14, 1916. Even so, the society sidestepped addressing the morality of Haiselden's actions, and explained that their decision was based not on the doctor’s actions in the Bollinger case, but for “seeking newspaper notoriety and gaining financially” from it. As Independent magazine later observed, Haiselden’s offense, then, “at the worst is not a question of ethics at all, but merely a violation of trade union rules.”

Other organizations deliberately ignored the case. The New York Academy of Medicine held its regular meeting on the evening of December 2, two weeks after the baby’s death. Earlier that same day, another baby had died due to similar inaction from her doctors, whom some maintained had been emboldened by Haiselden’s precedent. However, the president of the organization said that it would be against the association’s rules to discuss the two cases at the meeting.

In spite of his expulsion from the Chicago Medical Society, Haiselden continued to practice at the German-American Hospital where Baby Bollinger had been born and died, and the case continued to bring him his notoriety and financial benefits in the following months and years. In fact, debate raged long after the legal and professional consequences were put to rest. And the public was soon to receive more fodder, as Haiselden’s eugenic legacy was not yet complete.

[Continued with Part 2.]

1. “Baby a Day Allowed to Die.” Washington Post, Nov. 21, 1915.
2. “Bollinger Baby Inquiry: Illinois Authorities May Prosecute Doctor Who Refused to Operate.” New York Times, Dec. 10, 1915.
3. “Chicago Medical Society Drops Dr. H. J. Haiselden.” Chicago Daily Tribune, Mar. 15, 1916.
4. “Clear Baby’s Doctor: Six Physicians on Coroner’s Jury Make Report.” Washington Post, Nov. 20, 1915.
5. “Clears Dr. Haiselden: Health Board Drops Charges in Baby Bollinger Case.” New York Times, Feb. 7, 1916.
6. “Death for Weak Babies Is Opposed by Medical Men of the Capital.” Washington Post, Jun. 3, 1912.
7. “Defective Babe Dies as Decreed.” New York Times, Nov. 18, 1915.
8. “Dispute Doctor Who Let Baby Die.” New York Times, Nov. 20, 1915.
9. “Dr. Haiselden Called Before Medical Body.” Chicago Daily Tribune, Dec. 14, 1915
10. “Dr. Haiselden Expelled: Bollinger Baby’s Doctor Dropped by Chicago Medical Society.” Washington Post, Mar. 15, 1916
11. “Dr. Haiselden Is Expelled.” New York Times, Mar. 15, 1916.
12. “Dr. Haiselden to Face State Board Inquiry.” Chicago Daily Tribune, Nov. 24, 1915.
13. “Hurrah for Dr. Holt: Dr. Haiselden Endorses Action of New York Specialist.” New York Times, Nov. 25, 1915.
14. “Jury Clears, Yet Condemns, Dr. Haiselden” Chicago Daily Tribune, Nov. 20, 1915.
15. “Jury of Surgeons Studies Babe’s Case.” New York Times, Nov. 19, 1915.
16. “Justify Doctor’s Act: Chicago Officials Hold Autopsy Over Bollinger Baby.” Washington Post, Nov. 19, 1915.
17. “May Prosecute Doctor: Movement in Chicago to Accuse Haiselden Because of Baby’s Death.” Washington Post, Nov. 24, 1915.
18. “Medico-Legal Society of New York Commends Dr. Haiselden’s Stand.” Washington Post, Nov. 18, 1915.
19. “Might Kill Baby to Use the Knife.” New York Times, Nov. 26, 1915.
20. “New-Born Cripple to Be Left to Die.” New York Times, Nov. 25, 1915.
21. “Physician Is Sustained in Baby’s Death.” San Francisco Chronicle, Nov. 20, 1915.
22. “Roberts Baby Dies Without Operation.” New York Times, Dec. 3, 1915.
23. “State Opens Inquiry: Illinois Officials Takes Up Bollinger Baby’s Case.” New York Times, Nov. 25, 1915.
24. “Surgeon Lets Little Child Die When Knife Could Have Saved It.” Washington Post, Nov. 18, 1915.
25. “Won’t Let Malformed Baby Die Despite the Wish of Its Parents.” Washington Post, Nov. 25, 1915.

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Pinker's Damn: A Naive Rejection of Controls Over Genetic Engineering

Posted by Stuart Newman, Biopolitical Times guest contributor on September 4th, 2015

golden Prometheus statute in New York City

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Some scientists like to think of themselves as modern counterparts of Prometheus, the Greek god who brought the creative power of fire to humankind. Privately they may express surprise that an activity – research – in which they take so much satisfaction can (at least potentially) attract public or private funds. But the fact that this occurs, and is indeed routine, only confirms their self-image as foremost among society's heroes. Much rarer is for scientists to question why this money flows to their enterprise, or how science and technology has helped those governmental and commercial institutions with such resources to dispense increase their leverage over everyone else.

There are other academics, frequently in quasi-scientific fields, who take it on themselves to publicly congratulate scientists for all the good that they do. How dare anyone presuming to speak on behalf of the public even suggest putting precautionary or ethical obstacles in the way of scientific research and its commercial implementation, they ask. “Get out of the way,” barks Steven Pinker, a Harvard psychologist, in a recent Boston Globe op-ed piece.

While addressing himself to professional bioethicists (a notoriously meek lot when it comes to recommendations that would alter the course of technological developments in any meaningful way), Pinker’s broader target is a purported pro-disease and pro-death lobby which he claims to be concerned about such things as “warehouses of zombies to supply people with spare organs.” Pinker’s disingenuous rhetoric notwithstanding,  after mammalian cloning was shown to be feasible in the late 1990s, there was in fact active discussion of producing genetically replicate humans (usually conceived as lacking a conscious brain) to provide replacement organs.

Pinker decries “perverse analogies with…Nazi atrocities,” assuring his readers that “we already have ample safeguards for the safety and informed consent of patients and research subjects.” He might have benefited from looking into the origins, at the Nazi war crime trials, of the Nuremberg Code, the basis of these “ample safeguards,” and the opposition to them while they were being drafted by the American Medical Association, using professionalist arguments much like his own. He might also have considered the evidence that the Code is routinely ignored.

Pinker mocks those skeptical of using the new CRISPR/Cas gene modification methods for “editing genomes” (presumably including those of humans, since his op-ed concerns human health). He supports his call to leave to the experts all decisions as to when, or if, to genetically engineer humans by invoking increased lifespan and decline of disease in prosperous countries –  as if these were attributable to biotechnology rather than improved nutrition and sanitation. Genuine advances in medicine due to molecular biology, such as treatments for heart disease and therapies for certain cancers, were arrived at by trial-and-error on volunteers chosen among desperately ill existing people with few alternatives. They were not intended as techniques for irreversible experimental refashioning of prospective people, as germline modification would be.

Non-specialists may not have the nuanced technical understanding of the CRISPR/Cas system that Pinker seems to believe qualifies one to make these decisions (though apparently technical expertise is not needed in order to cheer the scientists on). Anyone who follows the news, however, can read about the brewing industrial battles over patents for “gene drive” technologies that would permit a company’s preferred genes to displace natural variants, or those of competitors. They might also acquire an alternative perspective on the moral and social compass of some experts by following the stories of computer scientists aiding the government in the collection of massive amounts of personal data on ordinary citizens, or the design and participation in CIA torture programs by Pinker’s fellow members of the American Psychological Association.

Clearly not all experts or genetics researchers are inclined to take the low road by participating in such ethically unacceptable activities. The sad reality, however, is that the grip on technology by commercial and governmental centers of power ensures that scientists, whether Manhattan Project researchers (some of whom hoped that the Atomic bomb be used in a demonstration, not on population centers) or well-intentioned developers of antibiotics who have seen their efforts to alleviate disease turn into their opposite, do not control the fruits of their research, notwithstanding the optimism of certain aficionados of science.

Stuart A. Newman is professor of cell biology and anatomy at New York Medical College, where he directs a research program in developmental biology. He has contributed to several scientific fields, including the theory of biochemical networks and cell pattern formation, protein folding and assembly, and mechanisms of morphological evolution. He also writes on the social and cultural dimensions of biology and biotechnology, and was a co-founder of the Council for Responsible Genetics, Cambridge, MA. He is co-editor (with Gerd B. Müller) of Origination of Organismal Form: Beyond the Gene in Developmental and Evolutionary Biology and co-author (with Gabor Forgacs) of Biological Physics of the Developing Embryo.

 Previously on Biopolitical Times:

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Putting Ourselves in Harm's Way: Thoughts on Pinker and the Role of Bioethics

Posted by Nathaniel Comfort, Biopolitical Times guest contributor on August 12th, 2015

Red poster featuring a crown and the words

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"Get out of the way." So said the European colonists as they pushed indigenous Africans, Americans, Aborigines, and Maoris off their own lands to make way for Christianity, urbanization, Western medicine, industry, capitalism, railroads, and global warming. And so says Dr. Pinker on behalf of biomedicine, stating what, in his view, should be the "primary moral goal" for bioethics.

"Biomedical research," he writes, "promises vast increases in life, health, and flourishing." To him, ethics is but a horsefly dogging the progress of the potent, muscular thoroughbred of biomedicine—an annoying obstacle bogging down life-saving research in "red tape, moratoria, or threats of prosecution based on nebulous but sweeping principles such as 'dignity,' 'sacredness,' or 'social justice.'" If he and other scientific cheerleaders had their way, not only regulation of medical research but even serious discussion weighing potential harms and benefits would vanish, so that the researchers could get on with their task of saving the world.

Pinker's Panglossian paean notwithstanding, biomedicine, like industrialization, has a mixed legacy. Industrialization has brought improvements in public health and quality of life, reduction of death and suffering, and profound creativity and culture. But it has also led to the destruction of cultures and ecosystems, pollution, and climate change. Further, it has increased some forms of suffering—through, for example, sweatshops, child labor, and occupational disease and injury. Industrialists, too, like to cry "Get out of the way!" to regulators who think beyond the short term.

In support of his argument Pinker invokes nebulous but sweeping principles such as health, flourishing, suffering, disability, harm, and effective treatment—all terms with real but complex meanings that shift with time, context, and geography. A few decades ago, biomedicine considered homosexuality a mental disorder demanding treatment; today such a view is a barbarism. Until the 1970s, deafness was considered a severe disability demanding segregation and rehabilitation; today, the Deaf community has a vibrant and distinctive culture and genetic counselors sometimes help deaf couples increase their chances of having a deaf child.

And of course, the mother of all examples—the root of modern bioethics—is the Nuremberg trials, in which distinguished German physicians were charged with war crimes for carrying out unfettered human experimentation. With all ethical principles pushed out of the way, Nazi doctors were free to subject their "patients" to atrocities, often carefully controlled and carried out according to established principles of the scientific method—but against all norms of humanity.

But one need not Godwin the discussion to find examples of the value of regulation and ethical discussion of biomedical research. When ethicists got in the way, the decades-long Tuskegee study of untreated syphilis was finally halted, in 1972. When the historian Susan Reverby got in the way in 2010, she unearthed evidence of the deliberate infection of Guatemalans with syphilis and gonorrhea in the 1940s. When regulators got in the way in 2000, retroviral gene therapy experiments were temporarily halted, reining in the biomedical cowboys and doubtless saving the lives of patients like Jesse Gelsinger, the teenager who died mysteriously in a routine gene therapy experiment. When ethical discussion got in the way, William Halsted's radical mastectomy procedure for breast cancer—a life-saving, state-of-the-art technique in the early 1900s—was scaled back, preserving much more of the patient's tissue without sacrificing survivorship. When ethical discussion got in the way, the use of sentient animals such as chimpanzees and dogs in vivisection experiments was reduced or eliminated.

There's no denying that biomedicine has brought about many benefits to society. Even if its contributions were limited to antibiotics and anaesthesia, it would be a heroic, potent, and noble discipline. But with great power comes the potential for abuse. Biomedicine's promise for reducing suffering and improving our lives can only be maximized if research takes place in a context of reflection, deliberation, and regulation. Thinking these complex issues through takes time, and impatient researchers may become frustrated at times. Fidget away, Dr. Pinker.

Humanistic debate can help identify potential harm in research practice: critical ethicists and historians deliberately get in harm’s way to spare harm to others. The more powerful biomedicine becomes, the more we need critical discourse to keep its technical advances in humane perspective.

—Nathaniel Comfort is Professor of the History of Medicine at Johns Hopkins University. His latest book is The Science of Human Perfection.

 Previously on Biopolitical Times:

Forgotten Stories of the Eugenic Age #3: Divorce, “Crying Off,” and the Perils of Eugenic Perfection

Posted by Natalie Oveyssi on August 12th, 2015

Dorothy Rice Peirce in 1916. Source: Wikimedia Commons

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[Forgotten Stories of the Eugenic Age is a blog series exploring the lesser-known ways that eugenics affected and engaged American lives during the first half of the twentieth century.]

The previous installment of this series reviewed the early twentieth-century idea that eugenics could be a tool for selecting a good spouse and building a happy marriage. The optimistic eugenists promoting this approach might not have expected that eugenics could also play a role in the demise of romantic relationships.

Though divorce was difficult and stigmatized in the early 1900s, about 10 to 15 percent of American marriages were legally ended between 1910 and 1925. Judges typically only granted divorces for abandonment, adultery, or abuse. Perhaps because marriages were so often permanent, a woman could sue a man for damages if he ended an engagement to marry. (The reverse was rarely true, since it was considered a woman’s prerogative to change her mind.) Eugenics featured in several “breach of promise” cases because it was a convenient and seemingly moral reason for a man to “cry off.”

In the most high-profile and dramatic of these cases, covered by the Washington Post in 1916, Sigma Ahlgren sued Ward Hall Ream for $10,000 for ending their engagement. Ream had reneged on his promise to marry Ahlgren when her doctor, Lucetta Morden, diagnosed her with tuberculosis, a disease many believed was inheritable. Although Ream affirmed that Ahlgren was a “respectable young woman,” he claimed she didn’t meet his “ideal of a mother.” Ahlgren denied that she was tubercular and argued that she had since obtained two physicians’ certificates indicating that she was “a magnificent specimen of womanhood.” She further declared that she would be willing to “‘prove it in open court,’ if the judge wants her to.” (The Washington Post article notes sardonically, “The judge doesn’t.”)

Ahlgren offered an alternative reason for Dr. Morden’s diagnosis: a nasty love triangle. She accused Morden, Ream’s longtime family friend, of being a “catty” rival for his affections. Morden denied that she harbored romantic feelings for Ream, only admitting to a “friendly interest.” The court hearing eventually fell into disorder, with Ahlgren and Morden sniping at each other about their age and physical appearance.

In a similar breach of promise case, Rose Markewsky brought a $25,000 suit against Charles F. Drucker after he broke off their engagement. Drucker alleged that he ended their engagement when he discovered that Markewsky's brother had tuberculosis. Markewsky refuted this accusation, adding that her brother “is a stronger man than Mr. Drucker.” She continued, “I might have been entitled to break the engagement from a eugenic standpoint, but certainly Drucker was not. I can play better golf and tennis than he can today. I was never ill a day in my life.”

In yet another case, David Arthur Greenhouse of New Jersey ended his engagement with Bertha Schechtel when she told him that she was infertile. Schechtel sued for breach of promise, but the judge found for Greenhouse, declaring that a man had a right to children, children had a right to "a heritage of mental and physical health," and matrimony "concerns the entire human race." The judge said, "A man or a woman is justified in withdrawing from a marriage contract if he finds that his, or her, prospective life partner has a sufficiently serious physical or mental defect.”

If publicly labeling one’s former romantic partner as biologically inadequate appears cruel, perhaps even more striking than the breach of promise cases are the dissolution of eugenic marriages. In 1914, the Washington Post highlighted the story Josephine and Joseph Sanger of Cleveland, each of whom hurried to beat the other to the local courthouse to file for an annulment of their eugenic marriage. In their suits, each alleged that the other had “misrepresented [his or her] physical condition.” Said Mrs. Sanger, “He told me he was a marriageable, healthy man. I found out he wasn’t.”

Yet another eugenic marriage unraveled after only one month. Both Mr. and Mrs. Perron had obtained eugenic health certificates and both had “declared that their mating was in strict accord with scientific principles.” But after only a few weeks of marriage, the groom told police that he had been assaulted by a man whom he had encountered alone with his wife. In her defense, the bride complained that all of the eugenic praise had inflated her husband's ego.

Though all these stories about the termination of eugenic marriages made news, the public was particularly shocked by the divorce of Waldo and Dorothy Rice Peirce.* Waldo was a former Harvard football star, World War I ambulance driver, and rising painter. Dorothy was a millionaire heiress and famous aviatrix who had trained women war pilots. While there is no evidence that Waldo and Dorothy regarded their marriage as a “eugenic” one, many others saw it that way. Waldo and Dorothy seemed like the perfect couple, and in accordance with eugenic principles and eugenists’ promises, their marriage ought to have been a happy one. Nonetheless, the New York Times reported in 1917 that Dorothy filed for divorce from Waldo on grounds of non-support and cruel and abusive treatment.

Newspaper stories grappled with the question of how a relationship between two such perfect—even eugenic—individuals could fail. The December 9, 1917, issue of the San Francisco Chronicle included a full page spread on Dorothy and Waldo’s divorce with photographs of the unhappy couple, entitled “The Sad and Very Imperfect Romance of a Perfect Man and Perfect Woman.” The article stated that when Dorothy and Waldo married in 1912, the public saw it as “the test of a new biological theory—the mating of two perfect persons.” It continued:

The young couple were hailed as the progenitors of a new race: exponents of the theory that only the perfect man and the perfect woman should be allowed to marry. Scientists, surgeons and medical men, educators and ministers, legislators and sociological theorists, witnessed the marriage with great expectancy, hoping it would prove and that the children that should come of it would prove the contention that eugenic principles and not the impulses of the heart should be the foundation of every marriage license.

But now, the perfect man and the perfect woman “declare that perfection, like familiarity, breeds contempt.”

The article attributed to Dorothy the claim that her husband was violent because of his pride in his physical perfection and to Waldo the accusation that Dorothy's bohemian eugenic upbringing, fashioned by her mother to mold her into the "perfect woman," had skewed her marital expectations. Although Waldo had passed the eugenic tests upon which Dorothy's mother had insisted, their marriage had not lasted. How could perfection have gone so wrong?

From our twenty-first century vantage, perhaps a better question is why the public was so surprised, and how twentieth-century Americans so easily accepted eugenic claims about perfection. It seems fairly obvious that expectations of flawlessness are rarely met by fallible people in a complicated world. And a close look at the intricate social effects of historical eugenics reveals that just as the label of "defective" can do harm—in the cases of individuals sterilized and institutionalized, or, more simply, in promises broken—so can the label of "perfection." Treating individuals not as complex human beings with intrinsic worth but as gradations on some arbitrary "quality" scale not only hurts those who do not rate highly, but places unrealistic expectations on those who do. The greater the external pressures for perfection, the more profound the sorrow, disappointment, and shame when we inevitably fall short. This pain is even more acute when the pressures emanate from those who have promised to love us.

After Dorothy Peirce's marriage ended, her "heartbroken" mother said, "I had hoped my daughter would be honored in all future histories of the world as the creator of the perfect race. I am sorry she could not become more than a mere wife—and an unhappy one at that.”

For her part, Dorothy pledged, "I want no more perfect men. My next husband will have been examined most carefully before we approach the altar, not for perfection, but for signs of the faults that will make him human.”

*Some sources incorrectly spell their surname as "Pierce."

1. “Aviatrix Seeks Divorce.” New York Times, Oct. 16, 1917.
2. “Eugenics and Law in Charge to Jury.” New York Times, Dec. 18, 1914.
3. “Eugenics Breach of Promise Suit Due to ‘Catty’ Rival, Declares Girl.” Washington Post, Feb. 27, 1916.
4. “Eugenic Bride Packs Up Her Belongings.” Boston Daily Globe, Jul. 29, 1913.
5. “Failure in Eugenics." Washington Post, Aug. 24, 1913.
6. “Girl Says Eugenics Broke Troth, Sues Man.” St. Louis Post-Dispatch, Aug. 29, 1913.
7. “History in the Making: First Eugenic Marriage Is Failure.” San Francisco Chronicle, Aug. 17, 1913.
8. “Jilted by Eugenic Wooer.” Washington Post, Feb. 26, 1916.
9. Jones, Audra M. “Historical Divorce Rate Statistics.” Accessed August 5, 2015. http://divorce.lovetoknow.com/Historical_Divorce_Rate_Statistics.
10. “The Sad and Very Imperfect Romance of a Perfect Man and Perfect Woman.” San Francisco Chronicle, Dec. 9, 1917.

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Slipping Into Eugenics? Nathaniel Comfort on the History Behind CRISPR

Posted by Elliot Hosman on July 23rd, 2015

Nathaniel Comfort pictured

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It’s great to see The Nation – a venerable journal of progressive opinion and analysis – expanding its coverage of human biotechnologies. In the past few years, Patricia J. Williams’ regular column “Diary of a Mad Law Professor” has taken on topics including precision medicine, “genetic race,” and surrogacy. Now, historian Nathaniel Comfort’s epic article, “Can We Cure Genetic Diseases Without Slipping Into Eugenics?,” looks at the new DNA editing tool CRISPR in the context of the United States’ eugenics movement.

Nathaniel Comfort – author of The Science of Human Perfection and recent guest on Talking Biopolitics with fellow eugenics historian Alexandra Minna Stern – writes about enthusiasts who advocate using new genetic engineering techniques to attempt to alter the traits passed on to future generations, a practice called human germline modification. Some public personae embrace the term “liberal eugenics” and argue that  a “free-market environment with real individual choice” is the best way to protect us from repeating past eugenic abuses. But, as Comfort warns, “liberal eugenics is really neoliberal eugenics.” And the invisible hand of the market isn’t pulling back on the reins of technological progress anytime soon.

In countries outside the U.S. with a more honest memory of state-controlled human betterment projects, there is no beating around the bush of what’s at stake. In addition to the history of public outcry that Comfort recounts, there has been an international consensus for decades that engineering the human germline is off-limits. More than 40 nations have passed legislation to ban it outright—including nearly all nations with developed biotech sectors except for the United States. The United Nations has declared the human genome the “heritage of humanity” which ought to be protected and transmitted to future generations—without markups and edits. And UNESCO’s International Bioethics Committee has stated that justice demands we do not interfere with the biology of future humans based on the “particular conceptions of ‘good’ and ‘bad’ human traits” of our time.

The debate about CRISPR gene editing is currently dominated by discussion of whether it would be “safe” to edit human embryos, a fixation that serves to downplay the historical, social, and political contexts that Comfort so richly describes.  While CRISPR and related techniques can also be used as “gene therapy” to help people who are sick, the argument that gene-editing human embryos is a necessary medical treatment is tenuous: Couples concerned about passing on serious genetic diseases can use pre-implantation genetic diagnosis to screen embryos—and although this technology also raises eugenic concerns, it does not pose the same biological and societal threats as does the genetic manipulation of the human germline.

When he moves from history to current politics, Comfort explores the ways in which the issue of human germline gene editing can scramble political allegiances, precisely because of the larger motivators—private interests and social inequality—that a system wed to neoliberal individualism is failing to address. In an age where personal choice can easily obscure the impact of our self-interested decisions on others, developments in human biotechnology present many ways to stumble. Comfort concludes:

In short, neoliberal eugenics is the same old eugenics we’ve always known. When it comes to controlling our evolution, individualism and choice point toward the same outcomes as authoritarian collectivism: a genetically stratified society resistant to social change—one that places the blame for society’s ills on individuals rather than corporations or the government.

I’ll be excited to watch the workaday applications of techniques like CRISPR unfold, in medicine and, especially, basic science. But sexy debates over whether reproductive biotechnology will permit us to control our genetic evolution merely divert us from the cultural evolution that we must undertake in order to see meaningful improvement in human lives.

Previously on Biopolitical Times:

Forgotten Stories of the Eugenic Age #2: Eugenics, Love, and the Marriage Problem

Posted by Natalie Oveyssi on July 20th, 2015

Wedding dress, 1910s. Source: Wikimedia Commons

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[Forgotten Stories of the Eugenic Age is a blog series exploring the lesser-known ways that eugenics affected and engaged American lives during the first half of the twentieth century.]

For American women in the early twentieth century, marriage was a dangerous affair.

Upon her marriage, a woman’s civic and social identity became subsumed in her husband’s. A wife was expected to be subservient in the home and in the marital bed. If a husband became abusive, indifferent, or otherwise lackluster, she had little recourse. Divorces were rare, difficult to obtain, and stigmatized.

Even if a woman could obtain a divorce on grounds of cruelty or adultery, separation was often impractical. Few women worked after marriage and even fewer after having children, leaving most financially dependent on their husbands. To make matters worse, judges in divorce cases typically awarded custody of children to their fathers. Sexually transmitted diseases were rampant, alcoholism was epidemic, and even discussion of these serious matters—especially in regards to their impact on women—was considered uncouth. For all these reasons, a woman’s choice of spouse was likely to be one of the most important determinants of her lifelong happiness.

But broad social changes were afoot. The middle-class “True Woman” of the Victorian Era—passive, pious, frail, and domestic—was facing challenges from the Progressive Era “New Woman”—passionate, opinionated, independent, and well-educated. The New Woman studied in university, worked before marriage and occasionally after, and didn’t hesitate to tackle some of the more difficult and uncomfortable marital and reproductive matters of the time.

In this context, the field of eugenics emerged as a lens through which white middle-class women could more deeply examine these issues and solve the “marriage problem.” As a 1909 Current Literature article declared, “Marriage is, essentially, a science.” And indeed, eugenists advised women to learn all they could about the scientific basis of marriage, and then put the facts into practice in life’s laboratory. If women carefully studied eugenics, they could determine with the greatest accuracy which man to marry to ensure a happy future.

Eugenists argued that the negative traits men could display after marriage, such as alcoholism, promiscuity, feeble-mindedness, and cruelty, all had a hereditary basis. Furthermore, claimed Dr. Woods Hutchinson, Clinical Professor of Medicine at New York Polyclinic, these traits were not limited to "the communities of chicken thieves [and] feudists who fight and inbreed among themselves and live like animals," but could also be found "on the roof of society, among the idle and mentally weak." Since any man regardless of class status or outward appearance could have hereditary defects invisible to the untrained eye, middle-class women hoping for a happy marriage had to be vigilant to protect themselves.

Here, eugenists combined an insistence on the hereditary nature of most undesirable traits with a healthy scorn for the traditional practice of shielding middle-class women from some uncomfortable truths about sex and married life. Dr. Anna Blount, one of the most well-known women eugenists, warned that eugenically inferior men were more likely to contract devastating venereal diseases—euphemistically called “red light diseases” or “social diseases”—that they would then pass on to their wives and subsequent children. Even "modern novelists," Blount wrote, are unable to convey the misery of "the blooming bride transformed in a few short months to the querulous invalid, or returning from the surgical operation at the hospital with the best of life and hope gone." Blount further cautioned that cruelty and the propensity for wife desertion were hereditary. Women needed to educate themselves about eugenics to safeguard against marriage to such men.

Dr. Norman Barnesby counseled that alcoholism was either a symptom or a cause of natural inferiority. Women may idealize marring an alcoholic man to reform him, but these innately hopeless causes would produce a "wrecked life and a dreary home." With statements like these, eugenists warned women that despite their hopes that the men they marry will abandon their damaging habits, love cannot eliminate inborn qualities.

Along with developing awareness of eugenic principles, eugenists emphasized that women could undertake special eugenic training to help identify signs of insidious degeneracy in prospective marriage partners. Professor Dean Inge of Cambridge University and the Eugenics Education Society claimed that without eugenic knowledge, women might find themselves drawn simply to a man's "fine and strong physique," despite lack of adequate information about his health. But the development of a "scientific eye" could help them avoid these womanly pitfalls.

Virginia Hinkins, who taught eugenics at Indiana University's YWCA, provided some concrete love-interest examination tools. When gazing deeply into a lover's eyes, she advised, women should not look for the "yearning, burning, soulful fires, which rage in the erotic litany of love," but for symptoms of eye disease. She continued, "His heart, to beat true, must pump seventy-two to the minute, and his sighs should rest under suspicion as indicating a liverish and morbid disposition." Eugenists also pressed for local and state governments to adopt laws requiring men and women hoping to marry to first present a eugenic health certificate signed by a physician indicating that they were fit to wed.

If these suggestions appear to strike a blow to romance, eugenists certainly didn't think so. Dr. Elizabeth Hamilton-Muncie asserted that eugenists wanted love to be essential for marriage but also desired that couples love "with their eyes open and brains active." Learning about eugenics would enable women to pursue romantic relationships with a healthy dose of common sense, contributing to a more informed, and thus purer, love. Notable British eugenist and sexologist Havelock Ellis wrote that marriage between two young healthy “wholesome wooers” in love was more likely to benefit the race than a money marriage between a young woman and a sick, elderly man. Love marriages were often eugenic by nature compared with marriages for money, social status, or simple convenience because love required people to find worthy characteristics in one another.

Some newspapers bolstered this connection between eugenics, love, and marriage with profiles of “eugenic” weddings. These weddings typically occurred between wealthy, well-educated, and socially prominent men and women who were vocal about their support for eugenics and their conviction that their marriage conformed to eugenic ideals. Along with the usual details about the bride’s family, the groom’s occupation, and the honeymoon destination, these flattering profiles frequently described the couple’s physical qualifications and eugenic credentials.

One such eugenic wedding occurred between Leo B. de Lano—quite the renaissance man as an "athlete, aquatic hero, temperance advocate, hat salesman, USC graduate, adventurer, and extremist”—and Betty Wehrle, "about as pretty a girl as ever posed for an artist." A Los Angeles Times article noted that de Lano was 5 feet 10 inches tall and 175 pounds, Wehrle was 5 feet 4 inches tall and 110 pounds, and both were “perfect blondes” who were “practically perfect physically,” as evidenced by the eugenic health exams to which they had submitted before agreeing to wed.

The previously cited Virginia Hinkins, who herself had a eugenic wedding, said that eugenic marriages were born out of “a normal desire to know the standing of a life partner, the only human insurance we can get for permanent love and happy married life." At a time when women’s life options significantly diminished after marriage, some middle-class women turned to eugenics in fervent hope that this “science” could assist them in making the best possible marital choice. In a way, focusing on scientific selection of a spouse was a way to avoid addressing the serious issues women faced once they were married. Eugenics provided assurance that women could identify a good husband, and that happiness would naturally follow.

Yet women’s interest in eugenics during this period also indicates their concerted effort to grapple with the difficulties and dissatisfactions of marriage and to claim greater control over their lives. It is poignant that in the early twentieth century, marrying eugenically appeared more attainable than social reforms to expand married women’s economic and legal options and to reduce the stigma of domestic abuse.

1. Barnesby, Norma. "Eugenics and the Child." Forum (Mar. 1913): 341.
2. Blount, Anna. "Effect of Divorce on the Next Generation." San Francisco Chronicle, Jan. 28, 1917.
3. Blount, Anna. "What Marriage Health Test Bill Means If It Becomes Law." San Francisco Chronicle, Mar. 18, 1917.
4. Dicker, Rory. A History of U.S. Feminisms. Berkeley, CA: Seal Press, 2008.
5. Ellis, Havelock. "Why First Love Is Always Wrong." Chicago Daily Tribune, Nov. 24, 1912.
6. "Eugenic Wedding to Begin the New Year." Los Angeles Times, Jan. 01, 1914.
7. "The Future of Love-Making in the Light of Science." Current Literature OL. XLI, (Jul. 1906): 97.
8. "Marriage As the Youngest of the Sciences." Current Literature OL. XLVI., (May 1909): 561.
9. "Real Eugenic Marriage." Los Angeles Times, Dec. 31, 1913.
10. Schneider, Dorothy and Carl J. Schneider. American Women in the Progressive Era, 1900–1920. New York: Facts on File, 1993.
11. "'Science First' in This Wooing." Chicago Daily Tribune, Oct. 25, 1915.
12. "Science in Marriage: Knowledge of Eugenics Would Prevent Unwise Unions." Washington Post, Mar. 20, 1910.
13. "Won't Banish Cupid: Dr. Elizabeth Muncie Defends the Purpose of Eugenics." Washington Post, Jul. 07, 1914.
14. "Would Check Birth of All Defectives." New York Times, Sep. 21, 1912.

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First Federal Bill to Acknowledge US Eugenics Would Help Victims of State Sterilization Programs

Posted by Jonathan Chernoguz on July 8th, 2015

Image via Wikimedia

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A bipartisan bill introduced in the Senate on June 25 would give a financial break to people in North Carolina and Virginia who were sterilized under those state’s official eugenics programs, and who are now hoping to receive compensatory payments that have been established by their state legislatures. If passed, it would be the first federal legislation to recognize the history of sterilization abuse that took place during the twentieth century in the name of eugenics.

Senate Bill 1698 would exclude payments from current or future state eugenics compensation programs from consideration in determining eligibility for Federal benefits including Medicaid, Supplemental Nutritional Assistance Program, Supplemental Security Income, and Social Security Disability Insurance. It was introduced by Senator Thom Tillis (R-NC), who was joined by Senators Mark Warner (D-VA), Tim Kaine (D-VA), Tom Carper (D-DE), and Richard Burr (R-NC). On July 8, Congressman Patrick McHenry (R, NC-10) and Congressman G. K. Butterfield (D, NC-01) introduced companion bill H.R. 2949, the “Treatment of Certain Payments in Eugenics Compensation Act,” in the House of Representatives. 

Between 1907 and 1977, 33 states passed laws authorizing eugenic sterilization of various categories of people (including “criminals,” the “mentally ill,” and the “feeble minded”). Populations most often targeted by the eugenics programs were unmarried women, African-Americans, and poor children.

Only two states have issued plans for reparation through monetary compensation.  North Carolina became the first to enact legislation to compensate living victims of forced sterilization laws in 2013, setting aside a $10 million compensation fund.  Following North Carolina’s example, Virginia passed similar legislation in 2015.  While North Carolina identified 220 living sterilization survivors; Virginia has identified only twelve so far. Virginia will award $25,000 to each involuntarily sterilized person who was alive as of February 1, 2015. 

Unfortunately, many North Carolinians and Virginians who were sterilized against their will do not qualify for reparations, and thus would receive no benefits from the newly introduced federal legislation.  The states’ current compensation laws say that to be eligible for compensation, the sterilization operation must have occurred under the state's Eugenics Board.  However, judges, local health officials, and social service workers were also permitting and arranging sterilizations, as in the case of Debra Blackmon

In a short video about the bill, Senator Tillis encourages “other states to follow North Carolina’s lead, as Virginia has recently done, to right this wrong in our nation’s history.”

Previously on Biopolitical Times:

Forgotten Stories of the Eugenic Age #1: How “Better Babies” Became “Fitter Families”

Posted by Natalie Oveyssi on July 7th, 2015

Fitter Family contest medal, awarded by the American Eugenics Society, 1920s. Source: Center for Genetics and Society

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Forgotten Stories of the Eugenic Age is a blog series exploring the lesser-known ways that eugenics affected and engaged American lives during the first half of the twentieth century.

Eugenics became a popular ideology in the United States beginning in the second decade of the twentieth century. Concerned with producing a stronger and fitter population through the careful and often coercive control of reproductive behavior, eugenics captured the attention of a citizenry eager to use science to solve its social problems.

Many scholars divide the early eugenics movement into two branches: “positive” and “negative” eugenics. Positive eugenics was the encouragement of reproduction for those believed to be of superior hereditary stock, in contrast to “negative” eugenics, the discouragement or prevention of reproduction for those deemed hereditarily “unfit.” Many eugenists, as eugenic advocates were known, believed that the goals of positive eugenics could be achieved voluntarily through education campaigns, while negative eugenic aims would require more coercive means for attainment, such as mass sterilization and immigration quotas.

Baby health contests at agricultural and state fairs perhaps most vividly exemplify popular campaigns for positive eugenics. Judges at these contests examined infant contestants according to a set of criteria for physical health and intelligence that included factors such as shape of the head, width between the eyes, condition of tonsils, strength of spine, and ability to walk or crawl. They quite tellingly employed scorecards derived from those used to judge livestock. First begun in 1908 at the Louisiana State Fair, baby health contests spread to forty states within just a few years.

However, somewhere along the eugenic line, "Better Baby" contests, as they were known, morphed into "Fitter Family" contests that examined not only the baby but the whole family. Scholars have attributed this change to a shift in focus from the health and development of the child towards a more comprehensive look at hereditary history, in keeping with the principles of eugenics. But how exactly did this change transpire?

Mary T. Watts, co-founder of the Better Baby contests, revealed the impetus for the transformation in an address at the Thirty-third Annual Meeting of the International Association of Fairs and Expositions in 1923.

As Watts recounted, shortly after she began the Better Baby contests in her home state of Iowa, she received a letter in the mail from none other than Charles B. Davenport, a titan of the eugenics field. Davenport wielded significant influence as the director of the Biological Laboratory at Cold Spring Harbor, the Eugenics Record Office, and the Carnegie Institute of Washington’s Station for Experimental Evolution.

On a one-cent postcard, Davenport had written only, “You should give 50 per cent to heredity before you begin to score a baby.” Overwhelmed by answering inquiries from intended Better Baby organizers across the United States and Canada, Watts placed the letter aside and forgot about it.

The following year, she received yet another terse postcard from Davenport with the single ominous sentence, “A prize winner at two may be an epileptic at ten.” Watts, who had since become aware of Davenport’s authority in eugenics, understandably found the postcard “so startling it could not be ignored.”

Watts shared Davenport’s letter with her Better Baby co-founder, Dr. Florence Sherbon, who noted that many prize-winning babies likely had alcoholic fathers, diseased mothers, or insane relatives. Perhaps Davenport was on the right track; rather than examining babies alone, in order to truly test for eugenic ideals, judges must look to a baby’s family as well. How else could they tell if a baby was “better”?

Watts and Sherbon decided that they wanted to insert family and heredity tests into the contests, but were concerned that doing so would eliminate their popular appeal. It took the pair six years to develop a satisfactory approach. They presented their plan for Fitter Family contests to a group of experts who offered a mixed response.

The experts universally approved of the reasoning behind the new plan, but felt that Fitter Families would not be able to replicate the smashing success of Better Babies. Watts recalled that the experts said, “You can bring the baby to the fair because he cannot help himself, but you will never get the fathers and mothers to a fair for physical and mental examinations.” The experts were especially concerned that adults would not submit to the Wassermann test for syphilis, presumably because some would not want their spouses to discover the results.

Nonetheless, the experts assisted in making a scorecard to judge not only the babies’ physical and mental qualifications, but also those of their parents and siblings. All were shocked when twenty families entered the first Fitter Family contest at the Kansas Free Fair in 1920. The Fitter Family contest organizers continued their newfound relationship with Davenport well into the 1920s, as Sherbon and Watts sought his advice on their family history forms and contest procedures.

Critics of the Fitter Family plan had said that “we could never hope to interest educated, self-respecting families in physical examinations for adults at a fair ground.” But, Watts stated proudly in her 1923 address, the Fitter Family contests were thriving. And the organizers and contestants—as well as the eugenic cause—could thank Charles Davenport, whose postcards had provided the spark that lit the fire.

1. Lovett, Laura L. “‘Fitter Families for Future Firesides’: Florence Sherbon and Popular Eugenics.” The Public Historian 29, no. 3 (Summer 2007): 69–85. JSTOR.

2. Selden, Steven. “Transforming Better Babies Into Fitter Families: Archival Resources and the History of the American Eugenics Movement, 1908–1930.” Proceedings of the American Philosophical Society 149, no. 2 (June 2005): 199. EBSCO host.

3. Watts, Mary. "Fitter Families for Future Firesides." Billboard 35, no. 50 (Dec. 15, 1923): 230–231. ProQuest.

Previously on Biopolitical Times:

No Más Bebés: A Documentary on the Sterilizations of Latina Mothers at an LA County Hospital

Posted by Jonathan Chernoguz on June 15th, 2015

Carolina “Maria” Hurtado, one of the five women interviewed who was sterilized without her consent.

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During the late 1960s and early 1970s, some women who went to Los Angeles County-USC Medical Center (LAC+USC) to deliver their babies went home without the ability to have children again. 

The documentary No Más Bebés, Spanish for “no more babies,” portrays the stories of Mexican-American mothers who were coercively sterilized at LAC+USC during those years. Directed by Academy Award nominee Renee Tajima-Peña and produced by UCLA historian Virginia Espino, the film premieres at a sold-out screening on Sunday, June 14 in the LA Muse section of the Los Angeles Film Festival. An additional screening has been added to the film festival on Tuesday, June 16 due to popular demand.

The film explains that women were asked by their obstetricians to sign consent forms for emergency caesarean sections while in the late stages of active labor. Most did not speak English; many do not recall being offered these forms. None knew that they were agreeing to tubal ligation procedures while giving birth. 

As the film depicts, these women sued their doctors in the landmark Madrigal v. Quilligan case after they discovered they had been sterilized. It juxtaposes rare archival footage of the trial and the emerging Chicano rights movement with recent interviews of the women who were subjected to the unwanted procedure.

Madrigal v. Quilligan was a federal class action lawsuit involving the sterilization of ten Latina women without informed consent. Initially, the lawsuit named Dr. Edward James Quilligan, head of the Women’s Hospital at LAC+USC when the sterilizations were taking place; the LAC+USC Medical Center; the Department of Health, Education, and Welfare; and the U.S. Government. The defense argued successfully that charges against Dr. Quilligan and others holding positions of power within LAC+USC should be dropped, leaving as defendants the ten doctors who performed sterilization procedures on the plaintiffs. This in effect transformed the case into a set of personal grievances, rather than a case against institutional biases.

While the lawsuit led to better informed consent for patients, requiring that hospital forms are translated to multiple languages so that patients can understand the procedures completely, the judge ultimately sided with the county hospital, ruling in favor of the doctors. He argued that it was not objectionable if a physician thought that a tubal ligation could improve a perceived overpopulation problem. 

The documentary interviews a wide range of the key figures in the case: the lead plaintiff, Dolores Madrigal; defendant Dr. Edward James Quilligan; five other women sterilized without their consent; and Antonia Hernandez, the lawyer who represented them in the trial. It also includes Dr. Bernard Rosenfeld, who suspected that Mexican immigrants were being sterilized by tubal ligation without their consent and helped expose the malpractice at the hospital. Rosenfeld is now a nationally known specialist in tubal ligation reversal surgery.  

No Más Bebés draws on the growing body of research into the history of sterilizations in California by scholars such as Elena Gutiérrez and Alexandra Minna Stern. Unfortunately, this history is not that far behind us. In 2003, California Governor Gray Davis issued an apology  acknowledging that “between 1909 and 1964, an estimated 20,000 Californians were sterilized” under California law in state-run institutions. However, the apology does not address the sterilizations that took place at LAC+USC during the 1960s and well into the 1970s.

Even more recently, evidence emerged of unauthorized sterilizations in California prisons due to persistent efforts by Justice Now and an extensive investigation by Corey Johnson of the Center for Investigative Reporting. Those revelations prompted a state audit and a 2013 bill, authored by State Senator Hannah-Beth Jackson, which prohibits coercive sterilization for the purpose of birth control for people incarcerated in California prisons. 

No Más Bebés will alert many more people to these sadly under-recognized chapters of California’s past, while educating its viewers about the coerced sterilizations at LAC+USC and honoring the women who were its victims by sharing their stories.

Previously on Biopolitical Times:

The Scope of Eugenics: A Workshop

Posted by Jonathan Chernoguz on May 27th, 2015

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The Scope of Eugenics, held at the Banff Centre from May 22-25, focused on eugenics as both a historical practice and an ideological motivation. In addition to many presentations about the history of eugenics in North America, the conference sought to connect these historical examples to what participants called “Newgenics.”

Newgenics is a term used to describe current and emerging medical, political and social practices aimed at “improving” humankind, and at eliminating disability and difference. These goals are often accomplished through gentler means than those historically used in the service of negative eugenics. But Newgenic practices include coercive sterilization as well as, prenatal testing, educational standards, and institutionalization. Human germline modification, now being discussed as a real prospect, would also fall in this category. Newgenics retains the same eliminative logic of twentieth-century eugenics, though often in more subtle and differently problematic ways.  

The four-day workshop was organized by Robert Wilson and Moyra Lang of the Edmonton-based Living Archives Project on Eugenics in Western Canada.  It brought together early-career scholars interested in eugenics, and celebrated significant student contributions made to the Living Archives Project, which is supported by the Community University Research Alliance and Social Science and Humanities Research Council of Canada.

In attendance were Judy Lytton, Leilani O’Malley (Muir), and Glenn Sinclair, whose stories are featured in the upcoming documentary Surviving Eugenics, which provides a unique insiders' view of life in institutions for the "feeble-minded" during the mid-twentieth century, and raises broad questions about disability, human variation, and contemporary social policies. The film’s protagonists are people who were themselves sterilized at the Provincial Training School for Mental Defectives in Red Deer, Alberta, and their testimonies added a uniquely personal experience to the discussions of emerging Newgenic issues.

Members of The Living Archives Project spoke as well. Nicola Fairbrother, who interviewed the survivors, discussed the importance of taking personal testimony from people whose voices are typically silenced and devalued. Fairbrother’s work amplifies these voices and stories, both in the documentary and in the “Our Stories Told” section of the online Eugenics Archives. Living Archives member Justin Houle spoke about his work creating “Newgenics: The Game,” which aims to reach a younger demographic on the Archive’s webpage. 

Both The Scope of Eugenics conference and the Eugenics Archives reflect the collaborative work of scholars, sterilization survivors, students, and university and community partners in challenging eugenics in a balanced and informative way. You can explore the online Archives’ ten tools, including personal narratives, the Newgenics game, timelines, and other visual representations, to learn more about the history of eugenics and to connect that legacy to our realities today.

Previously on Biopolitical Times:

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Why Facebook’s Egg Donor Ads Freak Me Out (And Should Freak You Out Too)

Posted by Sayantani DasGupta, Biopolitical Times guest contributor on April 27th, 2015

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Three white chicken eggs with smiley faces drawn on them peer out at me from a Facebook ad. (Notably, a Facebook ad forwarded to a listserv by a young woman in college, not one that popped up in my own middle-aged Facebook feed.) One of the smiling eggs exclaims, “Donate Me and Help Make a Family!”

Fifteen or twenty years ago, this ad would have made little sense. Donate a chicken egg to create a family? But in today’s brave new reproductive world, where in-vitro fertilization, commercial surrogacy, and sperm and egg donation are no longer obscure medical secrets but commonplace knowledge, it’s fairly obvious to most people viewing this ad that it is targeted at young women, encouraging them to “donate” their ova.

I put the word “donate” in quotes above because unlike kidneys, ova are not usually “donated” in this country. While it is illegal to offer economic compensation to people for other sorts of organ donation (due, rightfully, to the bioethical concern that this will create a market for human organs, and impoverished people will be unequally coerced into selling their body parts), getting paid for giving up your ova (and sperm) is perfectly legal in the U.S.

But why is it particularly worrisome that ads for ova donation have made it onto personalized Facebook feeds?

The Commodification of Women’s Bodies: Economic Coercion

Back when the only egg donation ads I saw were in the hallways of the Ivy League medical school in which I teach, I was equally concerned. Whether on digital or brick-and-mortar walls, ova donation ads make clear that women’s bodies and body parts are commodities to be bought and sold. Which of course begs the deeply troubling question — are women’s bodies things to be owned and traded on the open market?

Whatever a young woman’s opinion on bodily “ownership,” the economic inducement is so significant ($5,000–10,000, with higher fees going to donors with Ivy League educations, high IQs and preferred ethnic and racial features) that a young woman does not need to be in dire financial straits to feel tempted by the quick and supposedly easy money of egg donation. From medical bills to house payments to college and graduate school debts, young women use egg donation payments in myriad ways. And besides, you get to help someone, right?

Yet, the altruistic rhetoric of “helping create families” and “women helping women” only serves to distract us from the fact that ova donation is ultimately a booming business, and as such, it is about the money, honey. (Without the economic compensation, would many young women do it?) As of 2007, the assisted reproductive technology industry in the U.S. was a $6.5 billion for-profit industry, and growing. Fertility clinics and other middlemen are clearly invested in keeping this lucrative business going.

Lack of Transparency About Health Risks, and the Lack of Research

Unlike sperm donation, which has few to no health risks and indeed usually involves free porn, ova donation is a risky business. As a complex medical procedure involving hormones, injections, blood draws, anesthesia, and a surgical procedure to extract a body part, many things can go wrong with ova donation. The risks of egg donation include bleeding, pain, stroke, kidney disease, ovarian cysts, torsion, infertility, and even death. The Center for Bioethics and Culture argues,

OHSS (ovarian hyperstimulation syndrome) is caused by the process of superovulation and is well-documented in the medical literature as a risk associated with women who take fertility drugs to stimulate ovulation. It is also documented in the literature that young women are more at risk for OHSS.

These risks are not, however, freely shared with the young women donating their ova. Indeed, there is very little research being conducted, little data being gathered about the long-term health effects of ova donation — if donating ova earlier in life affects later-in-life fertility, cancer rates, or other diseases. And that, as the award-winning documentary film Eggsploitation suggests, is the fertility industry’s “dirty little secret.”

Racist Elitism: A New Eugenics

“Make another woman’s dreams come true!” cried the advertisement I used to see (and systematically take down) on the walls of the medical school where I teach. The ad infuriated me not only due to how it signaled a commodification of women’s bodies, but also in its obviously racist, and elitist, implications. “Ivy League Donors Wanted,” read the subheading. The photograph in the advertisement was of a young, smiling blonde woman, clearly indicating that this was the kind of Ivy League–educated woman who was desired. In the words of an article from The Journal of Health Care Law,

Wealthy couples, who utilize egg brokers or high-profile advertisements, do not seek general traits. These couples are seeking a “perfect gene pool” for their commodity — notice the highly sought-after donor is a woman who has blonde hair, blue eyes, received a 1400 on her SAT, attends an Ivy League school, and who preferably has some additional talents such as music, sports, or theatre.

These perspectives make women with such highly desirable traits prized reproductive commodities, and clearly sends the broader social message to all women that we are only valued for our abilities to produce genetically favorable offspring. Interestingly, a more recent study indicates that this racially motivated preference may be changing, as couples using egg donors choose “brains” over perceived “beauty.” (Although I would argue it’s just a shift in what is seen as genetically “valuable.”) In the words of Robin Marantz Henig, writing at NPR’s health blog,

But as the practice [of using donated eggs] becomes more widespread, a recent study finds, women are no longer trying to hide the fact that their babies come from donor eggs by working hard to find donors who are physically or genetically similar to them. Instead, the researchers say, recipients tend to look for other qualities, such as intelligence and athletic ability, that they hope to pass on to their children.

Whether it’s shopping for blonde hair or brainiacs, the eugenic implications are still the same. These sorts of genetic preferences in choosing an egg donor are still part and parcel of the social pressure on people to produce “perfect” children genetically related to at least one parent. They are still part and parcel of a mentality which, for lack of a better word, is ultimately about “designer babies.”

The Surveillance Society: Facebook Algorithms See All

With all of these disturbing aspects of the ova donation industry in mind, the commodification of bodies, the eugenic tendencies, and the ill-explained or known health risks, the additional digital twist of the personalized Facebook ova ad is particularly disturbing. Like Big Brother or some dystopian fascist corporation from Blade Runner or Minority Report, Facebook algorithms see all — our age, gender, height, weight, ethnicity, and education — and make conclusions about the genetic desirability of our reproductive parts, our possible willingness or need to donate ova for compensation. As early as 2009, Jennifer Lahl, the president of the Center for Bioethics and Culture, was demanding that Facebook take down egg donor ads targeting young women. One blogger posted a critique of multiple aspects of the practice in 2011 called “Facebook Thinks I’m an Asian Egg Donor.”

Where to begin?? Let’s start with the copy:

“Asian Egg Donors Earn $8K”

I get that they’re trying to customize this ad somewhat to my ethnicity by putting “Asian” on there. But does this mean if I were of another race, that I would earn more or less? Does my ethnicity equate my monetary potential in this market of egg donors?

I’m assuming this company went about facebook [sic] targeting the same way a lot of us do — select from Facebook’s menu of options and then add some keywords. They probably entered some common Chinese/Japanese/whatever they think is “Asian names — and I guess my last name (which is a pretty popular Asian name) fit into the category they are targeting. However, I wonder if they considered the fact that I may be adopted, or that I may be half-Asian, or I married an Asian guy. But I guess this sort of crass targeting fits into their overall way of thinking …

Similarly, another young woman posts the following about Facebook’s targeted ova donor ads:

Amongst the weight loss, cellulite reduction, online dating, and hair removal advertisements featured in the margins of my Facebook account, there have been an increasing amount of advertisements requesting college-age egg donors. With an alluring compensation of $100,000, I couldn’t help but click on the ad. The ad took me directly to a site called “Elite Donors: Creating Happy Families,” a site that recruits egg donors for infertile couples for the purpose of In Vitro Fertilization into the female client or surrogate. The site was plastered with photos of smiling babies and mothers, all with blonde hair, blue eyes, and perfect white teeth.

Intrigued to determine whether or not I have “elite” status, I searched their criteria for an eligible donor. The standards were as follows:

  1. Height 5’9″ or taller: You may apply if you are shorter, but it helps to have family members who are 5’9″ or taller.
  2. Caucasian: Check back in the future if you are a different heritage.
  3. Very Attractive: Modeling experience is a plus, but not required.
  4. Must be 18–28 years old.
  5. Proven Intelligence: We are looking for a donor who has graduated from a top 100 four-year college.
  6. Athletic Ability: Looking for a donor who has a history of participating in athletics or dance. Playing or performing at a college or professional level is ideal.
  7. No Genetic Medical Issues: This criterion is absolute.

The writer goes on to wonder if with her history of braces, her less-than-4.0 grade point average, and her non-modeling / normal woman weight, her ability to earn might go down and down. She concludes, “I guess if these are the standards by which one measures women, we’re not worth a whole lot, are we? Be more than what someone is willing to pay for you: Protest egg donation advertisements on Facebook today.”

In the end, I agree with the writer above. It’s creepy enough that Facebook knows whether I am in the market for a new dentist or dining room table. It freaks me out infuriates me that the digital giant is also now in the business of luring young women into selling their body parts for profit. But as I wrote about recently in regard to Facebook offering to pay for female employees who want to freeze their ova, the corporate giant clearly thinks that women’s reproductive parts and wholes are part and parcel of their global purview. Facebook’s ova donation ads don’t signal a brave new world, just old exploitations packaged in slick, sophisticated, and frighteningly targeted digital packaging.

Sayantani DasGupta is an assistant clinical professor of pediatrics and a core faculty member of the Program in Narrative Medicine at Columbia University. She also teaches in the graduate program in Health Advocacy at Sarah Lawrence College, and is a prose faculty member in the summer writing conference Writing the Medical Experience at Sarah Lawrence College. Dr. DasGupta is co-author of The Demon Slayers and Other Stories: Bengali Folktales (1995), author of Her Own Medicine: A Woman's Journey from Student to Doctor (1999), and co-editor of Stories of Illness and Healing: Women Write Their Bodies (2007).

Virginia Votes Compensation for Victims of its Eugenic Sterilization Program

Posted by Jaydee Hanson, Biopolitical Times guest contributor on March 5th, 2015

Lawmakers in Virginia have agreed to pay compensation to people who were forcibly sterilized between 1927 and the early 1970s. The decision makes Virginia the second state after North Carolina – out of more than 30 with eugenic programs during the twentieth century – to provide restitution to those sterilized by their state governments.

Virginia passed its Eugenical Sterilization Act in 1924. Almost immediately, the Virginia Colony for the Epileptic and Feebleminded selected a test case that would allow other sterilizations to proceed: Carrie Buck, a 17-year-old young woman committed to the Colony by her foster parents after she gave birth to an illegitimate child conceived when she was raped by one of their relatives.

Buck’s court-appointed attorney called no witnesses to challenge the charges made about her mental health, or to question the science behind the eugenic theory espoused by so-called expert witnesses. The Amherst County Circuit Court quickly affirmed the sterilization law, as did the Virginia Supreme Court of Appeals. The Buck v. Bell case then went before the United States Supreme Court, which upheld it by a vote of 8 to 1 on May 2, 1927. In his opinion, Chief Justice Oliver Wendell Holmes, Jr. agreed with the “expert” witnesses at Buck’s original trial, asserting in a now infamous comment that “three generations of imbeciles are enough.”

A few months later, Carrie Buck became the first person in Virginia to be sterilized under the new law.  Over the next 50 years, another 8,000 persons were sterilized in six Virginia facilities. Two thirds were women, most of them poor or African American.

Some 63,000 people were subsequently sterilized in similar programs across the US, more than 20,000 in California alone. The Virginia state program is also considered to have provided a model for other nations, including Nazi Germany.

During the late 1800s and early 1900s, eugenics was widely considered “good science” and “good religion,” and many US organizations and educated elites were strong advocates of eugenic laws. Today, few of these organizations have acknowledged or repented for their past support. Most Protestant denominations participated in the religion committee of the American Eugenic Society, but to my knowledge, only the United Methodist Church has formally apologized.

Virginia’s eugenic sterilization law was revoked in 1979. It has taken 35 years for the state to decide to provide financial reparations for its victims, each of whom will receive $25,000. Sadly, many have died since 1979; it is estimated that fewer than 20 may still be alive, and the whereabouts of only 11 are known.  

The compensation effort united liberals and conservatives in the state. The conservative Christian Law Institute was joined by the liberal United Methodist Church and by my organization, the International Center for Technology Assessment, in advocating for the payments. The compensation measure was sponsored by Delegate Ben Cline, a conservative Republican from Rockbridge County, and Patrick Hope, a liberal Democrat from Arlington County who happens to be my delegate.

The bill originally would have granted $50,000 to each person sterilized under Virginia’s program, the amount provided by North Carolina. But fiscal conservatives balked, and the sponsors agreed to the lower amount in order to get the bill passed now. In the past year, two more of those sterilized by the state’s program have died, so the $400,000 appropriated will likely be more than enough for all the surviving victims of this sad chapter in Virginia’s history.

Biopolitical News of 2014

Posted by Pete Shanks, Jessica Cussins & Marcy Darnovsky on December 19th, 2014

2014 has been another busy, and decidedly mixed, year in biopolitics.

Some technical advances suggest that gene therapies and genomics-based personalized medicine may be coming closer, while a few advocates seize on the same news to speculate about making irreversible, dangerous, and socially pernicious changes to the human genome.

The need for regulation of new human biotechnologies became both more obvious and more widely accepted this year, but simultaneously there were efforts (which may succeed in the UK) to shatter long-accepted norms by allowing a form of inheritable genetic modification based on nuclear genome transfer techniques.

Other biopolitical developments also abounded, from commercial surrogacy, egg freezing parties and early-pregnancy fetal gene tests, to police DNA databases and resurgent claims about race as biology. These and yet more new biotech products and practices bring us ever closer to unprecedented personal and societal dilemmas and decisions. 

The Center for Genetics and Society (CGS) continues to monitor all of these developments, and attempts to encourage their responsible usage and effective societal governance. Many of the following issues inevitably blend into each other, but here is a brief overview of the most important biopolitical developments of 2014, roughly grouped by topic:


A number of countries grappled with how to regulate surrogacy in 2014. Ireland published draft surrogacy legislation in February; Toronto saw a boom in surrogacy despite it being only semi-legal; India took further steps to determine how to regulate its huge surrogacy market.

International surrogacy arrangements came under increasing media scrutiny, including a three-part front-page series in The New York Times (1, 2, 3). And numerous surrogacy scandals surfaced. The high-profile surrogacy broker Planet Hospital was outed for scamming would-be parents who thought they were arranging contract pregnancies in Mexico. An Australian couple left their son (Baby Gammy) who has Down syndrome with his Thai surrogate mother, taking only his twin sister back home with them. The surrogate agreed to care for the child and was able to crowd-fund the costs of his needed medical treatment.

Shockingly, it was then discovered that the babies’ father has been convicted of 22 child sex offenses in Australia. Soon after, it was revealed that a 24-year-old Japanese businessman had fathered 14 babies with different Thai surrogates, and that a different Australian father of Thai surrogate twin girls was charged with sexually abusing them. These much-publicized outrages led Thailand’s Parliament to approve a bill banning all commercial surrogacy in the country.

The news about Baby Gammy prompted others around the world (San Francisco and England) to share similar experiences, and increased awareness about the need to consider the “best interests of the child” in international surrogacy arrangements. The European Court of Human Rights, meanwhile, ruled that France must officially recognize the legal parentage of children in two families who were conceived with their fathers’ sperm and third-party eggs, and carried and delivered by surrogates in California and in Minnesota.

The Center for Genetics and Society co-organized a three-day landmark international forum on international commercial surrogacy in the Netherlands to help inform the work of the Hague Convention on Private International Law, as its member states consider moving forward toward an international agreement on international surrogacy.

CGS and Our Bodies Ourselves were awarded a two-year grant by the MacArthur Foundation to investigate human rights and social justice concerns about cross-border surrogacy and commercial egg retrieval. 

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Women’s eggs

A 23-year-old Indian woman died after an egg harvesting procedure at an IVF clinic in Lajpat Nagar, which put the spotlight on the unregulated egg industry in India. In Canada, an investigative program learned that some clinics are helping couples circumvent the law to pay egg providers. In China, an underground market in women’s eggs is booming.

Meanwhile, egg-freezing parties became a thing, first in New York (inspiring some trenchant commentary) and now across California too.

Facebook and Apple announced a $20,000 benefit for their female employees toward elective egg freezing. The move triggered a backlash, with critiques pointing to the serious and under-studied health risks to women and children, and concerns about increased workplace pressures for women to postpone childbearing.

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Assisted Reproduction

Births from IVF hit a new high in 2014. But the year also saw increased awareness of failure rates. Following on last year’s Cracked Open: Liberty, Fertility, and the Pursuit of High-Tech Babies by Miriam Zoll, this year saw the publication of The Big Lie: Motherhood, Feminism, and the Reality of the Biological Clock, and articles about murky data from the fertility industry. A study of 300,000 births found that IVF babies have a slightly greater risk of complications and a study of donor egg pregnancies revealed that those carry higher complication rates. A review of many studies of IVF’s health impacts on women and children led some European researchers to suggest we should cut back on its use; multiple medical associations also pushed for elective single embryo transfers to reduce risks.

The trend towards openness in donor conception continued, with Australia ordering clinics to release anonymous sperm donor information so children can learn about their genetic origins. The American Society for Reproductive Medicine updated its guidelines for gamete donation in the light of the growing recognition that offspring may have a right to know their genetic parents.

A Calgary fertility clinic came under fire for refusing to treat a woman who wanted to use sperm that did not match her ethnic background because of its policy against creating “rainbow families.” In October, it was revealed that a white Ohio woman was suing her sperm bank, alleging that the company mistakenly gave her vials from an African-American donor. This news prompted discussion about the role of race in donor conception, and about the lack of regulation of sperm banks.

The first baby was born in Sweden following a womb-transplant.

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Prenatal / preimplantation genetic screening 

In February, a study found that “noninvasive prenatal testing” – a procedure that analyzes fetal DNA found in women’s blood very early in pregnancy – is more accurate in detecting Down syndrome and other chromosomal disorders than a blood test and ultrasound screening. But this week, the New England Center for Investigative Reporting published a report showing the tests to be much less accurate than companies have led women and doctors to believe.

As genetic testing of embryos and fetuses increased this year, questions about ethical issues were raised in The New York Times and CNN, and parents of kids with conditions “on the list” spoke out about the risk of dehumanization. Heavy marketing of the early prenatal gene tests continued as profits rose, with the addition of microdeletions to the conditions detected, and an attempt to use the new tests in all pregnancies rather than those with specific risks. An undercover assessment of five early prenatal gene test labs found a need for better quality control. A clinical trial found that when pregnant women are educated about their choices on prenatal genetic testing, the number of tests actually drops.

Meanwhile, the US grew as a destination for couples opting to use IVF and PGD purely to choose the sex of their child (with only minimal pushback). In the UK, sex-selective abortion was made illegal with bipartisan support. UN Women produced a report showing that in India, the sharply declining child sex ratio has reached emergency proportions. In the US, dozens of right-wing bans on sex-selective abortion were introduced in a number of states and in Congress, with seven states enacting bans; a report by abortion rights supporters identified six major inaccuracies in their claims and made it clear that they are meant to undermine abortion rights.

The first baby was born after having had his whole genome sequenced in utero. Proposals for whole-genome newborn testing gained steam (and funding), despite ethical dilemmas and privacy concerns.

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3-person IVF

The FDA public meeting to discuss 3-person IVF or nuclear genome transfer (which it termed “oocyte modification”) took place February 25-26. CGS sent the committee its own letter, as well as a sign-on letter with more than 250 signatures; CGS’s Marcy Darnovsky testified at the meeting and wrote a commentary on the issues for The New York Times. The FDA’s panel of experts discussed many safety and efficacy concerns, heard from members of the public about social and ethical matters, and concluded on a cautionary note, saying that it could take decades to confirm the safety of the experimental technique.

Nonetheless, the very next day the UK government issued proposed regulations (including numerous misrepresentations and concerning proposals) that would allow researchers to use the techniques in fertility clinics. The House of Commons debated the issue on September 1, and the Parliament’s Science and Technology Committee held an evidence hearing on October 22; 75% of submissions they received warned that more evidence is needed prior to offering these techniques.

Studies published in 2014 provided increasing evidence that mitochondria do impact a person’s phenotype and that the analogy between manipulating mitochondria in an egg or embryo and “changing a battery in a camera” is highly misleading, despite claims by proponents.

In August, the US fertility clinic that 15 years ago used a precursor of the controversial techniques now in question (which they termed “cytoplasmic transfer”) finally launched an investigation into the health of 17 children, now teenagers, who were born as a result.

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Eugenics and inheritable genetic modification

The prohibition against making heritable (germline) changes to human genes came under serious threat in 2014. Inheritable human genetic modification is still explicitly illegal in dozens of countries, and nowhere is it explicitly allowed (but see “3-person IVF,” above). However, its advocates were increasingly vocal this year, perhaps encouraged by experiments that altered the genetic makeup of monkey embryos.

The Chinese company BGI continued its quest for a “better baby,” partly documented in the movie DNA Dreams. Opinions about the ethics of such a move varied (1, 2, 3) and CGS’s Marcy Darnovsky debated them with Nita Farahany at The Aspen Institute in July. In September, Israeli historian Yuval Noah Harari made a compelling case that “body upgrades” for the rich would contribute to rising inequality.

Eugenics is not merely a threat, nor is its history entirely in the past. North Carolina finally compensated its victims of eugenic sterilizations, becoming the first US state to do so. In California, Gov. Jerry Brown signed SB 1135 into law, providing protection against the kind of sterilization abuses in California prisons that were revealed last year by the prison rights group Justice Now and an investigation by the Center for Investigative Reporting.

Meanwhile, Lee Silver launched a company called GenePeeks that uses the DNA of sperm donors and recipients to create "virtual babies" with desirable traits.

Lord Robert Winston warned us all that breakthroughs in IVF could prompt parents to demand particular traits for their babies. One father asked, “Will my disabled daughter have a place in this genetic wonderland?”

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Genetic testing

Almost all former direct-to-consumer genetic testing companies have closed up shop, and public trust in personalized medicine was threatened  this year by 23andMe’s failure to comply with FDA standards, as well as the difference between the company’s rhetoric of personal control and its actual business plan.

Its ancestry testing also came under criticism after stories emerged about revelations of previously unknown sibling relationships that wound up tearing families apart. However, 23andMe is now selling its tests (with health information) in Canada and the UK, and there are ways of accessing the data in the US if you really want to.

Additionally, the Federal Trade Commission charged GeneLink, which served 30,000 customers, for making claims not based on science and for failing to protect consumer information. Concrete evidence emerged about errors in test interpretation by a DTC company causing potential harm.

Efforts in the UK to link all medical records to whole-sequenced genomes provoked some pushback. Privacy concerns about DNA testing attracted attention, as did concerns about storage, access, security, difficult information, family secrets, and usage.

The long-awaited $1,000 genome was announced by Illumina in February with help from the US government, though that price tag ignored substantial hidden costs. Craig Venter formed another company, Human Longevity Inc., to exploit this technology, with the goal of sequencing half a million human genomes within five years.

Myriad Genetics continues to wage legal battles over its BRCA gene patents in the US; surprisingly, Australia chose to uphold Myriad’s patents in September. Meanwhile, it was discovered that mutations in a gene called PALB2 also greatly increase the risk of breast cancer. Breast cancer patient advocates warned that genetic testing of all women would not provide a solution to the breast cancer epidemic.

New studies suggest that doctors need to be more cautious when they release genetic information to patients, and the American College of Medical Genetics and Genomics now claims that patients should be allowed to “opt out” of learning how their DNA might increase their risk of disease.

Some people are avoiding genetic testing because of major omissions in protection offered by GINA — life, disability and long-term care insurance — that are especially important to people who may have serious inherited diseases. The Council for Responsible Genetics released a report on “Genetic Privacy and Non-Forensic Biobanks” outlining the need for regulatory reform.

Efforts to ease data sharing of genomic information ramped up around the world. Google set up a cloud to allow people to import, process, store and search DNA data, and joined forces with The Global Alliance; Kaiser Permanente now has a genetic database with information from over 210,000 of its members.

There is increasing evidence of the importance of epigenetics, although scholars warned in Nature that we should not allow this research to place undue blame on mothers.

Examples of genetic determinism abounded, from Uzbekistan testing children as young as ten years old to determine their athletic potential, to former New York Times reporter Nicholas Wade arguing in a new book that genetic variation between races could underlie global economic, political and social differences.

The book elicited considerable criticism from geneticists, social scientists and public interest advocates; CGS sponsored a Talking Biopolitics conversation assessing the reaction. There were also some scientific studies that countered this narrative: smart genes are proving elusive (despite the ardent search), and there doesn’t seem to be a “longevity gene” either. In most cases, it turns out that the role of DNA in our lives is more complex and subtle than we expected, and that scientific racism is just bad science.

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Synthetic biology

A major focus of technological enthusiasm was synthetic biology. Most public attention went to powerful new gene editing technologies, notably CRISPR, but scientists also produced synthetic chromosomes and artificial nucleotides.

One of the most potentially consequential technologies being seriously discussed is the “gene drive,” which involves altering genes and then deliberately spreading the new version through the entire population of a species. Unusually, scientists published a technical paper about it and simultaneously another about the need to regulate this technology, accompanied by an informative blog post.

Regulation of synthetic biology in general was much in the air. The United Nation’s Convention on Biological Diversity called for it, and an event  at Arizona State University raised the issue, but the discussion has barely started.

Other applications being discussed include synthetic food; modifying pigs to make organs for transplant into humans; the “de-extinction” of mammoths and other species (which provoked some notable objections); and even some absurd, misogynistic fantasies.

The US Department of Defense formalized its interest in synthetic biology, and money seems to be flowing in. Patent disputes are heading for the courts, companies are jockeying for position, and the future remains uncertain.

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DNA forensics

An FBI audit of a national DNA database found nearly 170 profiles that probably contain errors, and New York authorities turned up mistakes in their state's DNA database. Meanwhile, DNA contamination was shown once again to be a sizeable problem.

Privacy advocates warned that warrantless searches of a person’s DNA, especially for misdemeanor arrests, is a slippery slope. “DNA sweeps” were shown to be particularly troubling, as was the rise in familial DNA searches.

In March, a federal appeals court upheld California's law requiring people arrested for felonies — though not necessarily convicted or even charged — to submit samples of their DNA to police. But in December, an appeals court decided unanimously that the practice violates the state constitution.

However, the FBI is preparing to accelerate the collection of DNA profiles for the government's massive new biometric identification database, and is hoping to use a machine that can scan your DNA in just 90 minutes. Some argue that we are facing a backdoor move into total population surveillance by both governments and companies.

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Stem cells and gene therapy

The biggest story of the year turned out to be a bust: so-called STAP cells were presented in January as a paradigm changer — an easily obtainable alternative to embryonic stem cells (ESCs) and induced pluripotent stem cells (iPSCs). By July, however, Nature had retracted the relevant papers and almost everyone has now given up on the process.

Two additional research teams produced ESCs by nuclear transfer or cloning (NT-ESCs) after the first success in 2013, reinforcing concerns about the risks to women who would provide the needed eggs and about inadequate laws against human reproductive cloning. To the researchers’ surprise, however, and despite initial reports, iPSCs turned out on analysis to be just as good as NT-ESCs, though studies will continue on both methods.

Stem cells are moving into clinical trials, mostly with adult stem cells but also the first iPSC-based trial. However, premature commercialization of the technology continues, and drew increasing criticism (1234); professional athletes are frequently lured to dubious clinics.

The California Institute for Regenerative Medicine (CIRM) survived a rocky year. A conflict-of-interest scandal involving its recently departed President, Alan Trounson, brought unwelcome publicity. The 10th anniversary of its founding prompted a look back that was compelled to note that no cures have reached the clinic, or even come close. But at year’s end the new management launched a new effort to produce treatments, in what could be CIRM’s last gasp before its public money runs out.

Even without the technical advances promised by synthetic biology (see above), the historically troubled field of gene therapy made significant progress in 2014. It was announced that eight of nine “bubble boys” had survived for up to 43 months (so far) after treatment. Advanced Cell Technology’s stem-cell therapy for eye disease seems to be at least safe and possibly effective; the company has just changed its name to Ocata Therapeutics, Inc.

The ESC-based spinal cord treatment program that Geron let go for business reasons has been revived. Asterias, a subsidiary of BioTime, took over the project and received a $14.3-million grant from CIRM to proceed. The company also says it is working on a potential ESC-based treatment for lung cancer.

In Germany, the first gene therapy drug has been announced, with a record price tag of €1.1 million ($1.4 million). But it won’t go on sale until 2015.

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Previously on Biopolitical Times:

Prenatal Tests: Oversold and Misunderstood

Posted by George Estreich, Biopolitical Times guest contributor on December 16th, 2014

Lincoln Samuel tested positive for Edwards syndrome, but was born perfectly healthy

Untitled Document On Sunday of this week, the Boston Globe published an article that I've been waiting to see for months. It's Beth Daley's investigative report on noninvasive prenatal testing, and I'm hoping it will both create a larger public conversation, and shift the terms of the conversation so far.

As many of you know, NIPT is a new technology that promises to detect Down syndrome and other chromosomal conditions based on a maternal blood draw alone. These tests are sold as "99% accurate" something I believed for a long time, and that some health professionals seem to believe but as genetic counselor Katie Stoll has written, the actual test performance is nowhere near as good. NIPT is not diagnostic; it is a screening test, and a "positive" result only means that a diagnostic procedure, like amniocentesis or CVS, will be required to confirm fetal status. 

I believe that it is not enough to consider reproductive technologies in the abstract. They cannot be contemplated only in a statistical or bioethical vacuum: we need fact-based stories to perceive human consequences on the ground. Beth's article accomplishes this by focusing on the cost of false positives and false negatives in real people. She also delves into the facts about LDTs, or laboratory-developed tests, which are currently unregulated by the FDA. Because her article has already sparked pieces at The New York Times, NBC News, and elsewhere, I have hopes that a new conversation is beginning.

I very much hope that disability will be a part of that conversation. In an online chat that accompanied the article launch, the main conversation focused on the accuracy of marketing claims and the consequences for women. These are vital and relevant issues, but they aren't the only ones. We also need to question what we test for, and why – and the way "objective" tests project human values into the world. Ultimately, I think NIPT needs to be seen in the context of a rapidly increasing power to read and alter our genetic code.

One key part of Beth's report is that it shifts the ground of discussion. Though questions about NIPT often get subsumed under discussions of abortion an idea encouraged by the Globe's headline Beth's article makes clear that other questions, from corporate responsibility to loopholes in regulation to gaps in practitioner understanding, are also at issue. 

Untitled Docume

George Estreich received his M.F.A. in poetry from Cornell University. His first book, a collection of poems entitled Textbook Illustrations of the Human Body, won the Gorsline Prize from Cloudbank Books. His memoir about raising a daughter with Down syndrome, The Shape of the Eye, was published in SMU Press’ Medical Humanities Series. Praised by Abraham Verghese as “a poignant, beautifully written, and intensely moving memoir,” The Shape of the Eye was awarded the 2012 Oregon Book Award in Creative Nonfiction. Estreich lives in Oregon with his family.

 Previously on Biopolitical Times:

Breaking from our Eugenic Past

Posted by Jessica Cussins on November 13th, 2014

In an historic recognition of the horrors of the United States’ state-sponsored eugenics programs during the twentieth century, North Carolina has now begun sending compensation payments to some of its 7,000 sterilization victims. Unfortunately, as NPR has covered, the new policy will lose some people through bureaucratic cracks.

Nonetheless, the importance of this moment for those who have been fighting for recognition of this abuse of reproductive justice and human rights cannot be overstated. It has been a long struggle to get to this point.

Twentieth-century eugenics in the US is often systematically ignored. This year, some important efforts have shed light on how it was that many of the most respected members of society promoted these (profoundly discriminatory) practices. New York University’s new exhibit, Haunted Files: The Eugenics Record Office, which will run until March, is an important one.

The recognition of this history is timely because advances in genetic and reproductive technologies will put increasingly more people in the position of having to wrestle with questions about the kind of child they want – and don’t want – to bring into the world. For example, the start-up company GenePeeks brings us what enthusiasts call “virtual eugenics” by encouraging “best matches” of gametes.

Forbes ran an article over the weekend called “Could Genomics Revive The Eugenics Movement?” Its short answer was, yes, and given our history, we should be really concerned.

Of course, some people would rather ignore these connections. In a twist of particularly cruel irony, Jon Entine published a piece in The Huffington Post called “Let's (Cautiously) Celebrate the `New Eugenics’” on the exact same day that the eugenic victims of North Carolina were finally beginning to be compensated for their loss.

Entine’s argument is along the lines that individual choices absolve us of eugenic implications. But one only need look at the 163 million missing girls in Asia or the over 90% termination rate following a prenatal diagnosis of Down syndrome, to see that this is naïve. Choices about families can never be strictly individual; we are all subject to social and political realities.

Now is not the time to celebrate eugenics (cautiously or otherwise), but to finally learn about the toll that our pseudoscientific eugenic laws had on people’s lives and on society, so that we are not endlessly condemned to repetition.

Previously on Biopolitical Times:

FIXED: The Science/Fiction of Human Enhancement

Posted by Jonathan Chernoguz on November 12th, 2014

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FIXED: The Science/Fiction of Human Enhancement, the documentary produced and directed by Regan Brashear, has recently shifted to the center of a variety of discussions and symposia on normalcy and disability. 

The University of Rochester is hosting its first-ever Disability Studies Cluster Symposium this Friday, November 14, which has been crafted and organized around the film.  The symposium is titled “Complicating Normalcy: Disability, Technology, and Society in the Twenty-First Century.” 

The film will also be screened on opening night at the Other Film Festival, the largest disability film festival in Australia, on December 3.  Additionally, the United Nations has just licensed the film for its work on the Convention for Rights of People with Disabilities.

FIXED questions commonly held beliefs about disability and normalcy by exploring technologies that promise to change our bodies and mind forever. The film follows five people with disabilities and explores the implications new human enhancing technologies have on them. 

Clark Miller, Associate Director of the Consortium for Science, Policy and Outcomes at ASU, raved about its interdisciplinary importance for students and faculty,

This film is extremely important and will be very valuable for faculty from dozens of different disciplines from the biological sciences to disability studies to the humanities and social sciences, precisely because it confronts one of the central issues of our time: how to make sense of variations among human beings and how to make sense of our capacity for radical technological innovation that will change our entire futures.

Brashear has been in touch with CGS since the beginning of production, and the documentary features CGS Executive Director Marcy Darnovsky sharing her concern about the potential misuses of new and emerging human biotechnologies. 

FIXED was screened at Future Past: Disability, Eugenics, and Brave New Worlds in 2013, a public symposium that CGS co-organized with the Paul K. Longmore Institute on Disability, Facing History and Ourselves, and Living Archives on Eugenics in Western Canada. This symposium focused on the historical and ongoing implications of eugenic ideologies and practices for people with disabilities, and FIXED synthesized many topics of the day, while providing new food for thought. 

Also in 2013, CGS hosted a Talking Biopolitics conversation with Regan Brashear, in which she discussed the reception of the film.

FIXED is a great film for promoting discussion about the profound implications of new technologies on the lives of people with – and without – disabilities. It's wonderful to see it getting so much well-deserved attention. To learn more about the film, watch the trailer, or buy a copy, see more here.

Previously on Biopolitical Times:

Why We Should Teach the History of Eugenics

Posted by Jonathan Chernoguz on October 28th, 2014

Source: Miles Cole

This month, New York University and University College London have both launched initiatives to focus on the history of eugenics. Students and faculty at UCL hosted an event to encourage their institution to face up to its complicity in constructing unjust racial hierarchy through its support of Francis Galton’s research on eugenics. At NYU, a new exhibit, “Haunted Files: The Eugenics Record Office,” opened at the university’s Asian/Pacific/American Institute.   

At both universities, these initiatives acknowledge that advances in modern genetic technologies make education about the history of eugenics increasingly important.   

Galton’s legacy at UCL is extensive. It began 110 years ago this month, when he contributed funds to establish a position there for a “research fellow” in “National Eugenics,” which he defined as “the study of the agencies under social control that may improve or impair the racial qualities of future generations either physically or mentally.”   

The NYU exhibit brings to life the physical offices and paper archives of Cold Spring Harbor Laboratory on Long Island, the center of the eugenics movement in the United States between 1910 and 1939. According to The New York Times, the exhibit’s curators relied heavily on Cold Spring Harbor’s online Image Archive on the American Eugenics Movement:

David Micklos, executive director of the laboratory’s DNA Learning Center, applied for a government grant to scan files from the office and display them in an online archive, which opened in 2000. “It was a hidden part of American scientific history — people didn’t like to talk about it,” said Mr. Micklos, who added that he was inspired by ethical concerns surrounding the Human Genome Project.

Other educational projects have also aimed to bring to light the history of twentieth-century eugenics. An ambitious online effort called Living Archives on Eugenics in Western Canada, “directly engages communities in developing accessible resources to bring to light the history of eugenics in Canada.” Two public events have been co-organized by the Center for Genetics and Society – Future Past: Disability, Eugenics, and Brave New Worlds in 2013 and Eugenics in California: A Legacy of the Past? in 2012. The motivations behind these efforts included concerns about misuses of new and emerging genetic technologies.

Many educational institutions still avoid discussing the history of eugenics, and many are reluctant to confront their own complicity in the abuses it facilitated. But studying eugenics in the twentieth century is important not just as a matter of learning history, but as part of what we need to know in order to thoughtfully consider the responsible uses of genetic technologies today. 

An End to Sterilization Abuses in California Prisons

Posted by Jessica Cussins on September 26th, 2014

Untitled Document

California Governor Jerry Brown signed SB 1135 into law Thursday night, banning unnecessary coercive sterilizations in the state's prisons - a happy victory for advocates of reproductive and criminal justice as well as of human and women’s rights.

The bill’s sponsor, Sen. Hannah-Beth Jackson (D), identified the need for the change:

Pressuring a vulnerable population into making permanent reproductive choices without informed consent is unacceptable, and violates our most basic human rights.

The bill was inspired by the efforts of Justice Now, an advocacy organization working to challenge the prison industrial complex, which originally uncovered evidence of these abuses and started a petition last year to demand that they end, as well as by the important journalism of Corey Johnson of the Center for Investigative Reporting, who documented evidence of 148 illegal sterilizations taking place in California prisons between 2006 and 2010.

California bears the shameful history of having sterilized more people under 20th century eugenic laws than any other state. Over 20,000 people lost their reproductive rights because the state considered them “unfit” to reproduce. These laws disproportionately impacted communities of color, people with disabilities, and people living in poverty. It is critical to know this history so that problematic resurgences of these same ideologies do not creep back under new auspices. SB 1135 is an important victory in the fight for the remembrance of our eugenic history and its ongoing implications.

We are absolutely thrilled to see this policy become law. Thank you, Jerry Brown!

Previously on Biopolitical Times:

"We're All One of Troy's Babies": A Celebration of Troy Duster

Posted by Victoria Massie, Biopolitical Times guest contributor on August 21st, 2014

On Friday, August 15th, I was one among a multitude of people finding a seat in Booth Auditorium at UC Berkeley Law School for Celebrating Troy Duster. But the event turned out to be as much a family reunion as a celebration, a testament to the work done by organizers Osagie Obasogie and Duana Fullwiley.

For the sake of formalities, there was an agenda, and panels throughout the day pointed to themes that have been central to Troy’s work: the “slippery slopes” of political inclusion and racial science around understanding health disparities; the technique of engaging scientists on race in genetic research; the work of the sociologist in policing, forensics, and behavioral science; and lastly “connecting the dots” between Troy’s work in the academy and his commitment to the public and community engagement. But with each panelist’s approach to the podium, it became increasingly undeniable that every reference to the “Dusterian”—after all, Ruha Benjamin pointed out, we have “Bourdieuian”—analytical method of recontextualizing in context, of noting the pre-frame, was inextricably tied to the love and care infused and cultivated in each of their relationships with the man of the day.

I first met Troy Duster in Rochester, NY in the summer of 2009. I had just finished my sophomore year of college, and was beginning to research the various social ties entangled within the genetic ancestry testing results my dad had sent me eight months earlier. Make no mistake, I found my father’s test results to be a godsend. Although I came to the University of Rochester with the sole purpose of pursuing a molecular genetics major, I quickly found my passion for the double helix in jeopardy during my first semester when I was introduced to anthropology, and specifically the lecture on how race is socially constructed. It was an idea that was new and yet so familiar as I found myself finally able to put my lived experiences into words. I came to learn that all the times I found myself being denied the full potential of my identity as a black woman had less to do with my inadequacies of being able to fit into a box and more to do with the conditions that make such a box possible. Intoxicated by the first taste of this form of self-aware liberation, I yelled to my friends as we met for lunch “Race doesn’t exist!” Full with hunger and anxious to beat the noon rush at our favorite dining hall, they began to resist my statement, only to find the refusal to surrender to my adamant assertion futile in reaching our ultimate goal: eating.

Over time, I would learn that neither my friends nor I had managed to get race right. When my father surprised me with an email containing the results of an ancestry test he had taken for himself, I found myself confronted with the context I had left out at lunch. Specifically, I began recognizing that saying race does not exist does not change the way race comes to matter. In the attempt to piece together the silences inherited by those whose ancestors’ personhood was considered property, my father extended to me information of a home we weren’t supposed to know. But even this new form of knowing was one I met with skepticism. It bridged together my love for DNA and my interests in race, but in ways that provided more questions than answers, so much so that I could spend a summer researching them in 2009. And having been lucky enough to have had an advisor who did her Ph.D. at NYU, I was immediately pointed to Troy’s work.

Five years later, having just finished my qualifying exam in the anthropology department at Berkeley, and preparing for my upcoming year and a half of fieldwork for the same project, I am still indebted to my first meeting with Troy’s work in Rochester. And as I sat in Booth Auditorium, listening to the countless scholars who Troy influenced and who have also influenced me, I couldn’t help but be in awe and at home at the same time. People from across the country came together to celebrate the many ways Troy seemed to simultaneously embody and exceed the title of scholar, activist, teacher and friend, but with a swagger-infused humility not easily mirrored but always inspiring us with the everyday challenge to try.


Moving on from Nicholas Wade to Continuing Concerns about Scientific Racism

Posted by Pete Shanks on August 14th, 2014

Four faces of varying color

The sad saga of Nicholas Wade, former international reporter turned laughing stock, seems to be staggering toward its inevitable end. However, the issues that he — unintentionally — highlighted remain, and badly need to be addressed.

Wade's fatuous book, A Troublesome Inheritance: Genes, Race and Human History (see 1, 2), has drawn what surely must be the definitive response from, at last count, 143 population geneticists. Essentially (to quote Marshall McLuhan, as scripted by Woody Allen) they each say:

You know nothing of my work.

The scientists published a short letter in The New York Times Book Review on August 8, commending the July 10th review of Wade's book by David Dobbs and thanking Dobbs "for his description of Wade's misappropriation of research from our field to support arguments about differences among human societies." The letter notes that:

Wade juxtaposes an incomplete and inaccurate account of our research on human genetic differences with speculation that recent natural selection has led to worldwide differences in I.Q. test results, political institutions and economic development. We reject Wade's implication that our findings substantiate his guesswork. They do not.

We are in full agreement that there is no support from the field of population genetics for Wade's conjectures.

The letter was noticed in various corners of the press, including the Los Angeles Times and the [London] Independent, as well as the news pages of Nature and Science. Some of the readers' comments in Science are a source of grim humor if you are so inclined.

Wade is not backing down. In a response [pdf, here or here], he accuses his critics of being "driven by politics, not science" and claims to have "seen no basis" for the "repeated assertions that the book is scientifically inaccurate."

This is rubbish. Wade did seem to have a poor connection when discussing the book with Agustin Fuentes on May 5; perhaps he failed to hear everything that was said. Perhaps he did not read the reviews by credentialed scientists from several disciplines with the care and attention they deserve (for instance, 1, 2, 3, 4, 5); perhaps, like a child afraid of the wicked witch, he closed his eyes and skipped over the ugly parts. Or perhaps he is so convinced of his own unique insight that mere facts bounce off the carapace that protects his prejudices.

Whatever the reason, Wade (who still insists that he opposes racism on principle) seems desperate to engage with his critics. But they are right to refuse: He claims to correct them in their own field, and he is wrong. There is no further debate to be had with one who will not learn.

There is, however, a continuing and even growing need to have a series of related discussions, which should involve both academics of many specialities and the public in general, at all levels of formal and informal education. Population geneticists and anthropologists may be quite clear about the fallacies that surrounded the subjects of race and genetics, but it is equally obvious that some psychologists and physicists are not. Some Americans may blithely insist that we live in a post-racial society; most of us know better.

Sticking strictly to fields directly connected with genetics, racial fallacies and simplistic interpretations of inadequate data have been — are being — used in attempts to sell race-based medicine, for instance, as well as relatively trivial ancestry scams. Race-based forensic applications of technology, biased databases, even advocacy of predictive sentencing, need to be addressed, critiqued, corrected and discarded. The social construction of race needs to be addressed at social, cultural and political levels.

Cherry-picking from scientific papers to misrepresent their conclusions in order to bolster prejudice must not be allowed to continue. That is the big lesson to be drawn from Wade's experience.

Personalized medicine may, eventually, have an important role to play in society. If and when it does, the differential distribution of alleles between populations is not really going to be vital: what will matter is that a given patient has a given allele, and whether it is rare or common in a particular geographic or cultural milieu will largely be irrelevant (except for effects of the external environment).

But it's going to take both a lot of research and a lot of discussion to reach that point. If Wade's hasty grab for the spotlight helped to make that clear, then something useful came of it. Perhaps it can yet be the start of an important discussion.

Previously on Biopolitical Times:

North Carolina and Genetics: From Sterilization to Research Subjects

Posted by Victoria Massie, Biopolitical Times guest contributor on August 7th, 2014

Elaine Riddick is one of North Carolina's sterilization survivors

Untitled Document

Willis Lynch says the nurse asked him to sing her a song as she slipped the mask over his face. It was the serenade of lifetime, but it would be years before Lynch learned that this song slipped him into cutting the ties that could bind him to a future generation of his making.

In 1947, at the age of 14, Lynch was one of an estimated 76,000 people who were forcibly sterilized through the state of North Carolina’s selective sterilization program, which ran from 1929 to 1974. It was a program that, according to pamphlets, aimed to protect the broader state’s citizenry from the burdens imposed by those it identified as “moron,” “feebleminded,” “(mental) defectives,” and/or “a person of little intelligence.”

These categories allowed the state to codify and target the sterilization of those who did not fit its profile of an ideal citizen: the poor, people of color, people with disabilities, and even victims of rape who became pregnant. The assumption was that all citizens had a duty to protect the parenting of “a healthy, normal baby,” and that those targeted for sterilization should voluntarily give up their reproductive rights.

In reality, people often found themselves forced to choose between being released from state institutions and receiving welfare benefits, or losing their right and their ability to have children. Under the sterilization program, voluntary surrender was a cover for an insidious ultimatum. In other words, North Carolina – like more than 30 other states with laws allowing eugenic sterilization – found it more efficient to deny the possibility of future generations to certain people, rather than attend to the structural, socioeconomic and political issues that make poverty, racism and rape not only possible but normal.

North Carolina’s history of sterilization has come to the surface this summer as the state began accepting claims from those who were involuntarily sterilized. This step toward offering compensation to victims and their families made North Carolina the first state in the country to do so.

And yet in spite of this major symbolic victory, Lynch’s all-too familiar song lingers, harmonized now to the tune of Kannapolis citizenry turned into human research subjects in the name of bio-banking.

“Sequenced in the U.S.A.”

Located on the outskirts of Charlotte, Kannapolis was a town once known as the largest towel manufacturer in the world. Most of those who lived in Kannapolis depended on Cannon Mill as the linchpin of the local economy. But a little over a decade ago, the town experienced the largest single layoff in the state’s history as the mill’s doors were permanently closed.

Since then, Kannapolis has become a hub for biotech research and innovation, in part due to a billion-dollar investment by Los Angeles real estate magnate and businessman David H. Murdock. According to a revealing article in The Pacific Standard called “Sequenced in the U.S.A.: A Desperate Town Hands Over Its DNA,” Murcock “stepped in to transform Kannapolis into a $1 billion mecca for biotechnology and life sciences research,” building a 350-acre research complex on the site of the demolished Cannon Mills.

The town’s former blue-collar laborers aren’t the kind of people who will find jobs at Murdoch’s high-tech institute. But they now find themselves bombarded with “opportunities” to provide urine and blood samples for its research efforts, including one called the MURDOCK Study.  At schools, churches, and health care facilities, there is a very high likelihood that recruiters will be waiting under a tent to collect local biological material so that researchers can connect family histories to genetic sequences in the pursuit of personalized medicine.

But despite the fact that the local raw material may help biotech ventures make billions of dollars, guess how participants are compensated: a $10 gift card to WalMart.

The argument can be made that participants are at least getting some form of compensation for their contributions to the study, and some told the Pacific Standard that they are taking part in the study “for the good of their grandchildren and future generations.” But questions remain.

Can one consider consent to be informed when Kannapolites are being invited to relinquish their biological material for use in a future that has yet to come and may never come to pass, that cannot be predicted, and that is only as speculative as the venture capital supporting the biotech industry? Shouldn’t we be given pause by the legacy of Henrietta Lacks, an African American woman whose cells were taken without her consent to produce the first known human immortal cell line for medical research?

According to international consensus, research subjects are to be expected to know the “nature, duration, and purpose” of experiments in which they take part. The MURDOCK study has no temporal end in sight, and the nature of the projected research has yet to be made clear. The assumed public good may turn out to be one that much of the public cannot share.

Despite assurances by researchers that participants can withdraw from the study at any time, once blood and urine is taken, the material and information is out of their control. Participants are informed that they can make no claims to the benefits of the commercial products that may be made possible by the biological materials and information they provide.

The state of North Carolina once promoted eugenic sterilization as a technique to protect the public. Today, it hosts a private-public biotech industry effort to build lucrative biobank-based ventures. Are there similarities to which we should be paying attention?


Victoria Massie is currently a graduate student at UC Berkeley, pursuing a Ph.D. in Sociocultural Anthropology with a designated emphasis in Science & Technology Studies. Her research examines the transnational circulation of genetic ancestry testing information by African-Americans, particularly between (but not exclusive to) the United States, Cameroon, and Sierra Leone. She is also a poet, and a summer intern at the Center for Genetics and Society.

California Set to Prohibit Sterilization of Prisoners

Posted by Jonathan Chernoguz on July 24th, 2014

prison bars

Last month, the California Senate unanimously approved bill 1135, which bans the sterilization of inmates as a form of birth control. The bill will soon be put before the Assembly and could become state law this year. If it passes and is signed by the Governor, the sterilization of prison inmates will be permitted only in cases of life threatening emergencies or when medically necessary.

Evidence of unauthorized sterilizations in California prisons emerged through the persistent efforts of Justice Now and an extensive investigation by Corey Johnson of the Center for Investigative Reporting. State Senator Hannah-Beth Jackson, vice-chair of the California Legislative Women’s Caucus, spearheaded the request for a state audit and authored SB 1135.

According to the California State Auditor, more than 39 out of the 144 bilateral tubal ligations performed on inmates from fiscal years 2005-06 to 2012-13 were done without lawful consent. Even more alarming, there is no evidence that the inmates’ physician signed the required consent form for 27 of the sterilization procedures.

The audit additionally says that “the true number of cases in which Corrections or the Receiver’s Office did not ensure that consent was lawfully obtained prior to sterilization may be higher.” In other words, there could be even more victims of sterilizations who are unaccounted for because they are still unaware that the procedure was performed.  

With the SB 1135 approved unanimously and on its way to the Assembly, it’s easy to forget about California's murky history with sterilizations. During the twentieth century, dozens of U.S. states had laws permitting explicitly eugenic sterilization. Some 20,000 procedures were performed between 1909 and 1963 in California, the highest number in any state.

This history was raised in the legislature in 2003. Governor Gray Davis issued an apology, and a state resolution was passed that

urges every citizen of the state to become familiar with the history of the eugenics movement, in the hope that a more educated and tolerant populace will reject any similar abhorrent pseudoscientific movement should it arise in the future.

Yet the resolution presents no outline for making this idealistic “urging” a reality.

When I learned of the continuing sterilizations in California, it seemed to me that the 2003 apology and resolution were empty. As an effort to truly help prevent “any similar abhorrent pseudoscientific movement to arise,” I worked on a petition to incorporate the history of the eugenics movement into California schools’ curricula. The approval of Senate Bill 1135 would also help challenge the re-emergence of eugenic ideologies, as well as prevent abuses in California’s prisons.

Previously on Biopolitical Times:

The Perfect 46: A “Science Factual” Film about our Near Future

Posted by Jessica Cussins on July 10th, 2014

Sitting down to watch the science fiction film The Perfect 46, I had the strange sensation of walking through a hall of mirrors. Intriguingly meta-conscious, and perceptibly close to reality, this film highlights the world of direct-to-consumer (DTC) genetics and makes it clear that this technology, now at our real-world doorsteps, could drastically shape our very near future.

The story centers on the aptly named company ThePerfect46, which starts off with a seemingly innocuous mission. Taking advantage of the fact that most Californians have had their genomes sequenced by this undefined point in time, it simply offers to analyze a couple’s genomes alongside each other to determine their ability to have a disease-free child.

But founder and CEO Jesse Darden isn’t content to stop there. In a move that sparks internal controversy and leads to one staff person abandoning the project, he rolls out version 2.0, which allows the company to search through giant databases and match random people together based solely on their ability to create genetically “ideal” children. The film cuts back and forth between a tense situation unfolding for Darden, flashbacks of his life, and a documentary film made about his rise and fall.

While The Perfect 46 is a fictional film, it is being promoted by a real-life website purporting to actually sell ThePerfect46 product (kudos for the smart marketing ploy!).

Darden, played quite well by Whit Hertford, is the star of The Perfect 46. He is a Steve Jobs-esque anti-hero: the disliked techie genius, the man behind the company that aims to improve humanity but ends up causing great harm. Darden comes across as “a tortured genius… a character that can be lauded and loathed in equal measure.” He is romanticized as smart and entrepreneurial, but his considerable personal and inter-personal flaws are never out of view.

Perhaps by now both Darden and ThePerfect46 sound strangely familiar. If so, it’s probably because the similarities to companies and products that actually exist right now are jarring. This is a kind of science fiction that is only just barely fictional.

In fact, writer and director Brett Ryan Bonowicz calls The Perfect 46science factual.” He invited a number of researchers to be consultants on the film and strove to show “a respect for science.” The scientific community has applauded his use of “authentic science” and raved about how the film is “a refreshing change of pace” because it doesn’t dissolve into a dystopian nightmare. Here Bonowicz elaborates on why he pursued this approach,

By making the film as factually accurate as possible, the conversation that the film creates should, I think, spark something that a more futuristic, fantastic treatment perhaps cannot. The topics we cover in the film genetics, eugenics, the moral and ethical implications of a consumer genetics service, and the role of government vs. a DTC model are discussions that deserve to be out in the public. This is a film of the moment.

In fact, you may find reality to be even more bizarre than this particular fiction. Just last year, the infamous DTC genetics company 23andMe received a patent for "gamete donor selection based on genetic calculations." The premise of the technology was that it could allow people to choose a sperm or egg provider based on probabilities of having a child with the kinds of characteristics they desired including “height, eye color, gender, personality characteristics and risk of developing certain types of cancer.” In response to backlash from the media about its “designer baby patent” with drop-down menus of characteristics, 23andMe assured everyone that it no longer had any plans to pursue the full range of possibilities described.

Another company, GenePeeks, has remained undaunted. GenePeeks launched just months ago, founded by molecular biologist Lee Silver, who writes broadly about how positive eugenics is both laudable and inevitable, and Anne Morriss, the mother of a sperm donor-conceived son who inherited the rare recessive disease MCADD.

GenePeeks’ “Matchright” is remarkably similar to the product offered by ThePerfect46. For $1995, “GenePeeks digitally combines your DNA and the DNA of potential donor matches to create a preview of thousands of personal genomes that your child could inherit, focusing on a panel of genes involved in childhood health and disease.” Based on this information, you can then preview your personal “catalog” of donors and further weed them out based on your preference for such characteristics as height, eye color, hair color, education level, and ethnicity.

What GenePeeks hasn’t marketed yet is its ability to test for much more than “health and disease.” But the patent it was awarded in January explicitly lists many non-medical traits: aggression, weight, breast size/shape, drinking behavior, drug abuse, eating behavior, ejaculation function, emotional affect, eye color/shape, hair color, height, learning/memory, mating patterns, sex, skin color/texture, and social intelligence, among others. It is thought to be possible to screen for just some of these traits, but all are covered by the patent.

Furthermore, GenePeeks doesn’t intend to limit its availability to sperm banks. It plans to expand soon and become available for “anyone planning a pregnancy in advance.” Of course, there is at least one fundamental flaw in the methodology of all these schemes: two people can have an infinite number of children with a full range of characteristics. Choosing a “preferred” donor can’t possibly absolve all risk.

In fact [spoiler alert], in The Perfect 46, a bug in the company’s algorithm results in the birth of 24 children with a severe genetic disorder. The horrific mistake causes the company to close its doors and forces Darden into solitude, where he continues to develop his work and reflect on what went wrong. What is perhaps most remarkable about the scenario is that no one is ever found to be at fault, even when some of the children die, and at least one suicide results. While Darden is depicted as a broken man, devastated by the fault in a system he designed, he is relatively unmoved by personal stories, including one about a loving couple that divorced after hearing they were “incompatible.” In his mind, “Just because I created something doesn’t mean I’m responsible for how people use it.”

Is this the kind of language that will be used around technologies governing life and death in our market-driven culture? The film probes many such important questions. How quickly does the right to know become the responsibility, or even the requirement, to know? What will people do with this information? And what happens, and who is accountable, when it is wrong?

(If 23andMe is anything to go by, some information will be wrong.)

Furthermore, can changing the kinds of people who are born really be considered “preventative medicine?” When recommendations about who is “fit” to be born are made by a commercial entity, does the absence of state involvement make the actions less eugenic? Is “perfection” what we ought to strive for? If so, what do we make of the founder – who is anxious, anti-social, awkward, not good-looking, and in the end, in “an irony that was lost on no one,” infertile?

The desire to know and control more, even when the meaning of the knowledge and our ability to control it is imperfect, can be powerful. But while it makes marketing sense for drug and genetic testing companies to pathologize more and more conditions, it probably doesn’t make sense for us. As these technologies become increasingly present in our lives, that point risks getting lost.

GenePeeks has just received $3 million in financing. The concept of adding genetic profiles to dating sites seems to be gaining steam. These trends suggest that this film could well be “more of a glimpse of the future than simply a hypothetical conversation about ethics and genetics.”

But if The Perfect 46 is “a sort of prequel to Gattaca,” hopefully we will find a way to stop short of that future.

You can find upcoming screenings of this thought-provoking film here, and check out CGS’s personal genomics news page here. Can you make it through the hall of mirrors, discerning the difference between fiction and reality?

Previously on Biopolitical Times:

    Quantified and Analyzed, Before the First Breath

    Posted by Jessica Cussins on June 26th, 2014

    Razib Khan with his baby boy

    Untitled Document

    Razib Khan, a PhD student at UC Davis studying the evolutionary genetics of cats, admits that he has “an obsession with genetics.” Two years ago, he sent 23andMe a genetic sample of his 2-month-old daughter so that she could be “easily slotted into the bigger genomic family photo album.”

    At the time he predicted that “in the very near future, parents will be able to avail themselves of precise and accurate genomes of their future child in utero.” And just last month he declared, “The future is here, deal with it.”

    So it is.

    When Khan’s wife became pregnant with a boy, they didn’t waste any time. She had a biopsy of tissue taken from her placenta sent for testing of chromosomal abnormalities. The test showed that the boy was healthy, but Khan wanted to know everything.

    After some difficulty, he obtained the original sample from the lab that had tested it and, using his own lab’s high-speed sequencing machine (usually reserved for plants and animals), sequenced the fetus’ entire genome. Using free online software, he was then able to determine 7,000 “genetic variants of interest.” Apparently there was nothing to worry too much about because Khan reported, “It’s mostly pretty boring. So that is good.”

    And so his son was born in California earlier this month, becoming the first known healthy baby in the US to have had his entire genome sequenced before birth.

    What will it be like to grow up with 7,000 “genetic variations of interest”? At what age will he be told about which? Will he be treated differently because of any of them? Or encouraged to develop specific skills or behaviors? The limited guidelines available for dealing with the genetic testing of children have already been flouted.

    Although Khan told MIT Technology Review that sequencing his son “was more cool than practical,” he also “did it to show where technology is headed.” Is this really what most parents will want?

    Khan is blunt about the rationale for extensive sequencing in utero – parents will still have a choice about whether to carry out the pregnancy. And he freely acknowledges that this technology throws us headlong into “the second age of eugenics.” But he believes that “the ability to select for quantitative traits” is “a major goal.” And though he regrets that perfection may still be far off, he notes that whole genome sequencing allows one to “select for mutational load” and exclaims,

    The marketing pitch for this writes itself: imagine you, but bright of mind, and beautiful of face!

    When a technology is so directly imbued with the values that motivated recent human atrocities, what are the avenues for responsible integration? The question of which lives are worthy of existence is one that, in my mind, should never be uncontroversial.

    Kevin Mitchell, an Associate Professor in Developmental Neurobiology in Ireland, discussed some of these issues in a blog post last year and concluded,

    In the meantime, before we go proposing scientifically impractical and morally questionable extreme measures, we have a proven and powerful tool to make people smarter: education.

    But Khan isn’t buying it. His newest blog? Reading to Newborns Is Probably Useless.

    Previously on Biopolitical Times:

    Wading into Racism

    Posted by Pete Shanks on June 6th, 2014

    Nicholas Wade

    Nicholas Wade’s book A Troublesome Inheritance: Genes, Race and Human History has been out for a month, and the fuss, such as it was, seems to be dying down. As of June 6, its Amazon rank has dropped to 1300 (it did briefly hit 21), while Barnes and Noble has it at 34,695, and in The New York Times it’s only at 7 in Science Times, below the long-running hit about Henrietta Lacks.

    A roundup of reviews by a supporter essentially confirms that those scientists who bothered to review the book panned it. The Genetic Literacy Project is listed as a positive review, but in fact that’s just a report on Charles Murray's piece in the Wall Street Journal. The minority who were predisposed to agree with his thesis — self-described "race realists" and the like, including some anti-semites at David Duke's site — by and large came away wondering why Wade didn’t go further.

    So, is "scientific racism" dead? Unfortunately, it's too soon for that particular funeral. This was just a bad book.

    The biologists and anthropologists have taken mighty whacks at A Troublesome Inheritance, though the historians seem to have wisely ignored it. As one raised British, however, I cannot resist quoting Wade’s summary (derived from the work of Gregory Clark) of the changes in England that led to the Industrial Revolution:

    Most children of the rich had to sink in the social scale, given that there were too many of them to remain in the upper class. Their social descent had the far-reaching genetic consequence that they carried with them inheritance for the same behaviors that had made their parents rich. The values of the upper middle class — nonviolence, literacy, thrift and patience — were thus infused into lower economic classes and throughout society. Generation after generation, they gradually became the values of the society as a whole.

    This is nuts. On many levels, even without the posited evolution of the English gene pool. Did the aristocracy really get rich by being patient, thrifty, well-read pacifists? Uh, no. What Wade is caricaturing here is the petit-bourgeois social armament against exploitation by their employers. It’s bad history, bad economics, bad sociology, bad psychology … to go along with the crackpot science.

    But the topic is important, not because this book is a menace to society — though it would be if taken seriously — but because the category error that confuses human genetic variation with socially constructed race remains all too common.

    As witness, this doubtless well-intentioned article by Victoria Colliver in the San Francisco Chronicle on May 20:

    Racial diversity crucial to trials of drugs, treatments

    Diversity is certainly important. A trial that included only or mostly men for a condition that also affects women would obviously be lacking, though sadly unsurprising. (A recent paper showed that evolutionary biologists studying genitalia still tend to study penises.) Social communities may indeed be worth studying, for their shared environmental and attitudinal responses. And that does tend to map, to an extent, with self-identified race.

    But to think that the problem of genetic diversity in a population sample has been adequately addressed by applying socially constructed race is to make a crucial mistake. And one that may have serious consequences, as social disadvantages are redefined as genetic, with all the baggage that can entail.

    Wade repeatedly insists that he actively opposes racism:

    The issue is how best to sustain the fight against racism in light of new information from the human genome that bears on race.

    That was from his attempt to answer his critics. Anthropologist Agustín Fuentes (whose early conversation with Wade about the book set the prevailing tone of well-warranted critical dismissal) responded, again, that Wade knows not whereof he speaks:

    Humans vary biologically, and we are not all the same. But there is only one biological race at present in our species. Understanding that, and the science behind it, is critical.

    Previously on Biopolitical Times:

    Orphan Black: The Best Show You’ve Never Seen

    Posted by Jessica Cussins on May 29th, 2014

    Human cloning made a media comeback in the last year, with news of three different research groups making embryonic stem cells out of embryos cloned from adult cells, only 17 years after the technique worked to create Dolly the sheep. The scientists have stated clearly that these cloned embryos are meant for research and therapeutic purposes, and that they oppose any efforts to create human clones.

    Forbes writer John Farrell isn’t buying it. In his view,

    The breakthrough also means that it is now just a matter of time before reproductive cloning is achieved. Probably within the next decade, as one scientist has told me.

    As CGS has repeatedly asserted, it really is the time for that federal ban.

    What might our unregulated Brave New World look like? BBC America’s television series, Orphan Black by Canadian director John Fawcett, nails it. Now into its second season, this show is seriously good, and starting to get some real recognition.

    [SPOILER ALERT] It all begins when Sarah Manning, an English punk who has stolen her boyfriend’s cocaine stash so she can get money to take care of her young daughter, falls asleep on the train and wakes up to find herself at Huxley station. (The cultural references are copious so keep your eyes out.) She moves toward the only other person around, and is shocked to see a woman who looks exactly like herself, if only she were showered and wore a dress suit. Things get interesting fast, as the look-alike jumps in front of the next train, committing suicide before the two can share a word. Quick on her feet, Sarah grabs the purse her double left behind and runs, composing a plan to steal the cash and get her life back on track before anyone can know the difference.

    It doesn’t quite work out as she hopes.  Sarah soon finds herself deep in a world of secrets and murders that make her former life as an orphan on the run seem easy in comparison. After meeting three more women who look exactly like her, Sarah is finally let into the secret: the women are not long lost twins, but the result of an illegal medical experiment; they are clones. They look the same, but life has dealt them each very different cards. There’s a Ukrainian assassin raised by an ultra-religious group called the Proletheans who have taught her that clones are an abomination of nature, a lesbian grad student with dreads researching the clones’ genetic makeup, and an uptight suburban soccer mom who wears lululemon and funds the “clone club’s” efforts. It turns out that the one who killed herself was a pill-popping investigative cop.

    Sarah’s original plan to take the money and run - with daughter (the only known offspring of a clone) and adopted brother (Felix Dawkins) in tow - slowly fades as she starts to unravel the mystery of her existence, and become entwined with the lives of her genetic identicals. The clones slowly realize that their origin story lies with a pro-eugenic scientific movement called Neolutionism, a group that boasts of its ability to self direct the evolution of humanity.  The movement’s front man, the charismatic but not-quite-right Dr. Aldous Leekie, is a figure reminiscent of futurist Ray Kurzweil, and he’s got a following to match. In response to a reporter’s question about what his ideal human would look like, Leekie jokingly suggests “people with white hair and one white eye.” Not long after, a whole slew of “Freeky Leekies” pops up, “enhanced” to have those very characteristics.

    Not wanting his precious clone creations to be far from reach, Leekie has assigned each clone her own “monitor,” people the women believe are their loved ones, but who actually track their every step. In the season one finale, it is revealed that his control goes further when Cosima (the grad student with dreads) cracks the code she found encrypted in each of their genomes. It turns out to be a patent held by Leekie and his obviously prosperous Dyad Institute.

    In the real-world United States, “claims directed to or encompassing a human organism are ineligible” for patents. However, Orphan Black is deliberately ambiguous about where it takes place. Complicating the issue, the show examines the question, what does it mean to be human? The United States Court of Appeals for the Federal Circuit just ruled that cloned animals cannot be patented based on the notion that they are the genetic replica of naturally occurring organisms, but could even a tiny portion of synthetic DNA render one distinct?

    Orphan Black certainly doesn’t shy away from drama or controversy, but it manages to pose the big questions without ever coming off as contrived. This is a memorable, unique series, and it seems likely that it will inform public opinion on human cloning for some time. Given the current technological media storm, we all ought to join the conversation. Orphan Black provides the perfect, fun excuse to do so.

    Previously on Biopolitical Times:

    Nicholas Wade: Genes, Race and Anthropology

    Posted by Pete Shanks on May 8th, 2014

    Untitled DocumentUpdate 5/12/14: A review of the book by Jonathan Marks has now been posted at In These Times.

    Nicholas Wade has just published a new book, titled A Troublesome Inheritance: Genes, Race and Human History. A veteran science journalist, with The New York Times and before that both Science and Nature, Wade might be thought to be in a great position to report on this contentious topic.

    Over the past 15 years or so, since the announcement that the human genome had been “mapped,” geneticists have certainly not been reticent about searching for hypothesized racial differences in DNA. Indeed, this has been part of Wade’s beat since at least 2001 (e.g., 1, 2, 3, 4, 5, 6). Race also featured in a chapter of his 2006 book, Before the Dawn.

    But he is presenting his new book as a brave exercise in truth-telling:

    Scientists are afraid to talk about race. They know that they risk being denounced as racists and having their careers destroyed if they even mention the subject, so they refer to it instead in code words. So I decided that I would write a book that explained what we know about race and what the consequences might be, and I think [Ashley] Montagu made a terrible mistake, though I share his motives.
    Montagu was the anthropologist who, in the 1940s and 1950s, did perhaps more than any other social scientist to establish the idea that race is primarily a social construct rather than a biological reality.

    Today the genomics community may be somewhat uncomfortable addressing the issue of race and genetics head-on, but anthropologists are not. The first serious public examination of Wade’s current project came on May 5 in a webinar (still available online) organized by the American Anthropological Association, which was set up as a “discussion” featuring Wade and Notre Dame Professor Agustín Fuentes, moderated by AAA Executive Director, Dr. Edward Liebow.

    It was not so much a discussion as a debate, and in my view Fuentes defeated Wade thoroughly, though it was all very polite (too polite). Fuentes was well prepared, and able to identify, cite and comment on every study that Wade brought up to support his thesis. More important, he kept hammering away at the definition of “race” — as in, Mr. Wade, can you tell us, what is it? If you are going to claim that certain kinds of genetic variation between populations constitute a racial grouping, how do you define it?

    Mostly Wade ignored the question. To the extent that he addressed it, he dismissed it as unimportant. Whether there are three or five races, or more, and where the boundaries are drawn: these are mere details until we admit the possibility of discussing race. (I’m being a little kind to him here myself; he burbled.)

    Wade is full of factoids; the impressive thing about Fuentes’ performance was that he was familiar with all of them. That inevitably led to some points of agreement. For instance, at one point, Wade started to speculate about what percentage of genetic divergence would constitute a sub-species, and zoologically, they were in broad theoretical agreement. However, Wade seemed to be edging towards very dangerous waters when it came to the concept of human sub-species. Unfortunately, Fuentes and moderator Liebow were too polite to shove him in.

    Which is a shame. The first reviews, and the most enthusiastic early reception, have been on blatantly racist websites. Jared Taylor reviewed it at American Renaissance (which promotes “race realism”) on March 2; John Derbyshire at VDare (an anti-immigration site) on March 14. The marketing department at Penguin, which published Troublesome Inheritance, offered pre-release copies (CGS got one too) with the pitch that the book will produce "a heated debate," presumably on the theory that controversy boosts sales. On the day of publication, May 6, Bryce Laliberte at Social Matter (“not your grandfather’s conservatism”) called it “certain to be this year’s most important book,” and opined emphatically that
    The KKK were right.
    Laliberte does call the KKK “bad guys,” but he blames the ills of society on “the academic and activist leftists” who promote “the notion that individuals and groups are essentially interchangeable.” He is sure that Wade will be vindicated, and offers a notably full-throated endorsement. Other writers of this ilk had their doubts, expressed for example by Taylor:
    However, there is much waffling in this book, which was no doubt meant to ward off beatings but that, at least to undeceived readers, rings of timidity.
    Derbyshire refers to “squid ink” that he assumes is intended to deflect critics. Some of the commenters at these sites, and even Stormfront (white pride world wide) are more charitable, suggesting that Wade had guts, hit “a solid double” and implying that perhaps he had to hold back in order to keep his job.

    Now that the book is officially published, it’s beginning to get wider attention. Charles Murray, co-author of The Bell Curve, weighed in at the Wall Street Journal on May 2; this was widely linked and quoted, especially in conservative circles. Ross Douthat has read it, and says he's looking forward to a review by Ta-Nehisi Coates. Statistician and political scientist Andrew Gelman, in Slate, calls the book “both plausible and preposterous”:
    Wade’s arguments aren’t necessarily wrong, just because they look like various erroneous arguments from decades past involving drunken Irishmen, crafty Jews, hot-blooded Spaniards, lazy Africans, and the like.
    Wade insists that his intent is absolutely not racist:
    I think it’s best to say that racism is wrong as a matter of principle, as a matter of absolute principle, and that way you don’t care what the science says, because you’re not going to change your mind about your principles.
    That was at the webinar (around 17 minutes in), where neither Fuentes nor Liebow pushed Wade on the subject of his supporters. Anthropologist Jonathan Marks might have been a stricter interviewer, based on this from his March blog post “Genetics as political ideology”:
    By implication, then, the only way to understand claims about human genetics is to understand that they are never value-neutral, and are invariably politically valent.  This means that scientists ought to be just as accountable to justify the deducible political implications of their work as they are to justify the data collection and statistics.
    Wade clearly takes the opposite view. He’s wrong all round.

    Previously on Biopolitical Times:

    Advocates for Children and Childhood Mobilizing on Concerns about GM Babies

    Posted by Marcy Darnovsky on April 17th, 2014

    Last week's Global Summit on Childhood in Vancouver, a gathering of some 500 advocates for children and childhood, included a session titled "Genetically Modified Babies? An Immediate Threat to Children and What Advocates Can Do Right Now"

    Mothers for a Human Future's Enola Aird and I spoke about the proposal pending in the UK for clinical trials of the "three-person embryo" technique that would constitute inheritable genetic modification. Draft regulations are being finalized now, and will be delivered to Parliament as soon as next month. 

    Information for delegates to the Summit - and anyone else - who would like to communicate about this proposal to MPs and other authorities in the UK can be found here. Also online are the flyer for our session and our PowerPoint presentation.

    Concern about the safety, efficacy, familial and societal implications of such socially and biologically radical procedures has been growing among advocates for children and childhood. Recent commentaries include several by Enola Aird  at MomsRising.org:

    Peggy O'Mara, former editor and publisher of Mothering, has also written on the issue:

    For more information on "three-person embryos" - the technology, policies, social and ethical implications - please see CGS's resource page.

    Previously on Biopolitical Times:

    Old Songs, New Tests, and Expensive Children

    Posted by George Estreich, Biopolitical Times guest contributor on February 20th, 2014

    The “distressed baby” Tim Armstrong blamed for benefit cuts. Photo by Deanna Fei

    On Thursday, February 6th, Tim Armstrong, the CEO of AOL, justified a restructuring of the company’s 401(K) matching plan by citing the sick children of employees. Two sick children, to be exact. At an internal town hall meeting, Armstrong claimed, "We had two AOL-ers that had distressed babies . . . that we paid a million dollars each to make sure those babies were OK in general.” Unsurprisingly, the backlash was substantial. Tone-Deaf CEO is a tune we all know, and Armstrong’s improvisation on the theme, like others in the genre, was both memorable and inelegant. The complex discordance of Caring (“OK in general”), Slashing (the benefit cut), and personal wealth (Armstrong’s salary last year: twelve million dollars)—not to mention the blaming-the-infants thing—was answered by a disapproving choir, tweeting and talking and commenting, more or less in unison. Armstrong has since apologized and restored the matching plan to its previous form.

    Rising above the other voices was a personal essay published in Slate, and written by Deanna Fei, the mother of one of the babies in question. Fei’s daughter was born months premature, weighing less than two pounds, and her narrative exposes the euphemism “distressed” for what it is:

    We were too terrified to name her, to know her, to love her. In my lowest moments—when she suffered a brain hemorrhage, when her right lung collapsed, when she stopped breathing altogether one morning—I found myself wishing that I could simply mourn her loss and go home to take care of my strapping, exuberant, fat-cheeked son.

    Since Armstrong’s announcement effectively compromised Fei’s privacy, she essentially had two options. She could remain silent, thereby accepting Armstrong’s characterization of her daughter as a “cost,” or she could out herself, then speak for her child.  She chose the latter, replying to his numbers with a story. In doing so, she makes clear that numbers are not enough, that cost and value are not the same.


    DNA Dreaming

    Posted by Jessica Cussins on January 13th, 2014

    DNA Dreams, a new documentary by Dutch filmmaker Bregtje van der Haak, could just as well be called DNA Nightmares. The scenarios it unfolds have a kind of eerie pseudo-logic that would be at home in a horror film. But DNA Dreams is a depiction of events happening right now, and that should make us all afraid.

    DNA Dreams explores the inner workings of Shenzhen BGI (formerly Beijing Genomics Institute), which calls itself "The World’s Largest Genomics Organization." In addition to its tag line, the company boasts enormous sequencing and storage capabilities, thousands of scientists, and grandiose plans. In one scene, BGI chair Dr. Yang Huanming tells a spellbound crowd in a packed auditorium,

    I have a dream. We have a dream. That we are going to sequence every living thing on Earth, that we are going to sequence everybody in the world.

    But sequencing isn’t all that BGI has up its sleeve.

    DNA Dreams follows Zhao Bowen, a "science prodigy" in his teens who dropped out of high school and now leads BGI’s Cognitive Genomics Group, a controversial project working to uncover the genetic basis of intelligence. Over 4,000 bio-informaticians are undertaking whole genome sequencing of 2,000 particularly bright people using the world’s most powerful DNA sequencers. They believe that it is only a matter of time before the alleles associated with intelligence reveal themselves.

    In one fascinating scene, a number of key BGI players are eating dinner together, discussing how their research will enable parents to screen their embryos and choose the one that will become the smartest child. One argues,

    This isn’t even positive eugenics that we’re talking about, we’re not encouraging smart people to have kids, we’re encouraging everyone who has kids to have the best kids they possibly could have.

    Amid nods of approval, another notes, "I would totally be willing to do it."

    At another point, Michigan State University’s Stephen Hsu, who has been involved with the project, waxes lyrical on its potential,

    The best humans have not been produced yet...If you want to produce smart humans, nice humans, honorable humans, caring humans, whatever it is, those are traits that are related to the presence or absence of certain genes and we'll have much finer control over the types of people that are born in the future through this.

    We do it with cows, we have super cows and super chickens...We've pushed those animals in directions we want to push them, but we haven't really pushed ourselves, and I think people will push themselves.

    There are plenty of reasons to believe that such control of human life won’t work technically – and that if it did, even a little, it would be disastrous socially. Yes, we’ve made cows that get bigger quicker (and genetic manipulation is not the only way this has been done). We haven’t made cows that are smarter, nicer, more honorable, or more caring.

    And scientifically, the notion that complex human traits could be determined by "the presence or absence of certain genes" could well end up being nothing more than a DNA pipe dream (another alternative title for this documentary). A paper published in Science earlier this year, with over two hundred authors, reported on a genome-wide association study of over 100,000 people that looked for clues into the genetic basis of cognitive ability.

    The grand conclusion? All the measured single-nucleotide polymorphisms (SNPs) account for about 2% of the variance in educational attainment and cognitive function. In other words, "fully 98% of all variation in educational attainment is accounted for by factors other than a person’s simple genetic makeup."

    But BGI researchers are undeterred. They believe that the scale at which they can apply whole genome sequencing is unprecedented, and that this will provide them with answers others haven’t found. Bowen says,

    It is generally assumed that intelligence is hereditary. Scientists such as Robert Plomin have been studying this for years. But so far they’ve only discovered one percent of that genetic basis. With confidence we can say that we’ll be able to get much further.

    Other scientists also seem to have confidence in BGI's cognitive genomics approach. In an interview last spring, evolutionary psychologist Geoffrey Miller (who contributed his own DNA to the project) speculated that it could be only a matter of years before BGI's technology is used for widespread sequencing of human embryos. When asked if he thought the project could develop into something more sinister, he replied, "That same research does open up the door potentially to genetic engineering in the future."

    Other BGI already projects could also help open that door. As DNA Dreams shows us, the company has extensive animal cloning and genetic engineering facilities. Its experimental farm produces multiple cloned pigs every day, some of them genetically engineered to glow in the dark, others to be prone to type II diabetes. The farm's 25-year-old director Lin Lin is proud of her work. Beaming at the camera with youthful enthusiasm, she says, "This is life that I created. It was made by my hands."

    China, along with dozens of other countries (but not the US), currently bans human cloning and inheritable genetic modification. But BGI now has partnerships all over the world. If the technology improves and a country that hasn’t outlawed it wants to proceed, what would happen? Bowen, for one, believes that "people ought to be free to manipulate their children’s IQ. It’s their own choice."

    Bowen is not the first to link the rhetoric of individual choice to a supposed "right" to genetically redesign future children based on personal preferences at a particular moment. But this is a spurious argument. As Nathaniel Comfort points out in a recent Scientific American post called "Is Individuality the Savior of Eugenics?,"

    Individual eugenics, in other words, dissolves into a species of collective eugenics. Focusing on individual health does not absolve us of the evolutionary question, Whither humankind?

    In an opening scene, DNA Dreams shows a clip from a 1962 film in which a man says about the power of DNA, "All the secrets of life are hidden in this substance. This bottle is somewhat like Pandora’s box. It’s better to keep it closed, and we’ll explain to you why."

    DNA Dreams doesn't offer an explicit position on what DNA developments should be kept inside the box. It allows the fantastic and terrifying reality of BGI to speak for itself. If you can catch this provocative film at an upcoming festival, you’ll find a lot worth pondering.

    Previously on Biopolitical Times:

    Chinese Scientists, “Genius Genes,” and the Future of Genomics

    Posted by Jessica Cussins on January 7th, 2014

    The Gene Factory,” an article out earlier this week in The New Yorker, carries the subtitle, “A Chinese firm’s bid to crack hunger, illness, evolution – and the genetics of human intelligence.”

    That firm is BGI, formerly known as Beijing Genomics Institute, a company with 4,000 employees working in a humble eight-story former shoe factory in Shenzhen, China. BGI single-handedly produces over a quarter of the world’s genomic data; it has sequenced over 57,000 people as well as many varieties of plants and animals.  And it has no intention of slowing down. As New Yorker writer Michael Specter reports,

    The company says the data will help explain the origins and the evolution of humanity, improve our average life span by five years, increase global food production by ten per cent, decode half of all genetic disease, understand the origins of autism, and cut birth defects by fifty per cent.
    BGI’s immense, tireless sequencing (and labor) power enables it to undertake work about which other researchers can only dream. At least at the moment, BGI is eager to share its findings. When a deadly strain of E. coli bacteria appeared in Germany in 2011, BGI researchers managed to sequence the bacterial genome in just three days. They live-tweeted their work as it unfolded and made the final data entirely public. This novel approach produced results from researchers around the world that helped prevent a deadly outbreak.

    BGI was formerly an affiliate of the Chinese Academy of Sciences, but in the words of its president, was “kicked out” for its “crazy” ideas. That’s when the company really began to flourish. After getting its bearings with minimal research on the Human Genome Project, BGI now has sequencing facilities all over the world, and says it will offer whole genome sequencing for less than a thousand dollars by the end of next year.

    But many of the recent headlines about BGI have been about just one of its efforts, which it describes as a relatively small one: the Cognitive Genomics project, which aims to uncover the genetic basis of intelligence by poring through the genomes of thousands of people with extremely high I.Q.s. The project is of course controversial because of how often biological definitions of intelligence have been used to validate problematic and often horrific policies and practices.

    Historically, biological explanations for human “fitness” or “superiority” have always been based on what is considered the best science of the time. But it’s likely that complex behavioral traits like intelligence will never be “found” in our genomes; studies so far have produced incredibly limited results.

    BGI knows it is treading in socially and ethically treacherous waters with its intelligence project. A BGI press representative told Specter multiple times, without being prompted, that the company would never engage in eugenics. But a number of the researchers involved, including Stephen Hsu, a vice-president for research and graduate studies at Michigan State University, are explicit about what the findings of the project could do to “improve” human reproduction. They seem to welcome the prospect of a real-world Gattaca, in which embryos are extensively screened and carefully selected (and genetically manipulated, as Hsu envisions) prior to implantation.

    BGI intends to be a trail-blazer with this project and in the field of genomics in general. Its managers have taken the attitude that their critics will come around when they see their results. Even if that’s not the case, BGI simply may not care. Jian Wang, the company’s president, told Specter,
    In the United States and in the West, you have a certain way. You feel you are advanced and you are the best. Blah, blah, blah. You follow all these rules and have all these protocols and laws and regulations. You need somebody to change it. To blow it up. For the last five hundred years, you have been leading the way with innovation. We are no longer interested in following.
    The BGI profile in The New Yorker follows a flurry of media attention in early 2013 to the company and its Cognitive Genomics project, with articles in the Wall Street Journal, MIT Technology Review, Business Week, and Financial Times. In February, project leader Zhao Bowen promised that "Our data will be ready in three months' time." In other words, we haven’t heard the last of BGI or “genius genes.”

    For more on BGI, as depicted in a documentary film from The Netherlands, check back with Biopolitical Times next week.

    Previously on Biopolitical Times:

    Biopolitical News of the Year 2013

    Posted by Pete Shanks on December 19th, 2013

    For better and worse, 2013 has been a year in which several related issues familiar to those who follow human biotechnology moved into the wider sphere of public discussion. Many involve genetic testing — at every stage of life — and some explicitly raise issues of inheritable genetic modification. The legacy of eugenics past, the horror of sterilization abuse in the present, and the advocacy of genetic selection for intelligence and other traits in the near future all hit the headlines.

    The U.S. Supreme Court issued a series of important and yet strangely incomplete rulings whose implications are still being unraveled. The commercialization of synthetic biology and other newly developed technologies proceeded apace, with well-financed businesses, partly crowd-sourced ventures and a number of outright scams. The assisted reproduction industry continued its global spread, and there were encouraging signs of academic interest in analyzing its processes.

    After the jump, much more on:

    • Testing, Testing …
    • “Three-Parent” Babies and Inheritable Genetic Modification
    • Eugenics: Past and Present as Prologue
    • IQ and Genetics and Education and Immigration
    • A Glowing Push for Synthetic Biology
    • The Global Assisted Reproduction Industry
    • California: Women's Eggs, DNA & Police Databases, the Stem Cell Agency
    • The Supreme Court Dives In
    Read more ...

    Future Past: Disability, Eugenics, & Brave New Worlds

    Posted by Jessica Cussins on November 7th, 2013

    Future Past poster

    A public symposium called Future Past: Disability, Eugenics, & Brave New Worlds, held on November 1 at San Francisco State University, provided a rare and important opportunity to engage with the historical and ongoing implications of eugenic ideologies and practices for people with disabilities. The day-long event was co-organized by the Center for Genetics and Society, the Paul K. Longmore Institute on Disability, Living Archives on Eugenics in Western Canada, and Facing History and Ourselves.

    More than a hundred participants of diverse backgrounds and disciplines heard presentations from three panels, took part in facilitated small-group discussions, and watched a sneak-preview screening of a new documentary.

    A number of questions inspired and illuminated the day: Why do the legacies and implications of eugenics matter now? How can we address them in teaching and pedagogy, in policy and activism, and in art? What are the social and ethical consequences of omitting eugenics from historical memory or misrepresenting it? What is the price of the pursuit of "human betterment" for reproductive and disability justice? What is being done – and what can be done – to increase understanding of the legacies of eugenics?

    The participants were welcomed by SFSU Provost Sue Rosser and Catherine Kudlick, Director of the Longmore Institute. The symposium's three panels then framed the day:

    • WHAT? Eugenics and Disability, Past and Present
    • SO WHAT? The Consequences of Misremembering Eugenics
    • NOW WHAT? Looking Ahead to Brave New Worlds


    Future Past: Disability, Eugenics, & Brave New Worlds

    Posted by Jessica Cussins on November 7th, 2013

    Future Past poster

    A public symposium called Future Past: Disability, Eugenics, & Brave New Worlds, held on November 1 at San Francisco State University, provided a rare and important opportunity to engage with the historical and ongoing implications of eugenic ideologies and practices for people with disabilities. The day-long event was co-organized by the Center for Genetics and Society, the Paul K. Longmore Institute on Disability, Living Archives on Eugenics in Western Canada, and Facing History and Ourselves.

    More than a hundred participants of diverse backgrounds and disciplines heard presentations from three panels, took part in facilitated small-group discussions, and watched a sneak-preview screening of a new documentary.

    A number of questions inspired and illuminated the day: Why do the legacies and implications of eugenics matter now? How can we address them in teaching and pedagogy, in policy and activism, and in art? What are the social and ethical consequences of omitting eugenics from historical memory or misrepresenting it? What is the price of the pursuit of "human betterment" for reproductive and disability justice? What is being done and what can be done to increase understanding of the legacies of eugenics?

    The participants were welcomed by SFSU Provost Sue Rosser and Catherine Kudlick, Director of the Longmore Institute. The symposium's three panels then framed the day:

    • WHAT? Eugenics and Disability, Past and Present 
    • SO WHAT? The Consequences of Misremembering Eugenics 
    • NOW WHAT? Looking Ahead to Brave New Worlds

    At the end of each panel, everyone took part in structured table discussions, which served to introduce the participants and to broaden each person's appreciation of the topics covered. These were based on engaging materials introduced by Milton Reynolds and provided by Facing History and Ourselves.

    WHAT? Eugenics and Disability, Past and Present

    Eugenics is based on the belief that certain lives are more valuable than others and that those with "higher" value should be encouraged to survive and reproduce while those with "lesser" value should be encouraged (or forced) not to. It takes for granted normative notions of value, humanity, and normality. And it assumes that people with disabilities have no place in this picture, that they are merely a problem to be fixed or erased. Future Past offered a chance to push back against this harmful ideology and worked to re-inscribe disability as a generative force, as another kind of human experience that has much to teach the world.

    The long and tangled history of eugenics involves uncommon bedfellows, with many progressives supporting it under various guises at different times. High school students in the United States often learn about the Holocaust as though it were the beginning and end of eugenics, and even many adults are unaware that twentieth-century eugenic laws in the United States resulted in the forced sterilizations of tens of thousands of people. These abuses had a disproportionate impact on communities of color, people living in poverty, and people with disabilities.

    Glenn Sinclair bravely recounted his own harrowing experiences of growing up in Alberta, Canada's Provincial Training School, an institution for mentally disabled children and adults. He talked about being sterilized as a child, against his will, and recounted feeling as though he had nothing, that he was no more than an animal. But he has been fighting against this enforced invisibility through sharing his story. He said, "We're all humans on this Earth. We all have our place."

    Nicola Fairbrother, the Director of Neighborhood Bridges, expanded on the Canadian history and noted some of the international connections. For example, she shared that the South African apartheid regime actually utilized some of the Canadian eugenics laws. Marcy Darnovsky, Executive Director of the Center for Genetics and Society, made connections between historical abuses of the past and technological advances of the present.

    For instance, the rise of genetic testing for embryos and fetuses to "screen out" genetic "abnormalities" sends the message that certain lives are a mistake, to be avoided if possible. These technologies threaten to bring about a new era of eugenics, guided by individual choices, but within a framework of particular social expectations. The availability of these tests has already greatly reduced the number of people in the world with Down syndrome, for example, and the marketing of non-invasive prenatal diagnoses sold with the rhetoric of health, choice, and information is bound to whittle this number down further. If technologies such as whole genome sequencing are offered in the future it will not only provide the allure of a healthy baby, but also of a "better" baby. We will be forced to contend with the complex terrain between reproductive rights and disability rights as these technological advances forever change the nature of pregnancy, knowledge, and power.

    The medical language of "cure" and "fixing" is pervasive in our society today, but the disability rights movement is burgeoning and now has an opportunity to fight back against harmful notions of "pure science." Technologies intended to eliminate groups of people are not neutral or merely a matter of personal autonomy, but are informed by particular ideologies of the time and have a profound impact on the larger tapestry of humanity. As medical historian Alexandra Minna Stern put it, "today's science is tomorrow's pseudo-science."

    Stern argued that what is needed now is a position that engages both reproductive justice and disability rights, a position that fights for the inclusion of a social model of disability where improved access to resources to help families make informed decisions and maintain a high quality of life are given priority. In her words, "it's a kaleidoscopic-type of map that we need." Future Past helped us all to shade in some of that map.

    SO WHAT? The Consequences of Misremembering Eugenics

    What are the implications of misremembering this problematic history? Of failing to see the implications of current practices and technological advances? Marsha Saxton, professor of Disability Studies at UC Berkeley who worked on the ELSI project for the Human Genome Project warned of the covert institutionalization of eugenics, as well as offering some of her own personal testimony as a person with spinal bifida.

    Troy Duster, Chancellor's Professor at UC Berkeley, asked participants to consider the conditions under which a society makes decisions about who can have a child. He argued that our own era's disruptive socio-economic transformations, and the appeal of political ideologies that categorize people as "makers" or "takers," may be creating "fertile soil" for the growth of new eugenic sensibilities.

    Rosemarie Garland-Thomson, professor of Women's Studies at Emory University, argued that eugenics has always been a utopian effort to supposedly control and improve the social order. But, she said, there is an increasingly persuasive counter argument. She mentioned disability rights advocate Harriet McBryde Johnson, whose Too Late to Die Young asserted that "the presence or absence of a disability doesn't predict quality of life."

    Rob Wilson, professor of Philosophy at the University of Alberta and principal investigator of Living Archives on Eugenics in Western Canada, argued that reparations can be an important tool for redressing past wrongs, not merely for the ways in which they can ease the suffering of survivors, but because they can force other people to engage with the issues and to see their own connections to difficult histories.

    NOW WHAT? Looking Ahead to Brave New Worlds

    Moving forward, it is important to understand that the history of eugenics does not begin and end with Nazis and the Holocaust. This limited view can cover up the pervasiveness and even the banality of eugenic ideas, which continue to devalue the lives of women, people with disabilities, ethnic and racial minorities, LGBTQI communities, and people of low socio-economic status through the normalization of practices such as coercive sterilization and prenatal genetic testing. Presenters and participants suggested a number of different ways we can move forward, using this knowledge to advocate for a more inclusive future.

    Milton Reynolds of Facing History and Ourselves argued that the process of transitional justice requires multiple intersectional levels of reform: educational, institutional, cultural, social and judicial. He noted that classrooms and teachers will play an important role in creating new frames for thinking about these issues and in allowing the clear vision of hindsight to elucidate contemporary situations.

    Patricia Berne, co-founder and director of Sins Invalid, a performance project that "incubates and celebrates artists with disabilities," encouraged engaging with disability through creative means and viewing it within a social justice context. She stated, "if we can't engage our political imagination than we certainly aren't going to have a policy that reflects something liberatory."

    Lick-Wilmerding High School teacher Kate Wiley discussed the importance of engaged involvement with young people. She shared an online petition at change.org that her students have created, which asks the Governor of California to include California's history of eugenics in state textbooks. (Check it out they still need more signatures!)

    Gregor Wolbring, Associate Professor of Disability Studies at the University of Calgary, skyped into the conference and brought the issue of human enhancement and germline engineering into the discussion. He argued that these technologies are a form of positive eugenics, based on the same ideologies of ableism that are inherent in negative forms of eugenics such as sterilizations.

    *  *  *

    A pre-release screening of the film FIXED: The Science/Fiction of Human Enhancement, and a discussion with producer and director Regan Brashear at the end of the day, brought this point home further. The film provided provocative material with which to question how technology fundamentally alters notions of normality and ability.

    Many things may come out of the Future Past symposium: connections between people of diverse ages, backgrounds, and disciplines; improved understanding and knowledge of resources for people working on these issues in various formats; and increased momentum for engaging more deeply with these issues. Through a better understanding of histories of intolerance, ignorance and eugenics, we may become more adept at contextualizing the present, and advocating for a more humane future.

    As Emily Beitiks, Assistant Director of the Paul K. Longmore Institute on Disability, said at the end of the day, hopefully in the future we will not need to hold a conference to make the argument that certain people have the right to exist.

    Previously on Biopolitical Times:

    Advocating Eugenics in the UK Department of Education

    Posted by Pete Shanks on October 24th, 2013

    Eton schoolboys

    Dominic Cummings, a senior adviser to the UK Secretary of State for Education, recently provoked a flurry of complaints by allegedly claiming that "a child's performance has more to do with genetic makeup than the standard of his or her education." In response, he insisted that he had "warned of the dangers of public debates being confused by misunderstanding of such technical terms." Whatever you may think of that defense, it's worth looking a little more closely, because Cummings' technocratic, effectively eugenic, definitely gene-focused approach is dangerously close to affecting public policy.

    Cummings has been called "arguably the most brilliant" special adviser in the UK government, but he also seems to be viewed as something of a loose cannon who has been blamed for leaks and criticized for the use of "colourful" language. He was awarded a First in History at Oxford, and has a background in activism against the UK adopting the Euro, and then controversial stints in the Conservative Party apparatus.

    As an education adviser, he wrote what is called, oddly, a "private thesis" for the UK's Secretary of Education. What Cummings himself calls an "essay" runs 237 pages and is modestly titled "Some thoughts on education and political priorities" (10.3 MB pdf). It is a … remarkable document. From the third paragraph:

    Less than one percent [of English school-leavers] are well educated in the basics of how the 'unreasonable effectiveness of mathematics' provides the language of nature and a foundation for our scientific civilisation. Only a small subset of that <1% then study trans-disciplinary issues concerning complex systems. This number has approximately zero overlap with powerful decision-makers.

    That's the flavor of the thing; basically, baffle them with bullshit. It's full of name-dropping: in the first four pages, we find mentions of Murray Gell-Mann, Thucydides, Rudyard Kipling, Dean Acheson, Carl Sagan, E.O. Wilson, Mark Zuckerberg, Linus Torvald and many more. Later on, Malcolm Gladwell is solemnly criticized because he "downplayed the importance of genes" as demonstrated in a New York Times review by Stephen Pinker. (This amuses me since I suspect that the three of them thoroughly deserve each other's company.)

    What provoked the fuss about this, beyond the frisson that comes from the document having been leaked by the Guardian, was Cummings' association of genes with IQ. He does indeed qualify his discussion of heritability, noting on page 196 that heritability "is a population statistic — it does not mean that for every individual x% of one's IQ score is accounted for by genes."

    But that's not really the problem with his approach. Let's start with Cumming's full-throated endorsement of the BGI project to identify the genes for intelligence. He approvingly quotes the physicist Steve Hsu (linking to a Google Tech Talk):

    Hsu says: 'I'm doing my best to increase the number of future humans who will be "fully awake". My current estimate is that one or two hundred common mutations (affecting only small subset of the thousands of loci that influence intelligence) are what separate an ordinary person from a vN [von Neumann].'

    Most of Cummings' genetics comes, as he admits — nay, boasts — from Hsu and Robert Plomin (who is "much more cautious" than Hsu about "engineering higher intelligence"). This is summarized in a nine-page Endnote on "intelligence, IQ, genetics, and extreme abilities." The concluding sub-section on "Genetics, school achievement, 'added value' measures" includes the hackneyed trope, beloved of Victorian schoolmasters, that:

    Instead of thinking about education as instruo (build in) we should think of it as educatio (draw out).

    How true that is. Especially for … oh, you guessed it. From page 76:

    We know (thanks to studies such as SMPY and Terman) that although cognitive tests are noisy, we can quite accurately identify the top ~2% in IQ on whom we rely for scientific breakthroughs and even crude tests at 13 predict differences within the top 1% [italics in original] in future scientific achievements … We should give this ~2% a specialist education as per Eton or Kolmogorov [see here and here], including deep problem-solving skills in maths and physics.

    And there you have the blatantly eugenic association of genes with intelligence, intelligence with worth, and worth with the right to rule.

    Steve Jones, Emeritus Professor of Genetics, critiqued Cummings based, it seems, on the first newspaper reports. What he wrote was fine, but Cummings did include enough caveats in his full document to wriggle out of the criticism and find points of agreement with Jones. Steven Rose, Emeritus Professor of Biology, offered a more detailed analysis in New Scientist, concluding:

    Whatever intelligence is, these failures show that to hunt for it in the genes is an endeavour driven more by ideological commitment than either biological or social scientific judgement. To suggest that identifying such genes will enable schools to develop personalised educational programmes to match them, as Cummings does, is sheer fantasy, perhaps masking a desire to return to the old days of the 11 plus. Heritability neither defines nor limits educability.

    At root, Cummings' simplistic genetics is not the issue. His technocratic eugenics emphatically is. And that deserves to be brought into the open and shredded.

    Previously on Biopolitical Times:

    23andMe Says It's Not (Now) in the Designer Baby Business

    Posted by Pete Shanks on October 4th, 2013

    Part of the patent application
    Part of the flowchart
    in the patent application

    On September 24, the direct-to-consumer genetic testing company 23andMe was awarded a patent for "gamete donor selection based on genetic calculations." The idea is that people using sperm or egg providers would choose from the gametes on offer based on the probability of getting the kind of child they want. The examples given in the application of the traits of hypothetical children that might be of interest include:

    Height, eye color, gender, personality characteristics and risk of developing certain types of cancer

    There is a helpful flowchart (part shown here) to explain how the technology would be used to evaluate the possible matches between the client (recipient) and the available donors, and so to identify preferred donors, given that it would be dealing with statistical information rather than certainties.

    That, of course, points up the biggest flaw in the process. Even a direct-to-consumer gene-testing company is compelled to acknowledge that there can be no guarantees. But they don't make clear that for the vast majority of "traits of interest," the associations between particular alleles and particular phenotypes are actually rather weak. (A few conditions, including single-gene ailments and some inherited forms of cancer, can be identified and avoided through pre-implantation genetic diagnosis or carrier screening, but they are rare.) The associations were weak four years ago, when the patent was filed, and they still are.

    But the company is, after all, in the genetic prediction business, and the patent in question referred to a "hypothetical child." So it's hardly surprising that when news of this patent broke, most journalists made the same call. Nature News and MIT Technology Review had "designer babies" in the headline. Wired called it a "designer baby system." The Los Angeles Times labeled it a "designer baby patent." New Scientist referred to "planning a baby."

    Perhaps the most thoughtful immediate response was published in Genetics in Medicine just before the media got hold of the story. Four European bioethicists (Sigrid Sterckx, Julian Cockbain, Heidi C. Howard and Pascal Borry) considered the patent under the title:

    "I prefer a child with …": designer babies, another controversial patent in the arena of direct-to-consumer genomics

    It's a short paper in which the authors largely restrict themselves to raising questions and noting controversy. They point out, for instance, that the U.S. Patent Office does not seem to have questioned whether such techniques "were appropriate subject matter for a patent" although it did invoke "morality" when considering the human/animal chimera patent application made by Stuart Newman and Jeremy Rifkin. (That was eventually rejected as too human to be patentable.) And the authors ask whether 23andMe's customers would be disconcerted by this use of their collected data; there was an outcry last year when the company was granted a patent for a test for Parkinson's disease.

    As soon as the news stories began to appear and 23andMe realized that people were drawing the obvious conclusion, it began backtracking hard. It now claims that the patent relates to "one of the tools we offer individuals as part of their genetic exploration [which] offers an engaging way for you and your partner to see what kind of traits your child might inherit from you." Nothing there about choosing donors. The company's blog explains:

    At the time 23andMe filed the patent, there was consideration that the technology could have potential applications for fertility clinics so language specific to the fertility treatment process was included in the patent.

    To say "included" is disingenuous; the process description in the patent is entirely about the selection of gametes from strangers. The post continues:

    But much has evolved in that time, including 23andMe's strategic focus. The company never pursued the concepts discussed in the patent beyond our Family Traits Inheritance Calculator, nor do we have any plans to do so.

    So that's all right then. But wait, there is a kicker in that same statement:

    23andMe believes that patents should not be used to prevent individuals from accessing their genetic data or its interpretation.

    So would the company license that patent? It doesn't say. The Center for Genetics and Society has called on 23andMe to use its patent to prevent others from exploiting this technology. That's not unheard-of: the Newman/Rifkin application was explicitly intended to prevent development of chimeras. Thus far, 23andMe has not explicitly ruled out its future use.

    Many of those who commented on the 23andMe patent, including CGS, law professor Lori Andrews, and geneticist Daniel MacArthur, expressed doubt about the practical feasibility of most trait selection. But even if scientifically dubious, the project of "breeding better babies" is, obviously, morally and socially fraught.

    A few philosophers, such as Julian Savulescu, actively campaign for it as a moral imperative. In opposition stand CGS and many others. Harvard's Michael Sandel put it well when he said that trait selection "edges close to eugenics." This debate has up till now been theoretical. It's getting all too real.

    Previously on Biopolitical Times:

    Involuntary Sterilization Then and Now

    Posted by Jessica Cussins on August 28th, 2013

    California women prisoners

    Victims of forced and coerced sterilizations carried out under North Carolina’s decades-spanning Eugenics Board program finally received some good news earlier this summer: The state legislature has agreed to spend $10 million to compensate them for the abuse they suffered. Offering compensation to those who are still alive – 177 men and women have come forward and been verified so far – is an important recognition of the moral and practical failure of this eugenic practice.

    North Carolina sterilized some 7,600 people between 1929 and 1974 for a range of reasons, including findings by authorities that they were lazy, promiscuous, or poor. State records have revealed the extent of the discriminatory nature of the program: “North Carolina's sterilization program zeroed in on welfare recipients. Over the last 15 years of its operation, 99 percent of the victims were women; more than 60 percent were black.”

    The decision to compensate sterilization victims has been a long time coming. The state established the North Carolina Justice for Sterilization Victims Foundation in 2010, but the agency was temporarily forced to close its doors last summer when the Senate brought the compensation effort to a halt. Its ultimate success is in large part a testament to the passion of advocates such as Elaine Riddick, who was sterilized at the age of 14 after giving birth to a child that resulted from rape. She had no idea of what had been done to her until years later when she tried unsuccessfully to start a family with her husband.

    North Carolina will be the first US state to offer compensation to victims of sterilization, but could inspire some of the other thirty states that had similar eugenics laws to follow suit. Coming to terms with this history is hugely important. It’s easy in hindsight to recognize what it was: in the words of medical reporter Elizabeth Cohen, a “horrific chapter in American history.” At the time, however, as she points out, “the programs were supported by some of the nation's most respected doctors, lawyers, and social workers.”

    Most Americans are unaware of the country’s eugenic legacy. That is also true in California, where some 20,000 people, including a disproportionate number of Latinos, were sterilized under state auspices. As a group of California high school students pointed out in an online petition to incorporate this history into the curricula,

    Learning about eugenics in California is not simply about being more informed, or redressing past wrongs, but about considering difficult questions about justice, equality, and human rights. We have seen how these questions are now more important than ever, as we move into an uncertain age of genetic science. 
    Unfortunately, involuntary sterilizations, as well as the ideology that informs them, are not behind us. They still occur today, often arranged by people who seem to genuinely believe they are helping society.

    Guernica magazine recently reported that Kenyan doctors have been sterilizing HIV positive women, sometimes without their knowledge.  Israel has admitted to targeting Ethiopian Jews for compulsory long-term contraception. Sweden only just changed a 30-year-old law that required transgender people to undergo sterilization before they could legally be recognized as another gender.

    But involuntary sterilizations also occur much closer to home.

    Just last month, an exposé  by Corey G. Johnson of the Center for Investigative Reporting reported that 148 women in two California prisons were illegally sterilized between 2006 and 2010. Justice Now, a prisoner rights group that first uncovered evidence of this abuse, started a petition with Californians United for a Responsible Budget to demand that it end.

    Thankfully, these efforts are having an impact. California legislators have just unanimously approved an audit of the doctors who carried out sterilizations of nearly 150 women without required authorizations.

    Questionable sterilization efforts also continue today outside of prisons. A few years ago, a Louisiana state representative proposed paying poor people to get sterilized. A private organization, Project Prevention, pays crack addicts $300 to get sterilized. Wesley Strong recently wrote about its program:
    Barbara Harris and Project Prevention are products of a post-1980s era where racism, sexism, and classism are far more nuanced, where eugenics programs can hide behind liberal notions of charity.
    Looking from sterilizations of the past to those of today, it’s not hard to see all of the same racist, sexist and classist influences at play. However, as Nathaniel Comfort recently discussed in Scientific American, there are those who want to deny that structural discrimination still plays a role in modern eugenics. This “growing constituency of Drs. Jekyll within the biomedical community” argues that eugenic practices guided by individual choice are a clean break from the eugenics of the past. But as Comfort points out, “Individual eugenics, in other words, dissolves into a species of collective eugenics. Focusing on individual health does not absolve us of the evolutionary question, Whither humankind?”

    North Carolina’s compensation decision is a huge victory, and provides a valuable lens through which to see how easily eugenic practices can be viewed as valuable, progressive, social measures. Instead of waiting for the next generation to refer to our own “horrific chapter in American history,” let’s hope it signals an end to tolerance of all involuntary sterilization.

    Previously on Biopolitical Times:

    Made With Love

    Posted by Jessica Cussins on July 22nd, 2013

    Baby Connor Levy

    Last week, researchers at the University of Oxford announced that the first baby had been born after undergoing a technique which can sequence the entire genome of an embryo. The story was accompanied by a cute picture of baby Connor Levy, fast asleep on a fluffy white blanket wearing a shirt that reads: Made with love (where the ‘o’ of love is an image of an atom.)

    No one could deny the claim. His parents, a couple from Philadelphia, had tried natural pregnancy for five years, then three rounds of intra-uterine insemination, and finally IVF in the hopes of having a child. They decided to take part in Oxford’s international study of next-generation sequencing (NGS) and sent cells from thirteen of their IVF embryos. A fertility specialist looked at the chromosomes of each and found that three had the right number. One was implanted into the mother and nine months later Connor was born.

    In this instance, researchers used only the number of chromosomes as selection criteria. Chromosomal abnormalities account for half of all miscarriages and lead to conditions such as Down syndrome and Turner syndrome in the babies who survive to birth. Of course, not everyone sees this type of selection as wholly benign: Some question whether decisions to terminate pregnancies when Down syndrome is identified are typically made with full information; some consider the trend a problematic form of modern eugenics, rather than a medical necessity.

    But this is obviously a happy occasion for the Levy family, and for many others who are struggling with infertility. Many fertility experts believe that new forms of genetic testing can greatly increase success rates and efficiency of IVF overall, particularly for older parents. Michael Glassner, the couple’s fertility specialist, firmly believes in the potential of NGS and stated, “In five years, this will be state of the art and everyone who comes for IVF will have it."

    Genetic testing of embryos for the purpose of screening out disease does already occur. According to the Human Fertilisation and Embryology Authority, there are 263 medical conditions (and another 32 under consideration) that are considered serious enough to warrant the use of preimplantation genetic diagnosis (PGD), the genetic screening of embryos prior to implantation.

    But NGS carries potentially broader implications.

    This “revolutionary” process is capable of sequencing an embryo’s entire genome, providing an unprecedented degree of information about it prior to implantation. This would give parents much more (but often imperfectly understood) information, including about the child’s chance of developing certain diseases, as well as non-medical characteristics such as eye and hair color.

    Is this what parents want? William Saletan at Slate is concerned that we’re only reporting the successes of embryo testing and warns that

    We’re discarding embryos over the possibility of breast cancer, which rarely strikes before age 30, and early-onset Alzheimer’s, which doesn’t begin till 40 or 50. We’re rejecting them to avoid the risk of conditions such as rhesus blood disease, where onset is dubious (specific antibodies have to cross the placenta to the fetus) and the cure rate is 70 to 95 percent. We’re even chucking embryos just because their genes make them useless as tissue donors.

    To move from testing embryos for specific genetic mutations based on family history to testing entire genomes no matter what would be a huge shift. Saletan seems largely concerned with the fate of the embryos themselves, but there are other reasons NGS would put parents-to-be in an uncomfortable position. How would people longing for a child weigh one abnormality or imperfection against another, or contemplate abstractions such as a 50-60% disease risk against a potential human life?

    Nevertheless, there are already those with far broader hopes for the technology.

    Zhao Bowen, the 21-year-old who oversees BGI Shenzhen’s multimillion-dollar research project searching for the genetic underpinnings of intelligence, explicitly hopes his research will be used to breed smarter babies. According to Wired, those on his team “expect that within a decade their research will be used to screen embryos during in vitro fertilization, boosting the IQ of unborn children by up to 20 points.”

    Momentarily putting aside the fact that there is currently no evidence to suggest that genetic selection for intelligence is possible, if such research does pan out, it will largely be limited to the privileged elite. As Heather Long argues in the Guardian, “If we think the gap between the haves and have-nots is large now, just wait until this technology is used to pre-select characteristics for success.”

    Of course, the process of selecting among existing embryos is somewhat limited in its design capabilities. It is important to note the difference between choosing traits based on selection, and actually modifying the germline of embryos in order to create a desired result.

    An editorial in New Scientist noted that the announcement of Connor’s birth “brings the prospect of designer babies one small step closer,” but that “until it becomes possible to genetically engineer embryos rather than just select them, true designer babies remain in the realm of science fiction.”

    The authors agree that we shouldn’t simply sit back and wait for that to happen. But they fail to mention how close this possibility truly is. The UK Government is preparing right now to draft regulations that would undermine the country’s ban (as well as international law and consensus) to allow embryo manipulations that would effect all subsequent generations. The justification is that this step would be a limited one aimed at allowing a small subset of the women with very serious mitochondrial diseases to have a healthy and mostly genetically related child. But it would provide the biggest push to date down this particular slippery slope.

    Previously on Biopolitical Times:

    Illegal Sterilizations in Modern California Jails

    Posted by Pete Shanks on July 10th, 2013

    A prison tower

    Corey G. Johnson of the Center for Investigative Reporting (CIR) published on July 7th a detailed exposé of unauthorized sterilizations of unwilling women in California jails from 2006 to 2010:

    At least 148 women received tubal ligations in violation of prison rules during those five years — and there are perhaps 100 more dating back to the late 1990s, according to state documents and interviews.

    Read the whole thing. (Slightly shorter, and less linked, versions were published in the San Francisco Chronicle, Sacramento Bee and Modesto Bee.) The story has been picked up in many other outlets including Time and the MSNBC All In with Chris Hayes show, to the point where it seems to be going viral.

    Johnson's excellent and careful reporting has brought to national attention a scandal that some activists have already at least partially documented. Justice Now presented testimony [pdf] about it to a California Senate subcommittee on March 13, 2012, and discussed their findings at a conference in August (co-sponsored by CGS) called "Eugenics in California: A Legacy of the Past?" (video is available).

    It is important to note that, as the CIR article says (links are provided to the relevant statutes), these sterilizations were illegal:

    Federal and state laws ban inmate sterilizations if federal funds are used, reflecting concerns that prisoners might feel pressured to comply. California used state funds instead, but since 1994, the procedure has required approval from top medical officials in Sacramento on a case-by-case basis.

    Yet no tubal ligation requests have come before the health care committee responsible for approving such restricted surgeries …

    How could this happen?

    Governor Gray Davis apologized in 2003 for California's twentieth-century sterilizations, 20,000 procedures carried out under an explicitly eugenic law. He did so quietly, via press release, and with no attempt to discover or compensate the victims. (Recognized experts on American eugenics were disappointed at the time: Paul Lombardo called it "premature" and Alexandra Minna Stern said it was "preemptive.") Now his statement seems like a sham. The fault is no longer the law, it's the failure to follow the law.

    North Carolina is still struggling to pass a budget that includes compensation for its victims of eugenic sterilization. California has barely started the process of coming to terms with its troubled history.

    The California state prison system is overcrowded — Governor Jerry Brown is appealing a federal court order to release inmates — and conditions are so bad that 30,000 are on hunger strike. If this report about sterilization helps to usher in a period of genuine reform, that would be wonderful.

    We would still need to educate all too many people, inside and outside the jail system, about the moral and practical harm of modern eugenics. Based on some of the remarks by state officials that Johnson reported, and on some of the comments on coverage of his investigation, people slide right back into eugenic ways of thinking.

    Update, July 11: Justice Now and Californians United for a Responsible Budget (CURB) have started a petition "demanding that the state end; make amends for; and prevent sterilization abuse, period." (See Comments below for more.) Meanwhile the California Legislative Women's Caucus is demanding answers. This would be a good time to put pressure on the legislature and the Governor.

    Previously on Biopolitical Times:

    Eight Misconceptions about “Three-Parent Babies”

    Posted by Jessica Cussins on July 9th, 2013

    Man in thought surrounded by question marks

    Last month, the UK government announced it would move toward human trials of a risky, controversial and widely misrepresented technique known as “mitochondria replacement” or “three-parent babies.” The technique is currently prohibited by law in the UK (and in dozens of other countries), so final approval would require a legislative change. With another round of public consultation pending prior to legalization in the UK, here are the top misconceptions proliferating about the efficacy, safety, public support, and societal implications of mitochondria replacement.

    Misconception 1: Mitochondria replacement “will save lives.”

    It’s troubling when media accounts sloppily represent these techniques as “saving lives.” It’s worse when scientific and government officials mislead in this way. But it’s been far too common. Chief Medical Officer for England Dame Sally Davies, for example, claims that mitochondria replacement is a “life-saving treatment” and  “will save around 10 lives a year.”

    Fact: Mitochondria replacement will not save any lives; it is not a treatment for any of the people who are currently suffering from mitochondrial disease. Its aim is rather to create a prospective child who would be genetically related to a mother affected by the condition, and who would (if the new technique worked) be healthy.

    Misconception 2: Mitochondria replacement techniques will eliminate mitochondrial disease in future children, which no other technique can achieve.

    This is the fundamental premise and motivation for advocating these techniques, and it is repeated regularly. See examples here in the Telegraph and here in the Guardian.

    Fact: Both aspects of this premise are misleading. First, even if the techniques were to work perfectly, they wouldn’t be able to guarantee a child free of mitochondrial disease because in the majority of cases, the conditions are caused by anomalies in nuclear DNA. They can also occur due to spontaneous mutations or with age. Furthermore, the HFEA acknowledges that mitcohondria replacement may not even be effective at removing all of the mutated mitochondria from a future child. Annex VIII of its final report states:

    The panel recommends that any female born following MST or PNT should be advised, when old enough, that she may herself be at risk of having a child with a significant level of mutant mtDNA, putting this child or (if a female) subsequent generations at risk of mitochondrial disease. Thus, we recommend that any female born following MST or PST is advised that, should she wish to have children of her own, that her oocytes or early embryos are analyzed by PGD in order to select for embryos free of abnormal mtDNA. (page 5)
    That leads to the second point – there is already a safe available technique (preimplantation genetic diagnosis or PGD) that allows carriers of mtDNA mutations the ability to have healthy children of their own. If the HFEA recommends that girls born after mitochondria replacement use the technology, then why wouldn’t a woman simply use it in the first place? Even women with high levels of mutations in their own mitochondria can produce eggs with very low levels; PGD can find those embryos and (with a high rate of success) implant them back into a woman to produce a healthy child.

    Misconception 3: This technique would be in high demand because one in 200 babies is born with mitochondrial disease.

    Many news articles (particularly early on) bought into this, likely because the HFEA’s website states that, “Around one in 200 children are born each year with a form of mitochondrial disease.”

    Fact: This is an extremely misleading way to discuss the incidence of mitochondrial disease. The HFEA seems to be relying on findings that around one in 200 people in the general population have mutations in their mitochondrial DNA, but most of these people will not experience any negative impact. Estimates of the number of people who actually have mitochondrial disease run around one in 5,000-10,000. Their conditions run the gamut from very minimal to quite debilitating. But only about 15% of these cases are likely caused by mitochondrial DNA: the majority of mitochondrial disease is caused by interactions with nuclear DNA. Of this greatly reduced subset, it is only women with a very high level of mutations who would be potential candidates for using mitochondria replacement rather than PGD to have a genetically related healthy child. Officials at the UK’s Human Fertilization and Embryology Authority and at its Department of Health – both agencies that are advocating moving forward with mitochondria replacement – have estimated that perhaps 10 women a year would consider the procedure.

    Misconception 4: The techniques have been proven to work in animals.

    For example, the Guardian states here that “The procedure has been shown to work in animals.”

    Fact: There were a number of studies done mostly in the 1990s using one kind of mitochondria replacement technique (pronuclear transfer or PNT) in mice (see footnotes 3 – 6). However, the HFEA required that researchers at Newcastle University test PNT on a non-human primate model, which they never did. A research team in Oregon did try PNT on macaque monkeys, but found it to be unsuccessful, with embryos failing early, and thus abandoned PNT. They have shown success using another kind of mitochondria replacement (maternal spindle transfer or MST),  although the monkeys are still young and no further generations have been studied. This knowledge has not deterred Newcastle,or the HFEA, from pushing for human trials of PNT. The HFEA’s response to the failed macaque experiments was to drop the requirement (see page 21) for non human primate testing.

    Misconception 5: There is broad public support for mitochondria replacement techniques.

    The HFEA put out a press statement on March 20 which cited “broad support for permitting mitochondria replacement” as the general conclusion of its public consultation on the techniques. This was consequently repeated by nearly every media report on the consultation.

    Fact: By far the largest number of people (over 1,800) who took part in any of the different “strands” of the HFEA’s consultation were involved with the online open questionnaire. The majority of these participants wrote to say that they disagree with the introduction of either mitochondria replacement technique (PNT or MST.) In its past consultations, the HFEA has presented this strand, as the only portion which is open to everyone, as the most important. In this case, the HFEA is downplaying it.

    For more on the numerous ways in which the HFEA has misrepresented its own data by claiming “broad support” from the public, see this blog post.

    Misconception 6: The genetic contribution of the donor of mitochondrial DNA is inconsequential.

    This is another claim that has been made repeatedly. For example, Doug Turnbull, Professor of Neurology at Newcastle University said, "Mitochondrial genes only help produce mitochondria. They have absolutely no role in any other characteristics.”

    Fact: This statement is quite misleading. It is true that mitochondrial DNA constitute only 37 genes, but that does not mean they do not have significant phenotypic effects. Mitochondrial DNA has an impact on cognition, aging and cancer, adult-onset diabetes and deafness, and interacts consistently with nuclear DNA. Among other things, mitochondrial DNA provides metabolic energy during embryonic development, which clearly has a large impact on phenotype.

    Responding to Turnbull’s claim, New York Medical College Professor of Cell Biology and Anatomy Stuart Newman said:
    If mutations in different mitochondrial genes affect different organs (which they do), how can it possibly be maintained that mitochondrial genes "only help produce mitochondria"? Impairment of mitochondria impairs development – that’s how the diseases are produced. Genetic variation (even within a normal range) leads to phenotypic variation. The inescapable conclusion is that normal variations in mitochondrial genes must have differential effects on developmental outcomes.
    Misconception 7: Mitochondria replacement is just another kind of IVF

    Numerous media accounts have referred to “3-parent IVF” or called mitochondria replacement an “IVF treatment,” and some have compared the initial uncertainty around the safety of IVF to the current uncertainty about the safety of these techniques.

    Fact: There is a critical difference, which Stuart Newman sums up well in The Huffington Post:
    Unlike in vitro fertilization (IVF) which generates embryos from the biological components that evolved to serve this function, the two methods under consideration by the HFEA de- and reconstruct the fertilized egg in radical ways, unprecedented in the history of life.

    Misconception 8: The “slippery slope” argument is overstated; no one wants to modify nuclear DNA.

    If human trials of mitochondria replacement are approved, it would be the first time that any government has authorized genetic changes that would affect future children and their descendants. Such procedures – known as human germline engineering – have been prohibited by dozens of countries because of concerns that they would open the door to a new form of high-tech eugenics, with profound societal consequences.

    Some advocates of mitochondria replacement simply dismiss these concerns, rejecting them as a “slippery slope” argument.

    Fact:  If mitochondria replacement is allowed, there will almost certainly be increased pressure to permit modifying nuclear DNA in the name of preventing diseases. For example, Robin Lovell-Badge, head of developmental genetics at the MRC National Institute for Medical Research, told Wired that there’s no point in worrying about germline modification, but then went on to state,

    I do not argue that germline genetic modification of nuclear genes should never be considered, for example, parents might accept modifications that would protect their child against diseases such as AIDS. However, we do not yet have the technology or knowledge to guarantee that any such genetic alteration would be safe.
    Well, we don’t have the technology or knowledge to guarantee that PNT would be safe either. (In fact, Newcastle University did not submit any published material to the HFEA’s safety review.)

    The reason there has been an international consensus against human germline modification is that it is incredibly hard to draw a line anywhere else. Lovell-Badge proves that point above. If this line is crossed for the prevention of certain kinds of diseases, there will be increased pressure to research and fund other kinds of genetic prevention – in spite of safer alternatives in very nearly every case, as there are with mitochondrial disease.

    And if interest and money begin flowing into development of germline genetic modification, it is naïve to imagine that there would not be fertility clinics willing to offer couples the ability to choose “designer” traits of their liking, and  some who would argue this is simply a matter of reproductive choice.

    But when the facts are presented without misrepresentation, the case for mitochondria replacement – as for other kinds of inheritable genetic modification – is flimsy at best.

    For more information on mitochondria replacement and its implications, see the Center for Genetics and Society’s press statement or this detailed resource page.

    Previously on Biopolitical Times:

    Predicting the IQ of Future People

    Posted by Pete Shanks on May 15th, 2013

    Jason Richwine & Zhao Bowen

    Jason Richwine was forced to resign from the Heritage Foundation by a media storm about his offensive comments on race and IQ. That's remarkable, and perhaps significant, but there are likely more and bigger headlines to come.

    The background in brief: Richwine co-authored a Heritage position paper titled "The Fiscal Cost of Unlawful Immigrants and Amnesty to the U.S. Taxpayer," clearly published to oppose immigration reform.The paper was unwelcome to all but right-wing extremists, for various reasons, and it soon came out that Richwine's 2009 doctoral thesis included such statements as (on p. 66):

    No one knows whether Hispanics will ever reach IQ parity with whites, but the prediction that new Hispanic immigrants will have low-IQ children and grandchildren is difficult to argue against.

    His dissertation proceeded to explore "the proposition that immigration policy should select for IQ" (p. 123). That wasn't explicitly in the Heritage study, but it certainly provided a handy cudgel. The report was released on Monday May 6, his thesis was reported on Wednesday, and he "resigned" on Friday. One of Richwine's mentors was Charles Murray, of The Bell Curve infamy, who promptly tweeted:

    Thank God I was working for Chris DeMuth and AEI, not Jim DeMint and Heritage, when The Bell Curve was published. Integrity. Loyalty. Balls.

    From Murray's perspective, he has a point. For the rest of us, it's actually heartening that such opinions have become toxic. And the dust-up has provoked some insightful commentary (e.g., Ta-Nehisi Coates at The Atlantic, Ari Rabin-Havt at Media Matters, Diego von Vacano at The Monkey Cage).

    However, it's also important to note that "respectable" politicians have always been willing to jettison those that go too far. William Shockley, for instance, was effectively shunned in the 1970s, but Murray and Richard Herrnstein had no trouble putting their work into the public sphere in the 1990s. And indeed the backlash to the backlash may already be starting, as Andrew Sullivan (who, as editor of The New Republic, published excerpts from The Bell Curve) detects "red flags about intellectual freedom."

    Race and IQ may now be a dangerous combination, but the combination of genetics and IQ is definitely on the rise. China's BGI has for a while been running a research project on "genius genes," headed by Zhao Bowen, who claimed in February that it would produce results in three months. That would be now. Well, we don't have the data or the analysis, but we are seeing a burst of publicity.

    An article in the London Times on May 14 (unrelated to the news about Richwine) includes more caveats than previously:

    "The reality is that the genomics of IQ will be much more complex than saying: 'Look, here are the genes for genius.' We will be talking about hundreds, possibly thousands of genes and mutations, each with a tiny effect on IQ. Will someone somewhere want to try to engineer intelligence in embryos? Will someone claim they can make your unborn child more intelligent? Of course they will. But it's not technically possible now and won't be for decades," Zhao says.

    Sure. But the caption to one of the accompanying photos reads:

    If Zhao Bowen discovers the intelligence gene, he may be able to determine a baby's IQ from a blood sample

    A simultaneous article in Nature News says that the project "is slated to begin data analysis in the next few months." It reports that BGI is "halfway through its sequencing" but the rest of the work might take as long as a year. It also includes a noteworthy comment from Harvard geneticist Daniel MacArthur:

    If they think they're likely to get much useful data out of this study, they're almost certainly wrong.

    That's likely true—but no real reason for comfort. The researchers will find something. And someone will abuse the findings. History tells us that's a given. The fallacy may not be that Hispanics (who, ahem, are a cultural community not a race) are dumb, or Jews (essentially a religious group) are smart, or Asians (a broad geographical set) are good at math, or any such nonsense. But suggesting that this embryo has brilliance while this one does not … that could become a very significant problem.

    Previously on Biopolitical Times:

    “World's First GM Babies Born”: 12-Year-Old Article Continues to Cause Confusion

    Posted by Jessica Cussins on April 25th, 2013

    An undated Daily Mail article that is actually over a decade old continues to spread misinformation about the current state of human genetic modification. In fact, the operations it describes were shut down by the FDA in 2001, and the specific techniques it refers to have been abandoned.

    The article begins with the provocative statement, “The world's first genetically modified humans have been created, it was revealed last night.” There is no date anywhere within it, which has led to a great deal of confusion. Many understandably believe it happened last night given that today’s date shows up at the top of the page.

    It is important to set the record straight and understand this history in context. This significant event made headlines when it happened. BBC News coverage of May 4, 2001 is here: Genetically altered babies born, and the CNN coverage of May 5, 2001 is here: World's first genetically altered babies born.

    These reports, and the Daily Mail article, discuss up to 30 births that followed a process called ooplasmic transfer. Fifteen of these babies were reportedly born at the Institute for Reproductive Medicine and Science of St Barnabas in New Jersey under the guidance of Professor Jacques Cohen in an attempt to help infertile women have a child. Altering the human germline – something he was aware he was doing and in fact made a point of publicizing – was not of great concern to him.

    However, many others were quite concerned. BBC News Online reported,

    Altering the germline is something that the vast majority of scientists deem unethical given the limitations of our knowledge.
    It is illegal to do so in many countries and…
    The [US Government Recombinant DNA Advisory] Committee said that in no circumstances would it consider any request for government funds that would result in modification of the human germline.
    In June 2001 the FDA communicated with the fertility clinics that were attempting ooplasmic transfer and told them to stop, indicating that such protocols would have to be undertaken under Investigational New Drug exemptions. The FDA letters cited concerns regarding the genetic abnormalities found in resulting children (including Turner’s syndrome and Pervasive Developmental Disorder), the lack of oversight, the paucity of safety data, and the resulting permanent changes to the human genome.

    Understanding this history is particularly important right now as the UK contemplates granting the world’s first regulatory approval for a variation of these techniques, mitochondria replacement, which would also modify the human germline. Biopolitical Times (1, 2, 3) and many others (1, 2, 3) have pointed out that mitochondria replacement is unneeded to prevent future children affected by mitochondria disease , would be extraordinarily risky for any resulting children, and would violate widespread legal prohibitions and a globally observed understanding against human germline engineering. 

    Back in 2001 no one would have guessed that the UK would be the country to go against the worldwide consensus against such human experimentation. Lord Robert Winston, Professor of Science and Society and Emeritus Professor of Fertility Studies at Imperial College, told the BBC: “There is no evidence that this technique is worth doing... I am very surprised that it was even carried out at this stage. It would certainly not be allowed in Britain.” Additionally, the Human Fertilisation and Embryology Authority (HFEA), the UK’s regulatory agency for reproductive medical activities, said that it would not license the technique because it involved altering the germline.

    Fast forward 12 years and the HFEA seems to be promoting just this. Last month, it submitted a report about a public consultation it conducted on mitochondria replacement to the UK Parliament, declaring that it found “broad support” for the techniques even though the majority of those who took part in the largest portion were against the techniques. The UK Department of Health must now decide whether to draft regulations for approval by Parliament, which could allow the procedure to move to human clinical trial.

    Despite or perhaps because of the publicity around the current controversy, the old Daily Mail article continues to circulate and lead to commentaries based on the false assumption that this just happened. Just how much confusion has this created? Here are some of the recent re-postings and commentaries based on the 2001 article:
    The hosts of the recent Al Jazeera debate ‘The Baby Blueprint’ were understandably confused about the issue when they noted that they had just learned from an article that 30 genetically modified babies were born last year.

    Misinformation has been a hallmark of the debate around mitochondria replacement. Adding the accurate date to the Daily Mail article could help alleviate some of the confusion. Hopefully this will be remedied soon.

    Previously on Biopolitical Times:

    Experiments with Inheritable Genetic Modification

    Posted by Jessica Cussins on March 13th, 2013

    An important and timely article, “The British Embryo Authority and the Chamber of Eugenics,” appears this week in The Huffington Post. Stuart Newman, Professor of Cell Biology and Anatomy at New York Medical College, discusses the Human Fertilisation and Embryology Authority’s (HFEA) public consultation on the social and ethical considerations of “mitochondria replacement,” and takes the agency to task for entertaining the legality of a procedure that he sees as inherently unsafe and problematic.

    Unlike in vitro fertilization (IVF), which “generates embryos from the biological components that evolved to serve this function,”  mitochondria replacement radically alters an embryo through the introduction of genetic material from a third person, piecing together various parts of cells in novel ways. Newman notes that humans are the product of evolution, not design, and that it is a fundamental misconception to believe that billions of years of complexity could be tweaked with any predictable outcome.

    Furthermore, Newman separates the question of the desirability of avoiding mitochondrial diseases, which affect 1 in 5,000-10,000 people, from a supposed right to have one's own children by any means necessary, and points out that a technique to modify people who do not yet exist should not be conflated with medical treatment for actual sick people.

    The attempt to improve future people is not medicine, however, but a new form of eugenics. In its willingness to risk producing damaged offspring by modifying embryos' genomes, this "correctionist" eugenics goes even beyond the "selectionist" version of the forced sterilization programs for criminals and others considered biologically inferior conducted in the United States and Europe throughout most of the 20th century (and brought to an extreme in Nazi Germany).
    Activities that are clearly covered by the Nuremberg Code prohibiting nonconsensual human experimentation are recast by proponents of gene-altering technologies as within the alleged rights of parents to exert proprietary control over the characteristics of their prospective offspring.
    Why would the HFEA toy with a technology imbued with such problematic implications for individuals and society? Newman concludes with some words of caution:
    The ironic lesson of the new drive toward DNA-based eugenics (of which the mitochondrial replacement techniques would be the thin end of the wedge), is that despite its being the special initiative of an avowedly progressive sector of biomedicine, it actually brings together some of the most regressive strains of traditional and modern society: valuation of people according to their biological characteristics, parental proprietorship, the marauding entrepreneur and evolution denialism.
    The HFEA's members may imagine that they are taking cautious steps toward a genetically brighter future, but in actuality they are drawing on darker forces promoting the misuse of technology with clear potential for individual and social harms.
    Many of the scientists currently working on mitochondria replacement are eager to promote their techniques as safe and ready to move to human clinical trial; a cautionary look, such as this, from notable scientists is thus extremely valuable and timely.

    Previously on Biopolitical Times:

    Meet the New Eugenics, Same as the Old Eugenics

    Posted by Gina Maranto, Biopolitical Times guest contributor on March 4th, 2013

    The unfortunate truth is that discredited ideas never do die, they just rise again in slightly altered forms—witness eugenics.  Despite the horrors perpetuated in its name, including forced sterilization and the Holocaust, the eugenic impulse is with us still. One of the forms it takes is schemes for “improving” offspring through the selection and manipulation of embryos.

    In the last year or so, one neo-eugenic advocate in particular has been garnering media attention.  He’s Julian Savulescu, holder of an array of titles, including an endowed chair and directorship of a center at the University of Oxford funded by the Uehiro Foundation on Ethics and Education.

    Savulescu also edits the Journal of Medical Ethics, which affords him significant influence in guiding academic discourse and research in the field. The theme of the journal’s February 2013 issue is “the biomedical enhancement of moral status,” a project that would surely count as eugenic in nature.

    Writing about himself in third person in his online CV, Savulescu lays claim to the vanguard of neo-eugenics, proclaiming that

    For the last 10 years, through a series of publications (4 monographs, 1 special journal issue, 29 book chapters, 45 articles), Savulescu has led the debate on the ethics of genetic selection and human enhancement.
    Not one to hide his light under a bushel, he goes on to tout his statistics: He grants top spot in his list of publications to a 2001 Bioethics article, “Procreative Beneficence: Why We Should Select the Best Children,” adding the gloss
    27 articles responding to it, 14 exclusively. Landmark article arguing selection of children is not only permissible, but morally desirable. Introduced novel concept of Procreative Beneficence (cited by 137 – high citations are uncommon in the Humanities). 5th Highest Accessed Bioethics article 2010.
    Francis Galton would be proud.

    Read more…

    Selling the Story: Down Syndrome, Fetal Gene Testing, and The Today Show

    Posted by George Estreich, Biopolitical Times guest contributor on February 28th, 2013

    A recent episode of The Today Show, on which I first commented here, profiles an expectant couple, Jason and Robin Vosler, who tell the audience about the results of their prenatal test on air. They explain that their fetus does not have Down syndrome: “We’re safe,” Ms. Vosler said. Host Matt Lauer then reveals to them something they hadn’t known – that their fetus is male.

    Though nominally a human interest story, the segment was functionally an infomercial for Sequenom’s MaterniT21Plus, one of the new noninvasive prenatal tests (NIPT) for Down syndrome and other chromosomal conditions. The couple testified to the test’s value, as did NBC’s Chief Medical Editor, the woman’s OB-GYN, and the Chief Medical Officer of Sequenom. No competing test was mentioned, and MaterniT21Plus was compared favorably to invasive diagnostic tests (amniocentesis and chorionic villi sampling).

    In my previous blog post, I discussed the conflicted view our society holds of Down syndrome and disability. In this one, I want to consider several key issues: the way NIPT is presented in the diagnostic situation; the way medical authority is used, or misused, to sell the technology to both patients and the public; the question of sex selection; and the challenge of how to respond publicly to these problems.

    For years now, parents have advocated for a genuinely balanced approach to the presentation of Down syndrome, whether in prenatal or postnatal contexts. That approach would neither shy away from potential complications, nor frame a child with Down syndrome as an avoidable mistake.

    Read more…

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    A Call for International Prohibition of Forced Genital-Normalizing Surgery and Sterilization

    Posted by Jessica Cussins on February 21st, 2013

    The United Nations Special Rapporteur on Torture (SRT) issued a report this month about practices that are justified as health care, but that actually constitute cruel, inhuman or degrading treatment. The report breaks new ground with its acknowledgment that torture and human rights violations can take place within medical settings, that it is not merely a historical problem, and that the LGBTQI community is often targeted for such abuses.

    Section 88 of the 23-page report reads,

    The Special Rapporteur calls upon all States to repeal any law allowing intrusive and irreversible treatments, including forced genital-normalizing surgery, involuntary sterilization, unethical experimentation, medical display, “reparative therapies” or “conversion therapies”, when enforced or administered without the free and informed consent of the person concerned. He also calls upon them to outlaw forced or coerced sterilization in all circumstances and provide special protection to individuals belonging to marginalized groups.
    Forced sterilization has previously been recognized as a human rights violation that most severely affects women from marginalized populations. The Open Society Institute’s (OSI) 2011 report, Against Her Will: Forced and Coerced Sterilization of Women Worldwide, has been an invaluable resource in that effort. It specifically brought attention to the coerced sterilizations of Roma women, women living with HIV, and women with disabilities, and noted that medical personnel are rarely held accountable for these human rights abuses. OSI’s publication helped inform the SRT’s report on all of these groups and is referenced throughout.

    The recognition that transgender and intersex people are also disproportionately targeted for coerced sterilizations has previously received less attention and is an important addition to the SRT’s new report. The inclusion of a transgender perspective may well be thanks to Micah Grzywnowicz, an activist who has been fighting against the human rights abuses of transgender people for years. Sex reassignment surgery and sterilization remain requirements for legal gender recognition in most countries around the world today (including 20 American states and 29 European countries).

    The inclusion of people with intersex conditions in the SRT’s report is due in large part to Advocates for Informed Choice (AIC), an organization that fights for the civil rights of children born with variations of sex anatomy. Intersex children are often subjected to involuntary genital-normalizing surgery and sterilization without their informed consent in an attempt to "fix" their sex. AIC was thrilled to see this practice recognized as a human rights abuse in the final report, and has high hopes for what may come next.
    This is a very significant development. The SRT is an influential voice in setting international human rights norms, and governments around the world will look to this report in creating their own laws and policies.
    Both AIC Executive Director Anne Tamar-Mattis and Micah Grzywnowicz will attend the UN Human Rights Council in Geneva in early March to continue to educate human rights officials on the abuses that the LGBTQI community faces around the world.

    A lack of conformity to traditional gender norms should not be grounds for dehumanizing treatment. Though the mere existence of this report does not ensure that  forced genital normalizing surgeries and sterilizations will end globally, the setting of a new international standard is important. It provides a valuable tool for activists, and will increasingly pressure states to honor the human rights of all of their citizens.

    Previously on Biopolitical Times:

    •    Human Rights and Sweden’s Repeal of Required Sterilization for Transgender People
    •    Eugenics in California: A Legacy of the Past?
    •    Tackling the International Trafficking of Organs, Tissues and Cells
    •    Will the UN revisit cloning?

    "Genius Genes" to be Named in Three Months, Says Chinese "Wunderkind"

    Posted by Pete Shanks on February 20th, 2013

    Zhao Bowen

    BGI, the Chinese genome-sequencing behemoth, has been attracting attention from feature writers over the last couple of weeks (MIT Technology Review, Business Week, Financial Times). That's only going to get more intense, it seems, as BGI delves deeper into the long-standing controversy about inherited intelligence. A Wall Street Journal article on February 15th, by Gautam Naik, was headlined:

    A Genetic Code for Genius?

    with the subhead:

    In China, a research project aims to find the roots of intelligence in our DNA; searching for the supersmart

    The project is being run by Zhao Bowen, described in the first sentence of the WSJ story as "a 20-year-old wunderkind." But it's misleading to think of it as a purely Chinese effort. MIT Technology Review describes BGI as "the enabler of other people's ideas," with this as a major example. BGI is doing the sequencing and genetic comparison, and picking up half the tab, with a hefty contribution from the Shenzhen government, but the project was conceived by Stephen Hsu, now of Michigan State, and substantially relies on samples gathered by Robert Plomin, of King's College, London.

    Hsu has been discussing genes and intelligence for several years, since he was a physics professor at the University of Oregon; we gave him some "mild ridicule" in 2011, noted his connection with BGI and warned that we should keep an eye on this. He made no bones about his desire to identify the alleles for intelligence, select for them, and work on "possible near term genetic engineering for intelligence."

    Plomin has been working on IQ for decades. As long ago as 1976, he published an letter on "Heritability of IQ" in Science, responding (as did many others) to M.W. Feldman and R.C. Lewontin. In 1994, he and others claimed to have found "DNA markers associated with high versus low IQ" and "the genetic basis of complex human behaviors." (A 2010 survey, however, found there had been no "reliably reproducible contributions from individual genes"). In the same year, he was also one of the signatories of the Wall Street Journal op-ed "Mainstream Science on Intelligence," which weighed in on the Bell Curve controversy, essentially supporting the book and its inflammatory suggestions about the "intelligence gap" between racial groups in U.S. society.

    In 1998, Plomin claimed to have found an intelligence gene, though admitting it only accounted for "about 2 percent of the variance, or 4 I.Q. points." In 2000, he was leading a research team that c