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
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.
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.
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.
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.
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.
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.
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 diseasebecausein 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 inOregon 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 theydisagree 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.
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.
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.
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.
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.
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.
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.
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.
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.
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 Reviewdescribes 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 Journalop-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 claimed to be "homing in on the genes for genius." Since then he seems to have been frustrated by the "missing heritability" problem — the failure to find genes that explain inheritance of specific attributes. (GeneWatch published a useful survey of his career in November 2011.) He continues to work on twin studies and supplied blood samples of high-IQ people to BGI.
The concept of general intelligence (g) itself has been for years, and remains, intensely controversial, as indeed are twin studies. Moreover, the search for the supposed genetic basis of complex human behaviors keeps coming up dry. People do, however, keep looking, as the new book Genetic Explanations: Sense and Nonsense (Harvard University Press, 2013) examines in detail. Jeremy Gruber, who edited the book with Sheldon Krimsky, told the Wall Street Journal that there are real dangers in this kind of approach to investigating intelligence, which has been used in the past
to target particular racial groups or individuals and delegitimize them. I'd be very concerned that the reductionist and deterministic trends that still are very much present in the world of genetics would come to the fore in a project like this.
Zhao Bowen, however, is undaunted. He's been working on this since 2010, when he was 17; his plan then was to sequence the genes of 1000 of his highest-achieving classmates. That didn't come off, but connecting with Hsu and Plomin must have been a dream come true. His team is now comparing the genomes of 2200 high-IQ people with several thousand random people, and he seems to be very confident:
"The genetic basis of intelligence has been ignored for a very long time," says Mr. Zhao. "Our data will be ready in three months' time."
Whatever they find is all too likely to trigger a flurry of ill-informed headlines about the genes of geniuses and the limitations of the rest of us. This could even lead to a new round of advocacy for eugenics, whether in a state-sponsored or strictly commercial implementation. We'd better be ready.
After five years of denials, Israeli government officials have admitted to targeting Ethiopian Jewish immigrant women with long-acting contraceptive injections without their consent. Most of the women were either coerced into accepting the Depo Provera injections while living in Israeli-run transit camps in Ethiopia, or were unaware that the injections produced temporary sterilization.
This controversy first surfaced in 2008, when Sebba Reuven interviewed 35 Ethiopian women awaiting immigration to Israel. Some of their stories were included in a report by Israeli investigative journalist Gal Gabbay that aired several weeks ago on Israeli Educational Television. One Ethiopian woman explained:
We said we won’t have the shot. They told us, “if you don’t you won’t go to Israel…you won’t get aid or medical care.” We were afraid…We didn’t have a choice. Without them and their aid we couldn’t leave there. So we accepted the injection. It was only with their permission that we were allowed to leave.
After arriving in Israel, the Ethiopian immigrants still received Depo Provera in disproportionate numbers in the HMOs providing health care services. According to a report by Hedva Eyal at Isha L’Isha, a feminist organization in Haifa, among the 4833 Israeli women injected with Depo Provera between 2005 and 2008, 57% were of Ethiopian origin—yet Ethiopians comprise less than 2% of the population. Over the past 10 years, Ethiopians in Israel have experienced a 50% decline in birthrate.
Women’s groups in Israel were alerted to the situation in 2008, when Rachel Mangoli, who runs a day care center for 120 Ethiopian children in a suburb of Tel Aviv with a large Ethiopian community, observed that she had received only one new child in the previous three years. According to Mangoli:
I started to think about how strange the situation was after I had to send back donated baby clothes because there was no one in the community to give them to.
In 2008, when queried about the discrepancy between Depo Provera use among Ethiopians and other groups, Israeli Health Minister Yaacov Ben Yezri reportedly explained that Ethiopian women had a “cultural preference” for contraceptive injection. However, World Health Organization reports on contraceptive use in Ethiopia reveal that this is not the case; in fact, three-quarters of women in Ethiopia using birth control choose the contraceptive pill. Ethiopian-born social worker Mekonen-Dego told the Los Angeles Times that “the suggestion Ethiopian women can’t be trusted with responsibility for their own health is outrageous.”
Haaretz reported this week that Health Ministry Director General Prof. Ron Gamzu has now ordered four health maintenance organizations to discontinue prescriptions of Depo Provera for women of Ethiopian origin if “for any reason there is concern that they might not understand the ramifications of the treatment.” Sharona Eliahu Chai, a lawyer for the Association of Civil Rights in Israel (ACRI), whose complaint prompted Gamzu’s response, said:
Findings from investigations into the use of Depo Provera are extremely worrisome, raising concerns of harmful health policies with racist implications in violation of medical ethics.
The use of Depo Provera among Ethiopian immigrants is particularly disturbing because its side effects—including depression, dizziness, abdominal pain, loss of bone density, and possibly increased breast and cervical cancer rates—are well-known. To impose it without proper consent amounts to a potentially harmful policy of compulsory contraception.
The Depo Provera scandal takes place against the background of the Israeli government pro-natalist policies that provide incentives for other (fairer) Jewish women to produce more children, in part as a demographic race with Palestinians. Unfortunately, this contradictory approach to reproductive policy is in keeping with the social and ethnic stratification of Israeli society. In The Chosen Body (2002), Meira Weiss describes Israeli “body politics” that put white Ashkenazi (European Jewish) male bodies at the top of the social hierarchy. In descending order, they are followed by Mizrahi (Middle Eastern Jews), and then by Ethiopian Jews. Only Israeli Arabs, non-Jewish immigrants, and Palestinians in the Occupied Palestinian Territories rank lower.
The coerced prescription of Depo Provera to Ethiopian Jews also stems from broader dynamics in Israeli society. These include lingering questions voiced by a number of Ultra Orthodox Israeli rabbis and others about whether Ethiopian immigrants are actually Jewish; concern that African immigrants in general are a drain on the system and will, as Prime Minister Benjamin Netanyahu put it, “threaten our existence as a Jewish and democratic state”; and widespread discrimination against Ethiopian Jews, who often live in marginalized and impoverished communities and who face social barriers to equal access to jobs, education and housing.
World-wide, the struggle for reproductive and social justice demands attention. The Israeli Health Ministry’s revised directive about the use Depo Provera is a small step in the right direction. However, the discriminatory policies of the Israeli government, toward various ethnic and religious groups, require continued scrutiny.
California has a long and deeply troubling history of eugenics that includes the forced sterilization of tens of thousands of men and women. In 2003, the state Senate passed a resolution urging “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.”
Unfortunately, the resolution did not include concrete mechanisms for achieving this important goal, and most Californians still know little or nothing about their state’s eugenic legacies.
A group of California high school students has now started an online petition at Change.org to help turn the resolution’s aspiration into reality. The petition outlines specific and powerful recommendations for teaching the long-ignored history of eugenics in meaningful ways.
The students want the California Board of Education to change the standards for U.S. history textbooks and the language of the California educational code so that curricula on sterilization and eugenics are introduced in public high schools. They offer specific recommendations for the curricula, which include thinking about why eugenics was considered a viable solution to societal problems, looking at different eras of sterilization in the state (including very recent occurrences), thinking about how the history is both intertwined with and separate from the eugenic practices of Nazi Germany, and thinking about the ongoing relevance of eugenics for genetic technology today.
In California as elsewhere in the United States, eugenic views and practices were maintained by respected medical practitioners in the name of morality and science. The students recognize that this framework is particularly dangerous because of its power to affect opinion and justify institutionalized discrimination; they also recognize that this thinking is not limited to the past. They quote State Attorney General Bill Lockyer, who was forthright about the matter in an official 2003 letter acknowledging California’s eugenic history.
“At the Dawn of an era when cloning and genetic engineering offer both great promise and great peril, we must learn from our history, teach our children about our past and be mindful of our future.”
The students’ effort to change the state’s official history curricula and textbooks may seem daunting, but the passage in 2011 of California’s FAIR (Fair, Accurate, Inclusive, Respectful) Education Act – which mandates the inclusion of contributions of people with disabilities and lesbian, gay, bisexual, and transgender people in social studies curricula and textbooks – has set an important precedent. The FAIR Education Act demonstrates that what kids are taught can be changed to more closely reflect the truth, and the effort to spread awareness about eugenics can follow a similar model. California public high schools should be required to use U.S. history textbooks that don’t ignore these issues.
Eugenics is unfortunately not merely a concern for the history books. Shockingly, forced sterilizations have occurred in very recent years in some California prisons. And potential misuses of new genetic and reproductive technologies raise concerns about a “new eugenics.” Learning from the mistakes of the past, and acknowledging the harm they are causing in the present, is the best way to avoid repeating injustices down the road.
Now seems to be a ripe moment for addressing the legacies of eugenics in the U.S. There are several ongoing efforts to offer compensation to victims of forced sterilizations around the country, including the recent bills in Virginia and North Carolina. In California however, where none of the estimated 20,000 victims of state-sponsored sterilization are still alive, educational reform could be the most effective way to address these past wrongs.
Californians deserve to know the truth about their state’s – and their country’s – role in the history of eugenics. The victims of forced sterilization deserve to have their story told. This is a critical moment to learn about the complexities and possibilities of justice, equality, and human rights.
The student petition is one of the most uplifting and creative ways to grapple with this painful history that I have seen. Please consider helping these students’ effort and sign the petition today.
One of many protests against forced sterilization in Sweden, Stockholm Pride Parade, 2010
The law in Sweden that for more than 30 years had required transgender people to undergo sterilization before they could be legally recognized as another gender has been deemed unconstitutional and in violation of the European Convention on Human Rights.
A year ago, the government was unable to repeal the law because a small conservative group managed to block the effort. International human rights activists fought back, gaining media attention and putting significant pressure on the country. The European Council’s Human Rights Commissioner declared that the law did in fact violate human rights, and an amendment was proposed by the Swedish National Board of Health and Welfare.
Finnish center-right MEP Sirpa Pietikäinen told the European Parliament LGBT Intergroup, “This isn’t about LGBT rights; it’s about human rights and torture, cruel, inhuman and degrading treatment.”
Green MEP from Spain, Raül Romeva i Rueda, added: “The government’s decision is rather surprising: forcibly sterilising transgender people is recognised as inhumane across the political spectrum. It’s barbaric, outdated and highly unnecessary—not to mention against Sweden’s human rights commitments.”
Amanda Brihed, who underwent forced sterilization when she had male-to-female realignment, has become a public advocate for transgender rights. In a recent interview with Vice, she described the social environment transgender people face in Sweden.
“We still aren't considered to be human beings. Our protection against discrimination, threats, violence and hate-crimes is still very limited. We're not even protected in labor laws. Forced sterilization is just the tip of an iceberg.”
Brihed is one of more than 500 people who were sterilized under Sweden’s law; she is part of the class action and is hoping to receive some compensation from the state. Ulrika Westerlund, head of the Swedish Federation for Lesbian, Gay, Bisexual and Transgender Rights, has suggested that 200,000 kronor ($31,000) per person would be an acceptable amount. In 1999, Sweden offered 175,000 kroner to those who had been forcibly sterilized under a eugenics program that wasn’t abolished until 1996.
In the United States, though sterilization is not required before gender reassignment surgery, efforts to monetarily compensate victims of state-sponsored eugenic sterilization have thus far hit dead ends. Are there lessons to be learned from the successes in Sweden?
The fight for humane treatment of a minority group must walk the fine line of simultaneously voicing the concern of one specific group (thus outlining the boundaries of what constitutes that group) while making the case that there is no fundamental difference between that group and the human community at large; that they are just as deserving of human rights as others. The protests in Sweden and around the world against the dehumanization of transgender people have walked this line with deft skill.
The new ruling in Sweden is a reminder of the power of the human rights framework. The United States has historically not given much weight to international human rights conventions and has lagged on establishing guidelines for new technologies, medicines, and practices.
George Church hit a nerve when he recently discussed re-creating Neanderthals with an "adventurous human female" surrogate, in Der Spiegel. The media attention rapidly became fierce, with dozens of outlets carrying the remarks. Yesterday, Church told the Boston Herald that the whole kerfuffle was based on "poor translation."
As for cloning a Neanderthal, he said, "I'm certainly not advocating it
… I'm saying, if it is technically possible someday, we need to start
talking about it today."
It's good to hear Church disavowing the idea of using genetic
engineering, synthetic biology and human surrogates to create a
Neanderthal clone baby, at least for the time being. But it's
disingenuous of him to shift all the blame onto the translation process.
The phrase that clearly got the most attention was "adventurous female
human" — and that comes straight from the prologue of his own recent book, Regenesis: How Synthetic Biology Will Reinvent Nature and Ourselves (co-authored with Ed Regis, published in October 2012):
If society becomes comfortable with cloning and sees value in
true human diversity, then the whole Neanderthal creature itself could
be cloned by a surrogate mother chimp — or by an extremely adventurous
Is Church personally looking for a human surrogate to gestate a
Neanderthal clone, right this minute? No. Is he willing to openly
advocate for the scenario that he describes in some technical detail?
Not forthrightly, and both in his book and in the interview that sparked
the recent furor, he includes "ifs" and caveats. Does he think that the
process will be technically feasible in the foreseeable future?
Emphatically yes. He's been talking about this and similar projects for
several years. For example:
Dr. Church said there might be an alternative approach that would
"alarm a minimal number of people." The workaround would be to modify
not a human genome but that of the chimpanzee, which is some 98 percent
similar to that of people. The chimp's genome would be progressively
modified until close enough to that of Neanderthals, and the embryo
brought to term in a chimpanzee.
"The big issue would be whether enough people felt that a
chimp-Neanderthal hybrid would be acceptable, and that would be broadly
discussed before anyone started to work on it," Dr. Church said.
Is there a gene for mass murder? Of course not. But within a week of the December 14 elementary school massacre in Newtown, state authorities were planning to do genetic tests on the tissues of the man who committed the horrific crime and then killed himself. There are real risks involved in this, and few — if any — scientific merits.
Lanza's DNA will be analysed not because it will be useful but because it can be analysed. The ease of DNA sequencing will lead to a dangerous temptation to focus on minor, even spurious, genetic correlations at the expense of non-genetic factors that are more influential.
But aside from being a distraction, can sequencing Lanza's genes do any harm? Why not give them a look?
As a society, we have a record of attributing criminal tendencies to biological traits, and basing social policy on the results. Remember phrenology? Remember eugenics? Another false scientific theory that is particularly relevant is the "criminal chromosome." The 1961 discovery that some men have two Y chromosomes led to the suggestion that they must be doubly male — "super male" — and therefore prone to aggression. In 1968 the New York Times and other major publications jumped on this bandwagon. Social consequences soon followed:
Newborn screening programs were set up in several states to identify baby boys who were XYY.
In 1970, President Richard Nixon's personal medical advisor proposed testing the genes of every American child between ages six and eight, in order to identify those with "criminal potential." He suggested that "hard-core 6-year-old" children be sent to "camps" where they could learn to be "good social animals."
In the same year, the eminent geneticist H. Bentley Glass told the annual meeting of the American Association for the Advancement of Science that he looked forward to the time when pregnant women would be required by the government to abort XYY "sex deviants."
A psychologist at Johns Hopkins Hospital tried to treat 13 XYY boys and men with behavior problems by chemical castration. It didn't work, but its side effects included weight gain — and suicide.
Most of this happened after there was expert testimony and published research showing — correctly — that XYY men were not more likely to be criminal than XY men.
In the wake of a tragedy like the Newtown massacre, it may be understandable to grasp at simple explanations, and to fall prey to spurious correlations. But to think that genes will tell us who to fear is a serious misunderstanding of genetic science. And history tells us that such erroneous ideas are extremely likely to lead to demonizing some group of people, whether identified by the shape of their head or the color of their skin or the religion of their ancestors — or the particular configuration of their DNA.
The Center for Genetics and Society has sent a letter strongly recommending against changing the United Kingdom law that – like those in dozens of other countries – prohibits procedures that would alter the genes we pass on to our children. Please consider adding your voice to this effort here.
A research team at the United Kingdom’s Newcastle University is working on techniques that produce human eggs containing genetic material from two women, and using them to create human embryos – and potentially children – with DNA from three parents. Children born after such “mitochondrial replacement” procedures would pass these genetic changes to their children and all subsequent generations.
Testing the procedure in humans is currently illegal in the UK because it would constitute inheritable genetic modification – that is, it would irreversibly alter the human germline. Over 40 countries prohibit human germline engineering because of its profound social and ethical consequences, but the Newcastle researchers are eager to change the UK law so that they can bring their technique to clinical trial.
Mitochondrial replacement would not alter genes in the nucleus. But the prohibition against human germline engineering represents a critical line in the sand. If the Newcastle proposal to alter mitochondrial genes is approved, we will have crossed that line; it will be harder to argue against other inheritable genetic modifications in the future.
Like the research team from Oregon Health and Science University whose research was recently in the headlines, the Newcastle scientists stress that their procedures are worthwhile because they would enable women with unhealthy mitochondria to have a (mostly) genetically related child without mitochondrial disease. Inherited disease caused by mitochondrial DNA is relatively rare, affecting about 1 in 5,000-10,000 births. Women at risk of having an affected child have several other (far less experimental) options available to them, so these extreme procedures would be considered only in a very small number of cases. Because mitochondrial DNA and nuclear DNA interact with each other consistently and in complex ways that are imperfectly understood, the health risks to any future children created using these procedures would be very large. And these future children would obviously be unable to give their consent.
The Human Fertilization and Embryology Authority (HFEA) ruled last year that a minimum number of further tests would be required before the safety of mitochondrial replacement in humans could be assessed (section 5.4). Even though these tests have not yetbeen completed, the HFEA is moving forward in an effort to gauge the public’s point of view on the controversial technology. They have launched a public consultation to debate the ethical and social implications of the two novel technologies under discussion: pronuclear transfer (PNT) and maternal spindle transfer (MST).
HFEA’s consultation website has information on the science behind the new techniques being proposed and on various ethical concerns. The results of the consultation will be passed on to the Secretary of State for Health in the UK who will make the next decision as to whether these technologies can move to clinical trial in humans.
Please voice your thoughts or concerns on these issues by submitting them to the HFEA’s public consultation by December 7. For more information on the many social and ethical implications of mitochondrial transfer, please see the letter the Center for Genetics and Society has submitted to the Chair of the HFEA and to the Secretary of State for Health in the UK here. Please also check back for updated information on our website.
Posted by George Estreich, Biopolitical Times guest contributor on November 13th, 2012
One of the many mini-scandals in the recent Presidential election erupted when Ann Coulter tweeted a reference to President Obama as a “retard.” As the father of a sixth grader with Down syndrome, I found the tweet simultaneously sickening and reassuring. Sickening, because of the ubiquity of the word; reassuring, because of the pushback. Coulter clearly assumed that her use of the word would be shocking enough to generate attention, but not shocking enough to incur any cost. She was clearly wrong.
On disability as on many other issues, our mores are changing with unbelievable speed. What was acceptable last year is less so this year, and taboo next year. Most heartening of all after Coulter’s blunder was the public reply made by John Franklin Stephens:
I’m a 30 year old man with Down syndrome who has struggled with the public’s perception that an intellectual disability means that I am dumb and shallow. I am not either of those things, but I do process information more slowly than the rest of you. In fact it has taken me all day to figure out how to respond to your use of the R-word last night…
Well, Ms. Coulter, you, and society, need to learn that being compared to people like me should be considered a badge of honor.
No one overcomes more than we do and still loves life so much.
Come join us someday at Special Olympics. See if you can walk away with your heart unchanged.
A friend you haven’t made yet, John Franklin Stephens Global Messenger
In a world where people with disabilities have made such strides, what are we to make of the spate of new prenatal tests that claim to identify fetuses with chromosomal conditions early in pregnancy? There is no easy answer, but it is hard to deny the tension between their implicit message and the one delivered by Mr. Stephens.
Selling at Sequenom
One of these tests is made and marketed by a company called Sequenom.
Posted by George Estreich, Biopolitical Times guest contributor on October 17th, 2012
Since I started researching and writing about the new fetal gene tests that can detect Down syndrome and other disorders from a maternal blood sample early in pregnancy, the ads for Sequenom's MaterniT21 have been appearing regularly on my computer screen. Whatever you think about Sequenom, they have their online marketing together.
I'm writing about the new fetal gene tests not because I oppose them in some blanket way, but because I think that a robust conversation is necessary if our medical advances are to help us. In that conversation, we need to talk not only in narrow terms about the relative efficacy of these tests, but about the assumptions and wishes to which they appeal, the vision of health they present, and the broader social consequences of that vision.
And because the tests in question are products, it’s worth looking at the way these products are sold. The companies know this: their websites are slick, expensive-looking, carefully worded. These are acts of persuasion, subordinate to the goal of making a profit; and whether we like it or not, they are a part of our society's conversation about biomedicine, not outside it.
So in the spirit of continuing that conversation, I'll begin with a response to my last post, where I took issue with the idea that "90% of all fetuses with Down syndrome are aborted." I wrote that in fact 90% of all fetuses positively diagnosed are aborted. However, as I was quickly informed, even in the case of a positive diagnosis, the number of terminations ranges widely, from 50 to 90%, depending on the sample. These points were offered as part of a spirited Facebook discussion among bloggers, and though I (weakly) protested that the 50-to-90-percent thing was actually a figure I linked to, I accept the correction.
The numbers matter not only for the obvious reason that our deliberations should be based on the best data available, but also because they suggest the complexity of the situation. The 90% figure – whether claimed for all fetuses, or all fetuses diagnosed – implies a solid consensus, a slam dunk, almost like a recommendation. 67% is something else: it suggests a process of deliberation (as does the widespread refusal of amniocentesis, which only 2% of women currently use). By extension, it also suggests that a test may not automatically result in “peace of mind.”
It’s also important to realize that not all prenatally identifiable conditions are the same, and that prospective parents do not react the same way. These are not merely decisions about biology, but about values. So with Tay-Sachs disease, for example, there is far greater agreement among prospective parents about the need for prenatal testing and selective abortion.
This is unsurprising: Tay-Sachs is not only invariably fatal and incompatible with long life, but it is inheritable within a relatively small community. That means that there is likely to be shared experience of the disease, and an awareness of its possibility. Down syndrome, however, except in the very rare case of translocation trisomy 21, is not inheritable: it occurs at random. Therefore, it is far less likely that a prospective parent will have direct knowledge of Down syndrome.
What, then, will fill the gap? To ask the larger question: How will the conditions we seek to prevent be portrayed? And, as a corollary: How will the need to sell a product shape the portrait?
Posted by Center for Genetics and Society on September 28th, 2012
A video recording is now available of this public event, held at the University of California at Berkeley School of Law on August 28, 2012.
much of the 20th century, California was at the forefront of eugenic
ideology and practices in the United States, and holds the dubious
distinction of being the state with the highest number of eugenic
sterilizations performed under the authority of law – some 20,000
procedures between 1909 and the mid-1950s. Coerced sterilizations
continued in public hospitals into the 1970s, and it has recently come
to light that in very recent years, women prisoners in California have
been sterilized without their consent or knowledge. Today, California is
a leader in research and services related to human genomics and
assisted reproductive technologies. Speakers at this public event considered the long history of eugenics in California and explored
continuities and discontinuities in the uses and misuses of genetic
ideas and practices.
Welcome: Dean Christopher Edley, Berkeley School of Law
Moderator: Troy Duster, Chancellor’s Professor and Senior Fellow at the Warren Institute for Law and Social Policy, UC Berkeley
Eugenic Sterilization in California: Stories and Statistics
Miroslava Chávez-García, University of California at Davis and Alexandra Minna Stern, University of Michigan
provide an overview of the patterns of the 20,000 eugenic
sterilizations performed in California state institutions from 1909 to
1979, with close attention to race, gender, class, and diagnosis. We
will also highlight stories of sterilization victims and the ways in
which they attempted to challenge the state's authority to control and
contain their reproductive rights. As we will demonstrate, the process
had a devastating impact on the victims.
¿Más Bebés? (documentary film)
Renee Tajima-Peña, University of California at Santa Cruz; Virginia
Espino, University of California at Santa Cruz, and Kate Trumbull,
The feature-length documentary ¿Más Bebés?
(working title) investigates the history of Mexican American women who
allege they were coercively sterilized at Los Angeles County-USC Medical
Center during the 1960s and 70s. Many spoke no English, and testified
that they were prodded into tubal ligations during active labor. The
sterilizations triggered the 1978 class action lawsuit, Madrigal v.
Quilligan, and a protest campaign that galvanized the Chicana feminist
Eugenics in California Women’s Prisons Today
Kimberly Jeffrey and Courtney Hooks, Justice Now
Justice Now has been working collaboratively with people in
California’s women’s prisons to document how prisons violate the
international right to family and function as a tool of reproductive
oppression. Presenters will place a spotlight on personal experience
with as well as the systemic pattern of destruction of reproductive
capacity of women of color and gender variant people in California
women’s prisons through several state-sanctioned policies, including
forced and coerced sterilizations (e.g. the illegal and routine
sterilization of hundreds of people in prison during labor and
delivery), and other violations of safe motherhood and reproductive
Should We Worry About a New Eugenics?
Marcy Darnovsky, Center for Genetics and Society
fast-developing genetic and reproductive technologies offer significant
benefits, but can also be misused in ways that exacerbate existing
inequalities and create entirely new forms of injustice. California, a
hotbed of eugenic advocacy in the last century, is today a center of
biotechnology research and commercial development and the assisted
reproduction sector, as well as home to some troubling
techno-enthusiastic ideologies. Our efforts to confront California's
eugenic history can help prevent these dynamics from veering toward a
This event was co-sponsored by the Center for Genetics and Society and the UC Berkeley Haas Diversity Research Center, the UC Berkeley School of Law, as well as the Institute for the Study of Societal Issues, American Cultures Center, Disability Studies Program, Disabled Students Program, Center for Reproductive Rights and Justice, and the Center for Race and Gender.
Co-coordinators: Marcy Darnovsky (firstname.lastname@example.org) Alexandra Minna Stern (email@example.com)
Advisory committee: Miroslava Chávez-García, Troy Duster, Tony Platt, Sue Schweik
They look like models from a Cialis ad: healthy, prosperous, white, late thirties or early forties. If you were guessing, you’d say the man was an executive in a nonmedical field, that the wife has a professional degree but scaled her career back for family, and that they drove to the office together in a silver Lexus SUV. His hobby is golf, hers is scrapbooking. You see them over the doctor’s shoulder – he’s a blurred white coat in the foreground – and they look concerned but reassured, as if they have just received good news about a solvable problem. The husband’s arm is positioned supportively behind the woman’s chair. There are no markers of political and religious affiliation: their story is a matter of suggestion and erasure, underpinned by the certain fact of an extra chromosome. In this way, at least, it resembles the story of the condition they are clearly there to prevent.
That condition is Down syndrome, and the product isn’t a pill. It’s Sequenom’s MaterniT21plus, an early-pregnancy test described as “an in-office, noninvasive laboratory-developed test for trisomy 21, 18, and 13.” Perhaps because trisomies 18 and 13 are both rarer and incompatible with long life, only Down syndrome is described below the photograph. It’s a standard description, and it is a more than superficial improvement upon the slanted language, factual errors, and long lists of possible disease features that are fading, but still common, in contemporary descriptions of the condition. In this, the description, like the test itself, is very much of our time: over the past several decades, even as our ability to detect Down syndrome has increased, so has our acceptance of people with the condition, a fact reflected in the way we describe it.
And yet that description, like most descriptions of Down syndrome, has a context and a purpose. As such, it is inflected, ever so lightly, with the negative. The word “risk” (as opposed to, say, the neutral “chance”) appears four times, and in a way which subtly expands the pool of potential consumers: “The risk to have a child with Down syndrome does increase with the mother’s age, but mothers of all ages can have a child with Down syndrome.” “Your doctor may also recommend screening for Down syndrome if you have other risk factors such as a family history of Down syndrome.” The condition being risked, though initially identified as a “variation,” is also associated with “birth defects”; and the sense of risk is amplified by an insistence on randomness: “It is important to know that most cases of Down syndrome are not inherited. In fact, most cases of Down syndrome happen randomly by chance.”
It is, in other words, less a factual document than an act of persuasion. Though it speaks with the bland rhetoric of health and choice, and though it’s subtly done, at root it works the way most advertisements work: it engages our fears, then seeks to allay them. Down syndrome, in the world of the ad, is an abstract world of randomness and risk; MaterniT21plus is the answer.
What, then, is left out?
As ever, the actual lives of people with Down syndrome. It is not reasonable, of course, to ask Sequenom – whose continued profitability depends on the wishes of prospective parents to avoid Down syndrome – to show pictures from the latest Buddy Walk®. However, the likely effect of tests like MaterniT21 is to depopulate the Buddy Walks of the future. This isn’t a matter of evil, or prejudice; it’s just economics, and individual decisions adding up to social change.
It is crucial to note that those individual decisions are not lightly taken. Nor are they as common as is thought. As the writer Amy Julia Becker points out, the frequently-cited statistic that 90% of all fetuses with Down syndrome are aborted is factually incorrect. In fact, around 90% of all fetuses positively diagnosed are aborted – which is to say, women willing to undergo the invasive procedure of amniocentesis, with its small but real risk to the fetus, and to contemplate a second-trimester abortion. And yet the numbers of those with Down syndrome are considerably lower than they would otherwise be.
At present, an estimated 100,000 women a year have prenatal genetic tests. A recent article in Nature reports that the Sequenom test is expected to expand that number as much as thirtyfold – to 3,000,000. It is difficult to imagine that this will not affect the numbers of those with Down syndrome in the world. It is also likely that the widespread use of the test will affect our sense of what Down syndrome is.
For parents, advocates, and people with the condition, Down syndrome is not a mistake or a defect; it is a way of being human. But the very fact of a test, combined with the medical authority behind it, implies a different view. Its focus on whole-chromosome disorders strongly associates Down syndrome with other disorders which are either different, or more severe. More generally, as a prenatal test, it associates Down syndrome with other conditions which can be tested for –which is why, in discussions of prenatal diagnosis and selective abortion, it is common to see Down syndrome lumped in with utterly unlike conditions, including thalassemia, cystic fibrosis, PKU, Tay-Sachs, and Huntington’s disease.
These may seem like specialized concerns: matters for parents of children with Down syndrome like myself, for disability rights activists, and for all those of us miscast as Luddites. In fact, we should all be concerned, because Down syndrome is at the leading edge of prenatal genetic diagnosis – just as it was at the dawn of prenatal (non-genetic) testing. In the age of genomics, whole-chromosome conditions are only the beginning. Our ability to sample fetal DNA from maternal blood means that not only Down syndrome, but before long any condition with a genetic component, any “risk,” can be forecast.
How such advances will affect our understanding of human health remains to be seen, but the questions they raise are far from easy. When everything can be tested for, how will we determine what is pathological, and what is normal? For that matter, what will happen to the troubled idea of “normal” itself? When the interpretive ground is shifting, how will patients interpret complex results? What sense will they make of the avalanche of data, and in a failing health system, who will have the time to help them make that sense? When inheritable conditions are discovered, what obligations, legal and ethical, obtain between the patient, the doctor, and the company selling the test? The presence of difficult questions should not preclude the test’s existence or use: difficult questions are always present. But if the test is to be a genuine benefit to human health, the questions need to be faced.
In its webpage for health professionals, Sequenom describes its product with three adjectives: clear, convenient, compelling. The test is undeniably convenient, and will be compelling for many. Its implications, however, are anything but clear.
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.
Posted by Anna Hamilton, Biopolitical Times Guest Contributor on September 6th, 2012
Julian Savulescu, the Oxford University professor of ethics who has kept busy for a decade or more promoting his vision of “breeding better babies,” has taken his campaign to the UK edition of Reader’s Digest. His short article in the September issue, titled “It’s Our Duty to Have Designer Babies,” casts the bad-boy argument he relishes in a conventional and reassuring tone.
Savulescu’s vision is a genetic pick-and-mix in which parents choose to edit out certain “personality flaws” in order to obtain “ethically better children.”
Fancy a child who’s likely to be altruistic? Then look for a version of the COMT gene. Want them to be faithful and enjoy stable relationships? Avoid a variant of AVPR1A. Steer clear of a certain type of the MA0A gene, too—it’s linked to higher levels of violence in children who often suffer abuse or deprivation.
Indeed, when it comes to screening out personality flaws, such as potential alcoholism, psychopathy and dispositions to violence, you could argue that people have a moral obligation to select ethically better children. They are, after all, less likely to harm themselves and others.
One tired argument that Savulescu marshals is that to order up a future child’s personality and character is no big deal, since we’re already doing similar kinds of selection:
We’re routinely screening embryos and foetuses for conditions such as cystic fibrosis and Down’s syndrome, and there’s little public outcry.
This is an odd statement from a literate person who lives in a country in which a government agency – the Human Fertilization and Embryology Authority – has conducted a number of “public consultation” on controversial matters such as embryo screening, and the media regularly reports on them. And it’s difficult to believe that Savulescu is unaware of the many articles, books and conferences in which disability rights activists have voiced their concerns about prenatal testing. (See, for an early and classic example, The Disability Rights Critique of Prenatal Genetic Testing).
Savulescu takes head on, as from a Rhetoric 101 standpoint he must, the question of whether breeding smarter babies or ethically superior babies should be considered a form of eugenics. He answers that “what was especially objectionable about this [20th-century eugenics] movement was the coercive imposition of a state vision for a healthy population.”
But a new eugenics would be different, he says: “Modern eugenics, from testing for diseases to deciding whether you want a girl or boy, is voluntary.”
Here is where Savulescu’s oscillation between two kinds of language – “choice” and “fancy” on one side, “obligation” and “duty” on the other – becomes especially perplexing, and more than a little problematic. He says that parents should have the choice to select against possible flaws, but also argues that when genetic selection (or genetic engineering) become more widely available, parents will have an obligation to use them to improve society.
How and when does an apparently optional “choice” become an “obligation?” I hate to get all Handmaid’s Tale here, but I cannot help wondering how such an obligation might be enforced. Intense social pressure? Insurance company requirements? Will prospective parents have to assess their reproductive plans to make sure their children will be “ethical” and able to contribute to society?
Given mainstream culture’s past and current attitudes toward a variety of differences and disabilities, it seems likely to me that Savulescu’s vision could lead us to incredibly dark places.
Posted by Mike Beitiks, Biopolitical Times guest contributor on August 17th, 2012
Due to several factors (mostly incredibly poor time management), I have developed a certain scholarly expertise in Internet viral videos over the course of my lifetime.
As such an expert, I can inform you that in the canon of viraldom, there's an entire class of cinéma-vérité videos that companies create to generate buzz for their products. These are staged videos intended to be taken as real, presumably in hopes that the verisimilitude will carry potential customers through the entire advertisement.
Knowing of this advertising technique, when I saw the Mentos-sponsored video promoting Singapore's "National Night," in which the mint company with the tagline "The Freshmaker" encourages Singaporeans to make some fresh babies, I knew such trickery was afoot.
The commercial is a three-minute rap song that combines the Singaporean government's rigid pro-procreation policies with a caliber of pickup lines usually reserved for bachelor party dares. Up until the mid-1980s, Singapore’s eugenic policies entailed actively promoting reproduction only among the nation’s most educated, and providing financial incentives for poor, uneducated parents to undergo sterilization. Singapore has switched gears in recent years and begun to prioritize population growth in any form rather than from only one sector, but a eugenic undertone still remains in policies specifically targeting certain classes.
Mentos’ idea was clearly to make the video shocking enough to be entertaining, but real enough to be confusing. It presents itself as an accompaniment to Singapore’s National Day on August 9, the parade-and-firework celebration of the country’s independence from Malaysia in 1965. It can be assumed that Mentos wanted viewers to question whether Singapore's government was behind the commercial.
Spoiler Alert: The video was not funded by the Singaporean government (if you enter the URL provided in the video, you're taken to Mentos' Facebook page). However, the city-state has been involved in the ad campaign's success. Slate notes that the government's notoriously itchy censorship fingers have uncharacteristically allowed the video to air on TV in the country.
The song lampoons the Singaporean government's notoriously eugenic reproductive policies by over-embracing them. While generally crass, it is legitimately clever at points, subtly skewering the irony in the country's "Merlion" hybrid-animal mascot, vaporizing romance by rhyming "patriotic wife" with "manufacture a life," and likening intercourse to the ever-so-sexy work of a government scholar.
The problem is, where the song is intended as a send-up of Singapore's desperation to raise its birthrate while keeping its bloodlines pure, it falls short. General rule of thumb: If your satire doesn't make its subject at least a little angry, it's not good work. The Singaporean government's complicity demonstrates that the laughs Mentos has popped out are in line with government policy. The song references "National Duty," in several forms suggesting that the ultimate intention of the sex act is to "make a little human that looks like you and me," and explicitly narrows its message's intended audience to "financially secure adults in stable, long-term committed relationships."
In an attempt to be controversial while still pleasing the censors, Mentos has not made a clever viral video as much as it's provided the kind of entertainment to which court jesters used to aspire. The jester is as cheeky as he wants to be while entertaining dinner guests, but when it's all over, he's bowing to the king.
Posted by Center for Genetics and Society on August 15th, 2012
North Carolina historical marker
A free public event was held at the Berkeley Law School on the UC Berkeley campus (105 Boalt Hall) on Tuesday, August 28, 2012 from 12:30 to 2 pm.
For much of the 20th century, California was at the forefront of eugenic ideology and practices in the United States, and holds the dubious distinction of being the state with the highest number of eugenic sterilizations performed under the authority of law – some 20,000 procedures between 1909 and the mid-1950s. Coerced sterilizations continued in public hospitals into the 1970s, and it has recently come to light that in very recent years, women prisoners in California have been sterilized without their consent or knowledge. Today, California is a leader in research and services related to human genomics and assisted reproductive technologies. Speakers at this public event will consider the long history of eugenics in California and explore continuities and discontinuities in the uses and misuses of genetic ideas and practices.
Dean Christopher Edley, Berkeley School of Law, will give opening remarks to welcome attendees.
Eugenic Sterilization in California: Stories and Statistics
Miroslava Chávez-García, University of California at Davis and Alexandra Minna Stern, University of Michigan
We provide an overview of the patterns of the 20,000 eugenic sterilizations performed in California state institutions from 1909 to 1979, with close attention to race, gender, class, and diagnosis. We will also highlight stories of sterilization victims and the ways in which they attempted to challenge the state's authority to control and contain their reproductive rights. As we will demonstrate, the process had a devastating impact on the victims.
¿Más Bebés? (documentary film)
Renee Tajima-Peña, University of California at Santa Cruz; Virginia Espino, University of California at Santa Cruz, and Kate Trumbull, documentary filmmaker
The feature-length documentary ¿Más Bebés? (working title) investigates the history of Mexican American women who allege they were coercively sterilized at Los Angeles County-USC Medical Center during the 1960s and 70s. Many spoke no English, and testified that they were prodded into tubal ligations during active labor. The sterilizations triggered the 1978 class action lawsuit, Madrigal v. Quilligan, and a protest campaign that galvanized the Chicana feminist movement.
Eugenics in California Women’s Prisons Today
Kimberly Jeffrey and Courtney Hooks, Justice Now
Since 2003, Justice Now has been working collaboratively with people in California’s women’s prisons to document how prisons violate the international right to family and function as a tool of reproductive oppression. Presenters will place a spotlight on personal experience with as well as the systemic pattern of destruction of reproductive capacity of women of color and gender variant people in California women’s prisons through several state-sanctioned policies, including forced and coerced sterilizations (e.g. the illegal and routine sterilization of hundreds of people in prison during labor and delivery), and other violations of safe motherhood and reproductive justice.
Should We Worry About a New Eugenics?
Marcy Darnovsky, Center for Genetics and Society
Today's fast-developing genetic and reproductive technologies offer significant benefits, but can also be misused in ways that exacerbate existing inequalities and create entirely new forms of injustice. California, a hotbed of eugenic advocacy in the last century, is today a center of biotechnology research and commercial development and the assisted reproduction sector, as well as home to some troubling techno-enthusiastic ideologies. Our efforts to confront California's eugenic history can help prevent these dynamics from veering toward a new eugenics.
CONTACTS: Susan Schweik, UC Berkeley, firstname.lastname@example.org, Marcy Darnovsky, Center for Genetics and Society, email@example.com
In Virginia and dozens of other states, mental illness, physical disability, criminal behavior, alcoholism, sexual promiscuity, and being an interracial couple were all considered sufficient reasons to take away the ability of men and women to have children. Virginia’s eugenic sterilization law remained active until 1979; by then, over 8,000 people had been forcibly sterilized.
Virginia has made some strides forward in addressing its history, issuing an official apology in 2002. But as in the rest of the country, victims of involuntary sterilization have not seen a dime in reparations, and students rarely see a word about American eugenics in their textbooks.
When the story of eugenics and the fascination with purifying the human race is mentioned, it is told as a history located in and limited to Nazi Germany. But 32 US states had active eugenic sterilization laws for much of the twentieth century, and most have done little to address this injustice.
An effort in North Carolina to offer reparations to living victims of eugenic sterilization looked poised to succeed earlier this year, but was turned down by a cash-strapped Senate. It’s doubtful that Virginia will offer any actual compensation to its living victims, but Hope has asked for “a symbolic payment” from the General Assembly and Governor Bob McDonnell. While hopefully not the end of the state’s efforts, the gesture marks increasing interest by state officials and others in formally addressing this ugly American story.
In 1877, Richard L. Dugdale published a book called The Jukes: A Study of Crime, Pauperism, Disease and Heredity. He built on the work of his mentor, Elisha Harris, and in turn was cited by Francis Galton, in the 1883 book in which he coined the term eugenics.
Dugdale was a reformist, whose description of this degenerate clan pointed to their terrible environment as well as their familial relationship. But the story of the Jukes soon became a morality tale, often linked to Biblical verses (such as Exodus 20:5, Isaiah 65:7, and Jeremiah 16:11) about visiting the sins of the parents on future generations. The story was updated as The Jukes in 1915 by the eugenicist Arthur Estabrook, and became a staple of sermons around the country, often contrasted with the legend of the 18th-century theologian Jonathan Edwards. It influenced the promotion of involuntary state-sponsored sterilization in the U.S. and specifically the Supreme Court decision in Buck vs Bell, which legalized the practice.
Paul Lombardo recently published a masterful summary of this tale in the Journal of Legal Medicine. That's behind a paywall (abstract) but the essence is covered in a USA Todayarticle by Dan Vergano:
"The story is incredibly hateful and lacking in compassion and false," says legal historian Paul Lombardo of Georgia State University in Atlanta. "The story of the Jukes is demonstrably false, and yet people keep repeating it, sometimes knowing it's false."
The standard narrative was debunked by Clarence Darrow in 1925, by Jacob Landman in 1932, and by others. For a start, the pseudonymous Jukes came from 42 families, not all connected. Said Darrow (quoted by Lombardo):
It is the story of the squalid section of every isolated, sterile, rural community and of every poverty-stricken city district.
But the myth of the Jukes would not disappear. In 1960 it remained so well known that the historian Theodore White could use it as shorthand for squalid corruption, and assume that his readers would know what he meant. And in 2000, the televangelist Marilyn Hickey helped to revive it again, and it's become a staple of many Christian websites, as Lombardo details. And this matters a lot, he explains:
Those who parrot the arguments of generational guilt and hereditary taint may be ignorant of their beginnings in eugenic mythologies formulated over a century ago and how they were used to support political campaigns that included the eugenic sterilization movement. But it is still true that contempt for the poor, the diseased, and the powerless remains a part of our current political landscape. And those who revive the parable of the Jukes today sound a clear echo of that most toxic strain of eugenic propaganda.
Lombardo has done us all a service by reminding us of this history. How important a service can be seen in the simplest and least argumentative comment on Vergano's USA Today piece:
Thanks for the article! I was totally unaware of any such laws. It's kind of frightening.
Michael Johnson, the legendary athlete, recently made global headlines for suggesting that black American and Caribbean sprinters have a "superior athletic gene." He noted that all eight sprinters in the 2008 men's Olympic final were descended from slaves, and speculated that this could have contributed to their speed.
Inevitably, the media took his comments a stage further. For example, Fox Sports titled its report, with quotes in the original, although there is no evidence that Johnson exactly said this:
"Slave gene made me run fast"
Johnson still holds the 400m world record, set in 1999, and the third-fastest time ever over 200m (he held both records simultaneously for a decade). Since retiring in 2000, he has proved himself as an extremely articulate commentator on the sport, a "solid gold sports pundit," working mostly for the BBC.
The genetic speculation came in a TV documentary he made for Britain's Channel 4, Michael Johnson: Survival of the Fastest, which included a DNA ancestry test (he's of West African descent, if the analysis is accurate). It was, according to the review in the London Independent, "a cautious film, properly concerned to acknowledge how important culture and personal qualities are in the development of athletic excellence." The Telegraph called it "an excellent — and thoroughly shaming — documentary." As well as genetic speculation, it included some significant introspection:
All my life I believed I became an athlete through my own determination, but it’s impossible to think that being descended from slaves hasn’t left an imprint through the generations.
As a media pro, Johnson should have known that nuance does not translate to tabloid journalism. Moreover, the appalling conditions the program described, for slaves in transit and after arrival in the U.S. and Caribbean, may have left psychological scars down the generations, not to mention the economic and political consequences — but that's not genetic.
If the program said, as reported, that the mortality rate on slave ships was "between 50 and 96 per cent," it was wrong. Some ships were disastrous, but overall the historical record suggests that mortality was about 13% — a number that bespeaks enormous suffering, but too little for a "bottleneck" genetic selection process. Moreover, the suggestion that the subsequent conditions of slavery had some kind of epigenetic effect that made people of West African descent faster is more than a little lacking in scientific evidence.
The intricate developmental relationships between genes and physical environment, not to mention social challenges and opportunities, make simplistic statements about genes not only untenable but worryingly counterproductive to broad-based social, physical and economic development. Johnson brands steroid users "cheats" and returned a relay gold medal when one of his teammates tested positive; he is a man of integrity. He should be proud of his own talent and hard work. He deserves that.
Protest against eugenic
sterilizations, circa 1971
Monetary compensation for North Carolinians who were forcibly sterilized by the state was denied last week by the state Senate. Victims and advocates have been struggling for recognition and compensation for nearly a decade, but despite support from Governor Bev Perdue and a bipartisan majority in the state’s House of Representatives, the Senate denied the $50,000 payments that had been proposed for the 146 living victims who have been verified. (Verification of another 200 is pending.)
Of the 32 US states with eugenic sterilization laws on their books during the twentieth century, North Carolina had one of the most extensive and long-lasting programs. Between 1933 and 1974, it sterilized about 7,600 people who were considered epileptic, “feeble-minded,” or too poor.
But North Carolina was also the first state to offer more than just an apology for these abuses. It set up the Justice for Sterilization Victims Foundation in 2010, and was on track to provide sizeable monetary compensation to those who came forward. The decision by the Senate represents not merely a lack of action, but a step backwards: the Foundation will be forced to close its doors by the end of the month.
There is no way to give back what is taken from those who are forcibly sterilized, or to put a price tag on the loss. Despite the deep disappointment of the decision in North Carolina, let’s hope that the systematic avoidance of America’s eugenic history is a route that is no longer viable.
The skit features a young white man and his pregnant wife, played by another white man. Their doctor asks if they would prefer a baby boy or girl, explaining that their fetus is at the stage at which hormone therapy can influence certain traits. The couple is surprised, but they immediately dive into it, opting for a son because “boys are funnier.” Next on the menu: eye color. After a flip of a coin, they settle on green.
Then the doctor, who is black, asks if they would prefer a white or black child. Their faces fall. They nervously venture that they want the baby to look like them; the doctor says, “So that’s how it’s gonna be, huh?” The parents-to-be become increasingly awkward as they try to avoid offending their doctor, who is also gay and an amputee – traits they are then asked to opt for or against. When they finally emerge from the office, their efforts to achieve political correctness have led to an unanticipated outcome. “We’re gonna have a gay, black, pirate baby,” the wife glumly declares.
The Whitest Kids segment is reminiscent of a scene in another pop culture must-see, the science fiction classic GATTACA, in which a white couple similarly consults with a black doctor about their future child’s traits. These expectant parents have already decided that they want a boy with hazel eyes, dark hair, and fair skin. The doctor raises his eyebrows as he mentions their skin color preference, but nods approvingly and notes the other traits he has taken the liberty to select against, including a propensity for violence or alcoholism. The couple tentatively suggests that perhaps they should leave some things to chance. But they are persuaded by the doctor’s forceful response that “there is enough imperfection in the world already” and that they should give their child “the best chance possible.”
Both of these fictional situations depict expectant parents being pushed into the role of consumers by developments cast as benefits of modern medicine. They seem uneasy as the baby waiting for them suddenly becomes the product of their preferences, but they choose nonetheless. They experience doubt and discomfort about deciding whether to follow or challenge culturally hegemonic assumptions that assign normative value to arbitrary phenotypic traits, but they make the decisions.
The result in Whitest Kids is the inverse of what’s likely if such choices become available; the scene from GATTACA is much more probable. The technical imperative to choose the traits of one’s children would encourage many if not most people to eliminate difference in the name of avoiding “imperfections.”
This prospect is presented as comedic in the first and as science fiction in the second. But what if the option to pre-select the traits of future children were to become a real possibility? As selection technologies become ever more powerful, it will be increasingly important to move beyond the discomfort of the genetic counseling session, to think collectively about whether we really want the power to design our children.
Last week, I flew cross-country to a symposium on synthetic biology organized by the National Academy of Sciences. While much of the symposium was as I expected, I was appalled that a growing number of synthetic biologists seem to support re-engineering future generations of human beings in fundamental and radical ways.
Using synthetic biology techniques to redesign the human germline came up a number of times, with little recognition of the serious ethical problems it would pose. For example, Peter Leadlay, a biologist at the University of Cambridge, remarked:
I’m really interested in nature, but I do not see any problem, and I’m struggling to understand why other people have a problem, with changing the genetic makeup of a human if it is done reflectively, thoughtfully, we have good reason to believe it might work, and it alleviates human suffering. So, I think that it is perfectly proper to do that, and it is just part of what we’ve been doing already for the same reasons.
Remarks like Leadlay’s wouldn’t be so disturbing if they were isolated incidents. But a number of leading synthetic biologists seem to share his view that modifying fundamental aspects of human biology in irreversible ways is “perfectly proper.” Here’s a list of similar statements:
• Drew Endy: “What if we could liberate ourselves from the tyranny of evolution by being able to design our own offspring?” • Craig Venter: “Not too many things excite my imagination as trying to design organisms – even people – for long term space flight, and perhaps colonization of other worlds.” • George Church: “I wouldn't mind being virus-free,” he says with equal parts mirth and earnestness. It may be too late to reengineer all of his own cells to prevent viral infections, but Church doesn't rule out the possibility of rewiring the genome of a human embryo to be virus-proof. • Andrew Hessel: “[P]erhaps it's time to consider a new grand challenge for genetics, one that captures the public interest. I can think of none grander than an international effort to write a human genome. I want to be absolutely clear that I'm talking only about the task of writing a complete 3 billion basepair human genome, correctly organized into 23 chromosomes, and packaged into a nucleus. A technical challenge, validated by showing the synthetic genome is functional if microinjected into a cultured cell. What I'm definitely not suggesting is growing a baby from a synthetic genome. Before we can fly, we need to be able to walk” • JohnJoe McFadden: “But why stop with microbes? It will soon be possible to make entirely novel forms of plants or animals (including man).”
Surely not all synthetic biology researchers share these techno-eugenic dreams. An article by one critic, New York Medical College Professor of Cell Biology and Anatomy Stuart Newman, can be found here. But with only a few exceptions, the eugenic fantasies of leading synthetic biologists have been met so far by a disturbing silence in the scientific community. Here’s hoping that more of their colleagues will speak up to challenge them.
Ross Douthat, the young conservative who replaced Bill Kristol at TheNew York Times in 2009, used his latest column to address the issue of "Eugenics, Past and Future." He made some valuable points, but unfortunately, he was selective in his history, took a gratuitous sideswipe at "liberals" and proceeded to distort the discussion to reinforce his own prejudices.
The top and tail of the column are sensible. Eugenics really was a common belief among the American elite before World War II, and "a story that defies easy stereotypes about progress and enlightenment." Moreover, his conclusion about what modern elites have in common with their grandparents is accurate enough:
First, a relentless desire for mastery and control, not only over our own lives but over the very marrow and sinew of generations yet unborn. And second, a belief in our own fundamental goodness, no matter to what ends our mastery is turned.
Between these two paragraphs, however, Douthat characterizes the older eugenicists as being "often political and social liberals," which is not totally untrue but definitely misleading. The first instigator was a British aristocrat who proposed breeding "men of distinction and women of wealth" to create a gifted race, and proposed replacing blacks in Africa with the supposedly more-capable Chinese. Later enthusiasts included President Hoover, J.P. Morgan, Charles Lindbergh and many other right-wing leaders, some of whom applauded German efforts at racial purification.
Douthat ignores the obviously racist tenor of eugenic thought and asks rhetorically if modern prenatal testing is a sort of "liberal eugenics" (with quotes in his original). Again, this is a distortion, although there are indeed some self-identified liberals with sympathy for free-market eugenics. However, the tendency is more accurately associated with the now old-fashioned sense of "liberal" meaning "libertarian."
Where he goes completely off the rails, however, is his assertion that
Like so many of our debates about reproductive ethics, that question hinges on what one thinks about the moral status of the fetus.
Douthat uses that to invent his own particular straw-person argument about what he sees as a "rigorous pro-choice perspective." For him, there can be no nuance for the opponents of his own hard line. In that, of course, he is quite wrong.
With only slightly more subtlety than most anti-choice advocates, Douthat is pushing a line that uses widely shared concerns about prenatal selection practices to justify restricting or banning abortion. We saw this recently with PRENDA, the so-called Prenatal Nondiscrimination Act, which tries to use sex-selection as a wedge issue to divide progressives and undermine abortion rights. We have seen it in numerous other proposals. But these are excuses, as several recent articles published by RH Reality Check have documented, and as many civil rights groups have stressed.
To Douthat, the horrific abuses done in the name of eugenics should be addressed by elevating the status of embryos, restricting the rights of women, and blaming liberals. We would be better advised to address the eugenic impulse directly, and to confront the sometimes unacknowledged racism, sexism, homophobia and elitism that still haunt our society.
How and why do long-discredited biological explanations of socially-defined race maintain a presence within scientific and medical research? How do misguided research practices and policies lay foundations for technologies, discourses and public understandings that foster biological assumptions about race? Esteemed scholars of genetic technologies and racial justice explore these and many other questions in a new short video by the Center for Genetics and Society, "Race Under the Microscope," featuring Dorothy Roberts, Joseph Graves, Jonathan Kahn, and Osagie Obasogie. We hope that this piece will serve as an educational resource in the larger efforts to reform the dangerous and sloppy ways in which race is being rewritten at the molecular level.
The shocking details are best driven home by the chilling personal narratives of Uzbek women. Many are sterilized without their knowledge during childbirth, and only find out later when they are unable to conceive:
Two weeks after Bakhor came home with her newborn son the joy of the new baby was overshadowed by a growing suspicion that something had gone badly wrong.
"I kept bleeding heavy black lumps, and the pain was unbearable, I thought I had a tumour," the 32-year-old Uzbek says.
It took Bakhor four months to save up money for an ultrasound. She cries as she remembers the result. During the caesarean section, the doctor explained, she had a hysterectomy.
"The doctor said 'you don't have a uterus any more'. He said: 'What do you need it for? Two children is enough for you'," she says.
"On paper, sterilizations should be voluntary, but women don't really get a choice…It's very easy to manipulate a woman, especially if she is poor. You can say that her health will suffer if she has more children. You can tell her that sterilization is best for her. Or you can just do the operation."
"Every year we are presented with a plan. Every doctor is told how many women we are expected to give contraception to; how many women are to be sterilized…There is a quota. My quota is four women a month.
Other quotas are reportedly as high as eight women per week, and doctors may face fines for disobeying.
The chilling news from Uzbekistan is a disturbing highlight in a month of tumultuous news about coercive sterilization. In the UK, the Guardian recently reported that “tens of millions pounds of UK aid money have been spent on a programme that has forcibly sterilised Indian women and men.” In China, human rights activist Chen Guangchen, who angered authorities by exposing state-sponsored forced abortions and sterilizations, escaped from house arrest and reportedly sought refuge in the US Embassy in Beijing, sparking controversy in China and abroad.
On a more positive note, North Carolina last week took a significant step by writing $10.3 million for victims of its former eugenic sterilization campaign into the state budget (which is still pending review). With only a few of the 32 US states that had at one time had eugenic sterilization laws on their books having even apologized for the violations, our own eugenic past lingers to this day.
Fortunately, there has been some vigorous pushback.
Michael Cook at BioEdge has done excellent work following these issues, especially the infanticide question, in a series of posts (1, 2, 3, 4). He also highlighted the racism pill and the proposal to engineer humans to mitigate the effects of climate change. (Disclosure: on other issues, he has acknowledgedBiopolitical Times.) Cook, as usual, remains relatively polite — firm but courteous — in his criticisms. Others are less restrained, but often thought-provoking; see for instance Amanda Pustilnik on racism as a cultural issue.
In particular, Ari Schulman has analyzed, shredded and ridiculed the "moral acuity" of the "after-birth abortion" paper in a tremendous post at The New Atlantis. It's hard to excerpt, since many of the best parts are his reactions to direct quotations from the original paper. Considering the authors’ suggestion that newborns with Down syndrome might place “an unbearable burden on the family and on society as a whole, when the state economically provides for their care,” he asks:
Can you think of any cases before where groups of individuals have been denied rights or killed on the basis that they are not full persons, are disabled, and/or that they are a burden to society?
As he says, the paper is full of "senselessness and sophistry masquerading as rational inquiry." But Schulman goes a step further, and considers the authors' defense against criticisms of their paper, which was essentially that they are simple philosophers, unused to the ways of the world. Specifically:
When we decided to write this article about after-birth abortion we had no idea that our paper would raise such a heated debate.... It was meant to be a pure exercise of logic: if X, then Y.... We do not think anyone should be abused for writing an academic paper on a controversial topic.
Oh, right, says Schulman:
It’s all just about logic and academic freedom and the boldness to ask challenging questions! Why are people getting so bent out of shape!
Just to put peoples’ silly reactions to this paper in context, imagine that instead of the paper making the case for infanticide, it advanced an I’m-just-saying or gee-hey-why-not daring defense of some other practice, like, say ... rape, murder, slavery, or genocide. Actually, I guess I’m tilting the question by using such condemnatory terminology. “Genocide,” for example, should just be called “heritage-selective aggregate after-after-birth abortion,” lest we acknowledge “the best interests of the ones who die.” Anyway, who would dare fail to celebrate such a harmless intellectual exercise?
Who indeed? After all, when Herman Kahn was "thinking the unthinkable" about nuclear warfare, that surely had no effect on nuclear weapons policy in the 1950s and 60s. The continual drumbeat about the technologies involved in cloning mammoths (or even Neandertals) is certainly not intended to encourage such activities. When advocates of genetically re-engineered humans began to discuss how and when post-humans would be created, that was never meant to affect actual policy or the direction of science. No, these are mere academic speculations, with no real-world consequences at all.
The Oxford connection is no coincidence. That's also the base of two of the three authors of the paper about engineering humans as a response to climate change, and where the third used to work. The central figure in these connections is Julian Savulescu (another is the noted transhumanist Nick Bostrom). Savulescu got his inspiration from Peter Singer, who, as Michael Cook has noted, "has become world famous as a theoretician of animal rights and advocate of infanticide for disabled babies." Singer is admittedly often provocative in an interesting way — his "Escalator of Reason" is worth reading — but Savulescu's entrepreneurial approach to academia seems set to metastasize as the Uehiro Center he directs turns out more and more newly minted doctorates. And that could be very dangerous.
Kudos to those pushing back against spurious logic and simplistic utilitarianism. And to end on a somewhat hopeful note, it does seem that bioethics is starting to respond to criticism, with discussions like this one in the Journal of Medical Ethics on the real-world limitations of informed consent. That's a topic with many pitfalls surrounding it, but it's the kind of discussion academia needs to be having. Not ungrounded "thought experiments" about making humans smaller or murdering those who don't fit someone's stereotype.
That frightening techno-eugenic vision is now being “upgraded” for the digital generation. The ideological project of genetically “enhanced” post-humans appears to be reemerging – this time with a synthetic biology twist.
[I]t's time to consider a new grand challenge for genetics, one that captures the public interest. I can think of none grander than an international effort to write a human genome.
Let’s pause and reflect about what Hessel is proposing. Writing a human genome entails nothing less than designing a human being. This would of course be extremely problematic: technical implausibility aside, it’s an inherently eugenic undertaking, which necessarily involves selecting for genetically-encoded traits and deselecting for others. Read in this light, Hessel’s seemingly benign scientific provocation is far from innocent.
Hessel’s weapon of choice for designing a better human is synthetic biology. He hails his hypothetical effort to write a human genome as synthetic biology’s “proof of concept” par excellence, equating building a “better” human with a bizarre technical game:
A technical challenge, validated by showing the synthetic genome is functional if microinjected into a cultured cell.
While Hessel seems to acknowledge the controversial nature of his proposal, he suggests that the any problem it might pose is merely a technical obstacle to be overcome: "What I'm definitely not suggesting is growing a baby from a synthetic genome," he writes. "Before we can fly, we need to be able to walk."
Scratch the surface and Hessel’s point is clear: There is nothing wrong with designing humans; we simply have to work out the technical kinks (“learn to walk”) first.
Elsewhere, Hessel remarks that synthetic humans are not far off: “Synthetic biology advances could see engineered humans being booted up in a few decades.”
Hessel is not alone among synthetic biologists who are subtly or not so subtly retooling the old eugenic dream of genetic engineering.
In a New Yorker article, leading synthetic biologist Drew Endy suggested that it might soon be possible to “liberate ourselves from the tyranny of evolution by being able to design our own offspring.” Just down the road at Harvard, synthetic biology pioneer George Church stated that he “doesn't rule out the possibility of rewiring the genome of a human embryo to be virus-proof.”
While the essential social and moral problems remain the same, the challenges for progressives posed by synthetic biology may exceed those posed by older genetic engineering technologies for at least two reasons, one technical and the other cultural.
First, synthetic biology technologies, though still in their nascence, may become much more powerful tools than older genetic engineering techniques. At least in principle, synthetic biology provides scientists the ability not only to tweak the traits of a bacterium, but to make new ones and design whole genomes. This accelerates and magnifies the dangers already latent in genetic engineering.
Second, synthetic biology has been billed as “genetic engineering for the Facebook generation,” a cool, hip new science targeted towards digitally savvy youth. This new ideology pegs synthetic biology as sleek and edgy artistic “design,” an empowering “DIY movement,” the newest internet fad. Synthetic engineering, writes Hessel, can “all be done with computer software” from “any old coffee shop.” This depoliticizing narrative is a clever way of deflecting the serious ethical and political questions that need to be asked about this extremely dangerous field.
While the prospect of writing the human genome strikes Hessel as all but inevitable – “Eventually, someone has to,” he writes – the future of synthetic biology is in fact still up for grabs. In recent months, synthetic biology has met growing dissent and rising worries from progressive organizations and policy think-tanks alike. Rather than writing the genomes of our children, it’s time for progressives to write an alternative, non-eugenic future and make the case against designer babies and other misuses of powerful technologies that pose grave physical and social threats.
Following a decision in January by the Eugenics Compensation Task Force, North Carolina victims of sterilization are being encouraged to come forward and will hopefully receive $50,000 in compensation (pending approval of Governor Perdue’s budget, which has allotted money for this plan). Of course, no dollar amount can fully compensate what was lost for the 7,600 people who were sterilized between 1929 and 1974. However, North Carolina’s efforts are praiseworthy. So far, the NC Justice for Sterilization Victims Foundation has identified 111 victims and expects the number to further rise.
An editorial in the Winston Salem Journal points out:
If North Carolina compensates victims of its forced sterilization program, it will become a leader in a worldwide justice movement. And it would become the first American state to compensate. That milestone can't come soon enough for North Carolina's victims, who are hurting in body and soul. Some have died waiting for help.
If, as I hope will be the case, other states will follow North Carolina’s lead, what state will be next to follow suit? Recent coverage by CNN’s Elizabeth Cohen and Anderson Cooper suggests that people are looking to California.
More sterilizations occurred in California than any other state, claiming some 20,000 victims. In 2003, California governor Gray Davis offered a three-sentence apology, but as the Los Angeles Times noted after the event:
No survivors or disability groups were on hand to accept it. There was no order to probe for more details of a history that, according to scholars, is still largely unexplored and not fully understood.
As such a large contributor to the American eugenics movement, California should be the next in line to step up, but it should not stop there. Of the 33 U.S. states that had eugenic sterilization laws, only seven have even issued apologies.
Setting up a commission similar to North Carolina’s could be deeply significant for the victims. Drawing attention to this dark history could also serve as a warning against the prospect of misusing 21st-century genetic and reproductive technologies. As Biopolitical Times readers well know, it haunts our thinking about the reproduction of people with disabilities and people of color today.
In 1940, when many feared that Britain would imminently fall to Hitler, a committee at Yale University extended an offer of refuge in the US to the children of faculty members at Oxford and Cambridge. Officials at Cambridge University declined, on the grounds that sending their children to safety when other Britons could not “might be interpreted as privilege for a special class.” But Oxford accepted the invitation, and in July of that year, 125 children and 25 of their mothers set sail for temporary homes with Yale families.
Their hosts in and around New Haven apparently acted out of altruism and kindness. Neither they nor the Oxford children and mothers were told that the Yale organizers were motivated by explicitly eugenic commitments to “saving at least some of the children of intellectuals.”
A fictional story based on this eugenics-inspired program is told in Pantheon, a thriller recently released in the UK (available in the US via online sellers). Author Sam Bourne, the literary pseudonym of prize-winning and left-leaning British journalist Jonathan Freedland, has written four previous thrillers, one of them a New York Times and number one UK bestseller. Pantheon has been reviewed in the UK by The Guardian,The Independent, and the Jewish Chronicle. The Daily Mail responded to its publication with an article about the Yale-Oxford program titled, “Did Yale University plan to create an intellectually superior race of children to repopulate Britain after World War Two?”
Freedland himself, in a Guardian piece written under his own name and in an interview sponsored by Jewish Book Week [UK], contemplates the early responses to Pantheon, and especially to his point that eugenics appealed strongly to elements of the political left as well as the right. Eugenics, Freedland writes, is “one of the grisliest skeletons in the cupboard of the British intellectual elite, a skeleton that rattles especially loudly inside the closet of the left.”
It’s all too easy, he notes, for left-liberals today to react as if this “were all an accident of time, a slip-up by creatures of their era who should not be judged by today's standards.” He continues:
[T]his was no accident. The Fabians, Sidney and Beatrice Webb and their ilk were not attracted to eugenics because they briefly forgot their leftwing principles. The harder truth is that they were drawn to eugenics for what were then good, leftwing reasons.
They believed in science and progress, and nothing was more cutting edge and modern than social Darwinism. Man now had the ability to intervene in his own evolution. Instead of natural selection and the law of the jungle, there would be planned selection….If the state was going to plan the production of motor cars in the national interest, why should it not do the same for the production of babies?
The UK reviews of Pantheon have been mixed. The Guardian, for example, called ita “pacy thriller” and predicted that “readers will not be disappointed,” but also criticized the book for being weak on character development and subtlety. According to the reviewer, Freedland is “unwilling to trust his readers with the complexities of history." And when it comes to Freedland’s treatment of eugenics, he wrote, “we get crude stereotypes.”
Well, perhaps – or perhaps what we’d now like to dismiss as “crude stereotypes” seemed at one time like common sense. In any case, at least the issues are being discussed in the UK. So far, no major US media outlet has covered either Pantheon or the eugenic ideas that motivated the Yale-Oxford program.
Perhaps this silence can be explained by the book’s not having yet been released in the US. But the US eugenics movement, a powerful force for much of the pre-WWII twentieth century, is on the whole little discussed in this country. And as Freedland writes in an author’s note at the end of Pantheon, it was “in particular vogue at Yale.” One notable adherent was Yale president James Angell (1921-1937), whom eminent Yale historian Gaddis Smith describes as “a fanatic eugenicist.” Neither Angell’s Wikipedia page nor the Yale website mentions his eugenic beliefs.
I liked Pantheon better than did most of the British reviewers, both as a page-turner and as a dramatization of recent histories whose meanings we would do well to ponder. In addition to giving us a vivid account of the Yale-Oxford eugenic rescue operation, Freedland weaves in other episodes from the 1930s and 1940s, offering glimpses of the Spanish Civil War, the “America First” movement, the virulently anti-Semitic Right Club in London, and the early days of the “Ivy League nude posture photo scandal,” another project at elite US universities that was motivated by eugenic beliefs.
Freedland opens his essay in The Guardian, which he says was triggered in part by the early responses to Pantheon, by asking:
Does the past matter? When confronted by facts that are uncomfortable, but which relate to people long dead, should we put them aside and, to use a phrase very much of our time, move on?
I’m with Freedland on this one: While eugenics once appealed to people across the entire political spectrum, those of us associated with its progressive, left and liberal end have a special responsibility to understand what it meant then, and what its legacy is now.
Last weekend offered an interesting conversation on past and more modern attempts at building betters humans, which might ultimately say something interesting about our human future.
On Friday, the New York Times published an article on North Carolina’s deliberations on compensating victims of its eugenics program, in which nearly 8,000 people were sterilized without their consent between 1933 and 1977. This state-level program operated in the broader context of a global eugenics movement – reaching from Bloomington, Indiana, to Auschwitz – whose ultimate goal was to use science and medicine to breed better humans by weeding out individuals deemed unfit for reproducing their ostensibly inferior traits. The Times describes a number of harrowing accounts from North Carolina during this period:
There was a 14-year-old girl deemed low-performing and “oversexed” who came from a home with poor housekeeping standards. A man who raped his daughter at 12 signed her sterilization consent when she was 16 and pregnant. A mother of five was deemed to have a low I.Q.
Many of the victims mentioned in the Times article are still alive, including 62-year-old Charles Holt who was, in a sense, tricked into having a vasectomy as a young man. A social worker convinced his mother that this was the right thing to do since “it was a way of protecting Charles in case he were falsely accused of having fathered a child.”
Previous journalistic accounts – particularly the Winston-Salem Journal’s award-winning five-part series – have offered even more detailed descriptions of North Carolina’s chilling program and its horrific impact on people’s lives. But the New York Times has a reach and audience that may put this piece of history into mainstream consciousness.
These cases are particularly interesting in that they highlight how eugenics flourished in the United States after World War II, when eugenic ideologies were thought to have waned due to global exposure to the Holocaust’s horrors. The Times article discusses the entrenched nature of these programs by noting
about 70 percent of the North Carolina operations took place after 1945, and many of them were on poor young women and racial minorities. Nonwhite minorities made up about 40 percent of those sterilized, and girls and women about 85 percent.
Eugenics was driven by a desire to restrict reproduction to only those who were genetically gifted – a way to purify the human race for society’s betterment. But, the pursuit of human perfection is not only limited to screening or enhancement at the population level.
An example can be seen in ESPN’s broadcast of “The Marinovich Project” on Saturday evening. This one-hour documentary detailed the life of Todd Marinovich, a once heralded quarterback prospect who fell short of NFL glory. Among sports fans, the name “Marinovich” is synonymous with fanatical parenting; Todd’s father Marv is notorious for rigorously training him to be the perfect QB from birth. Marv notes in the film:
I started from birth and [went] through a series of stretching exercises. I would grab the foot and gradually bring it back and stretch the hamstring. Quads the same way. Todd was given a limited diet. He wasn’t supposed to have any processed foods. When Todd was teething, we gave him frozen livers and kidneys. We kept them out of walkers so that they could develop hand/eye coordination. We got him to become ambidextrous so he could throw with both hands. I took him out to the football field and had him crawl hundreds of yards....One exercise that Todd did required him to stand on a balance beam in a dark room and bounce a ball while doing multiplication tables out loud. . . . What I wanted to do was continuously raise the level of performance.
Marv notes in the film that he was quite clear about his motivations: “The question I asked myself: how well could a kid develop if you provide the perfect environment?” A 1988 article from Sports Illustrated – when Todd was in high school – offers a bit more detail on this training regimen:
What's fascinating about Marinovich, a 6'4½", 212-pound left-handed redhead, is that he is, in a real sense, America's first test-tube athlete. He has never eaten a Big Mac or an Oreo or a Ding Dong. When he went to birthday parties as a kid, he would take his own cake and ice cream to avoid sugar and refined white flour. He would eat homemade catsup, prepared with honey. He did consume beef but not the kind injected with hormones. He ate only unprocessed dairy products...
When Todd was one month old, Marv was already working on his son's physical conditioning. He stretched his hamstrings. Pushups were next. Marv invented a game in which Todd would try to lift a medicine ball onto a kitchen counter. Marv also put him on a balance beam. Both activities grew easier when Todd learned to walk. There was a football in Todd's crib from day one. "Not a real NFL ball," says Marv. "That would be sick; it was a stuffed ball."
Meanwhile, Todd's mother, Trudi, worked on the region above the neck by playing classical music (lots of Bach and Beethoven) and jazz (plenty of George Shearing and Woody Herman) in his room. Cartoons were forbidden because they were too violent. [Author's side note: Training your child from birth to play football – a sport that often leaves players with debilitating, lifelong injuries is appropriate, yet allowing him to view the animated antics of Wile E. Coyote and the Roadrunner is too much?]
Instead, Trudi tuned her son in to old movies like Hitchcock and Agatha Christie thrillers to spark his intellect. She dragged Todd along with his sister, Traci, now 21, to museums. To this day, when Trudi makes an unexpected turn in the car, Todd says, "Uh-oh, Mom's taking us to another museum."
Eventually Marv started gathering experts to work on every aspect of Todd's physical condition—speed, agility, strength, flexibility, quickness, body control, endurance, nutrition. He found one to improve Todd's peripheral vision. He enlisted a throwing coach and a motion coach and a psychologist. These days 13 different experts are donating their time in the name of science.
Todd became a quarterback phenom in high school, gaining national attention as the “Robo Quarterback” that ultimately landed him a football scholarship at USC. Todd’s professional career was cut short due to drug abuse – an ending not entirely unpredictable given the tremendous pressure he was put under to become what his father wanted him to be, not his own person.
One would be hard pressed to call the Marinovich’s training program a form of eugenics. However, there is an important connection in that it is the maniacal pursuit of molding individuals to excel in predetermined ways that ultimately drove eugenics at a policy level. This is the individual tragedy that’s often obscured by the population level indignities perpetrated by eugenics: even those designed to be perfect eventually suffer from the inhumanity of not being allowed to be their own person. Read together, the New York Times article and the ESPN film weave together a cautionary tale about both social and parental temptations to project a narrow view of perfection upon future generations.
The San Francisco Bay Area’s CBS affiliate recently ran a segment (video appears below) on the high demand and low supply of young Asian women willing to provide their eggs for other people’s fertility treatment. The clip focuses on the story of a young woman named Linh Hong, a tall, thin Berkeley grad with a 3.6 GPA – characteristics that, along with being Asian, yielded $15,000 for her eggs. Two couples are now expecting due to her services. The segment provides a decent overview of the issue, but is troublesome in at least two regards. First, it does not discuss the risks that egg providers face, which include ovarian hyper-stimulation syndrome that has led to serious adverse reactions and even death in some cases. Linda Yee, the journalist covering the story, only mentions the “grueling series of shots, doctors visits, and egg extraction surgery.”
A bit more detail here would have been useful, especially when astronomical compensation numbers upwards of $100,000 are thrown around in the segment at the very same time that many young women are feeling crushed by dramatic tuition hikes that have spawned campus protests across the state – including Berkeley, which is heavily targeted by egg brokers.
Second, the segment’s focus on Asian eggs makes it seem like these are the only racial traits that yield high compensation in the fertility market; historically, blond hair and blue eyes have been just as valuable if not more so. While the segment touches upon issues within Asian communities that may make this practice taboo (where scarcity drives demand upwards), a broader look at the traits sought by prospective parents would have provided greater context to a statement made by Stanford University bioethicist David Magnus in the segment: “What we have is the beginning of the specter of eugenics.”
News about non-invasive prenatal diagnosis (NIPD) was a high point in this summer's developments around the global problem of sex selection. A front-page article in the New York Times reported on a study that says a new prenatal genetic testing technique can detect fetal sex extremely early into a pregnancy with a high degree of accuracy – 95% at seven weeks and 99% at 20 weeks.
Quite remarkably, the new technique requires only a maternal blood sample. The test isolates and screens fragments of fetal DNA (known as cell-free fetal DNA or cffDNA) that begin circulating in the mother's blood soon after conception. A simple blood test is of course significantly less invasive than procedures like amniocentesis, which collect amniotic fluid and carry elevated risks of miscarriage.
While NYT and other outlets mention questionable accuracy, cost concerns, and the disappointed parents who've been duped by similar tests, coverage has barely nodded to NIPD's enormous implications. Concerns about how these tests will impact sex selection are written off as issues for countries like China and India, "where boys are prized over girls and fetuses found to be female have been aborted."
Others are telling a different story. In a recent interview with Al Jazeera English, my colleague at the Center for Genetics and Society Marcy Darnovsky noted:
Sex selection is taking place not just in countries in Asia, but it's spreading around the world. And, unfortunately, the United States has become a destination for people who want to escape policies in their own countries that restrict the use of some technologies for what is called 'social sex selection' – sex selection because that's what the parents prefer.
Dr. Sunita Puri has examined sex-selective practices among South Asian families living in the United States, as well as the divergent perspectives of American primary care physicians and sex selection providers about the procedure. Additionally, Mara Hvistendahl's recent book Unnatural Selection provides an unprecedented examination of the severe and globe-spanning consequences of sex selection. Hvistendahl estimates that 160 million girls have gone "missing" because of sex selection due to son preference, largely in China and South Asia. But sex selection also appears to be worsening in a number of regions around the world where development, modernization and access to affordable sex determination technologies are on the rise.
There are also other woefully under-examined questions, including what these seven-week tests might portend about selecting for or against traits other than sex. A test released just last month by biotech company Sequenom uses a similar non-invasive cffDNA early technique to test for Down syndrome. While many applaud "MaterniT21" for making screening for Down's more convenient, few are questioning what it means for parents to have such early knowledge about a fetus. My colleague Emily Beitiks touches on this in her blog this week in Biopolitical Times.
Prenatal genetic testing has been around for decades, as has the disability rights critique of it [1, 2]. But gaining access to genetic information about a fetus so much earlier would be a very significant change. At seven weeks, some women aren't even aware they're pregnant. Many have not yet told people, nor perhaps have they become as emotionally attached to the fetus as they will later on. At such an early stage, a woman can terminate a pregnancy simply by taking a pill. Undergoing a cheap, non-invasive and risk-free test, especially one likely to be sold as the "healthy" or "responsible" choice, might be seen as an inconsequential non-decision.
UC Hastings Law Professor Jaime King critically examines the social implications of NIPD if it becomes a widespread or even standardized part of prenatal care. She writes:
On a national scale, normalizing the offer of NIPD to all pregnant women can create significant pressure on women both to test their fetus and terminate affected fetuses, as the information is available via a risk free medium. This pressure can create a loop-back effect, such that the ease of testing and termination create disapproval for and reduction in support of women with disabled children, which, in turn, may increase the pressure to test.
As more genomic information becomes available at early stages of pregnancy, will parents select for non-medical traits like eye color, skin tone, height, or athletic ability? In such a scenario, one would decide which baby to keep based on whether or not it carries certain preferable and socially valued traits. How would this differ from past eugenic endeavors, which have led to nothing but catastrophe?
Public deliberation and attention from reproductive justice and other civil society advocates are sorely needed if we are to eschew NIPD's potential to exacerbate social discrimination and inequality, and to trivialize fraught questions around testing and sex and trait-selective abortion. And we have to do this while we ardently defend women's right to choose to terminate a pregnancy. The prospect of abusing technology and reproductive freedom to design future generations is a threat to both women's and children's rights and the common good.
Global attention to the growing sex selection problem appears to be snowballing. In the wake of last week’s draft resolution on sex selection from a special commission of the Council of Europe, the World Bank’s 2012 World Development Report (WDR 2012) [pdf], published Monday, foregrounds sex selection as a major global issue perpetuating gender inequality. Entitled “Gender Equality and Development,” the report identifies how complex social, behavioral, and technological factors have converged to skew sex ratios and disenfranchise women in parts of Asia and Europe.
The intersection between son preference, declining fertility, and new technologies has added to the number of girls missing at birth and may well disadvantage children already born through the number of siblings and the timing of births.
Although the report regards sex selection with seriousness and urgency, the overall statement is both proactive and optimistic.
Changes in informal institutions and, through them, household behavior are key to resolving this problem. And it can be done. Korea, where the male-to-female ratio at birth first increased sharply and then declined, suggests that broad normative changes across society brought about by industrialization and urbanization can ultimately return sex ratios at birth to normal ranges.
It identifies two levels on which policy efforts are desperately needed.
First, laws need to be enacted and enforced to deal with the abuse of sex selection technologies, as has been done in China and India. A second, and more promising, approach is to enhance household perceptions of the value of daughters. Expanding economic opportunities for young women, including those in the labor market …And the process can be complemented by providing financial incentives to parents to have daughters…and supporting media campaigns to change societal ideas about gender equality.
Efforts to attenuate the global sex selection problem will require coordinated top-down/ bottom-up approaches which, as above, acknowledge both the emergent technological and deeply rooted social/cultural dimensions.
The Council of Europe’s statements, released last week, astutely recognize how sex selection arises as an extension of culturally rooted violence and discrimination against women. Important research has shown these pervasive patterns violence are giving rise to sex selection not only in parts of Asia and Europe, but in North America as well. With this in mind, the commission’s recommendations espouse long term, socially informed, gender equality-based interventions.
Seeing sex selection featured prominently on the agendas of two major international bodies is encouraging to say the least. The hope is that WDR 2012 brings us one step closer to catalyzing action from the international community to address the sex selection problem, as well as the underlying gender violence and inequality issues that it both results from and promotes.
Dr. Otmar von Verschuer, an "internationally renowned expert on twin studies . . . [and also] the principal investigator in the experiments of Dr Joseph Mengele at Auschwitz." (http://www.
Researchers compare some behavior or trait in a set of pairs of monozygotic (identical) twins and a set of pairs of dizygotic (fraternal) twins. In theory, the siblings in each pair have been raised in the same way—i.e., they have "nurture" in common. But their "natures" might be different: Identical twins come from the same sperm and egg and are assumed to share their entire genomes; fraternal twins match up at only about half their genes. So if the pairs of monozygotic twins tend to share a trait more often than the pairs of dizygotic twins—be it the likelihood they will vote, a tendency toward altruism, or a strategy for managing their financial portfolios—the difference can be chalked up to genetics. Some call this approach beautiful in its simplicity, but critics say it's crude, potentially misleading, and based on an antiquated view of genetics. The implications of the studies are also just a little bit dangerous, because they suggest, for example, that some people just aren't cut out for being nice to one another.
Palmer correctly identifies Francis Galton as the first person to use twin studies as a methodology to seek the heritable components of human behavior. Galton also coined the term “eugenics,” giving twin studies an intellectual and political origin that few modern scientists care to acknowledge. While Galton’s initial approach to twin studies was surely rudimentary compared to today’s standards, Palmer draws attention to the assumptions embedded in modern twin studies that continue to raise questions about this approach:
Twin studies rest on two fundamental assumptions: 1) Monozygotic twins are genetically identical, and 2) the world treats monozygotic and dizygotic twins equivalently (the so-called "equal environments assumption"). The first is demonstrably and absolutely untrue, while the second has never been proven.
Palmer’s critique has (predictably) caused a firestorm in the article’s comments section. Regardless of which side you are on, Palmer ends the piece with a comparison of twin studies to phrenology that is worth thinking about:
There's a strong temptation to believe that the same genes that make identical twins look so similar also make them think and act identically. That assumption isn't just insulting to a twins' individuality; it displays a reductive attitude toward the incredible complexity of our genetic structure, which scientists are just beginning to understand.
Just in time for the “Summer of Sex Selection,” the Council for Responsible Genetics has published a thorough and timely report about the imminent introduction of “non-invasive prenatal genetic diagnosis” (NIPD) and how it may encourage the spread of reproductive trait selection.
Prenatal genetic diagnosis is currently accomplished with amniocentesis or chorionic villus sampling. Both of these methods hold a risk of miscarriage, preventing widespread use. NIPD, however, only requires a sample from the mother’s blood stream and can offer results as early as the seventh week of pregnancy, suggesting that prenatal screening will become far more pervasive. CRG’s report explores the risks of widespread NIPD use, whether screening for disabilities like Down syndrome, the sex of the fetus, or for a wider variety of traits and “pre-sick” tendencies.
The report explores the current limitations of NIPD and its predictive abilities, and then expands into tougher ethical questions. For example, author Lori Haymon asks how NIPD will raise new challenges for both pro-life and pro-choice groups, as NIPD may lead more women to abort after finding an “undesired” trait. Haymon challenges us to consider, “Will NIPD results provide a woman with information that she can use to make her decisions, or information that makes the decision for her?”
While the report does not attempt to provide policy recommendations for NIPD, it is significant for the questions it poses. These are questions we’ll have to confront to anticipate and avoid neo-eugenic uses of NIPD.
Between numerous newspaper and magazine articles, a report by the World Health Organization, and Mara Hvistendahl’s new book Unnatural Selection, it is safe to declare this the “Summer of Sex Selection” given widespread attention to the topic. This robust conversation is being driven by radically skewed sex ratios in some parts of the world that are wreaking demographic havoc. Son preference, along with increasing access to prenatal sex determination, has led to an estimated 160 million so-called “missing” girls – an astonishing figure that has led some localities to experience out of whack sex ratios that reportedly approach 200 boys born for every 100 girls.
I find it interesting that almost every conversation of this phenomenon in Western media outlets discusses son preference as some bizarre cultural practice that “those people do over there,” like bartering at a market. The ubiquitous yet subtly important phrase “in India and China” that highlights most of these accounts makes it seem like the devaluation of girls and women is uniquely Asian and South Asian – perhaps something that they’ll outgrow as they continue to buy Big Macs and Westernize.
Gallup has asked Americans about their preferences for a boy or a girl -- using slightly different question wordings over the years -- 10 times since 1941. In each instance, the results tilt toward a preference for a boy rather than a girl. The average male child-preference gap across these 10 surveys is 11 percentage points, making this year's results (a 12-point boy-preference gap) just about average. Gallup found the largest gap in 1947 and 2000 (15 points) and the smallest in a 1990 survey (4 points).
The attitudes of American men drive the overall preference for a boy; in the current poll, conducted June 9-12, men favor a boy over a girl by a 49% to 22% margin. American women do not have a proportionate preference for girls. Instead, women show essentially no preference either way: 31% say they would prefer a boy and 33% would prefer a girl.
It’s tempting to conclude that perhaps we’re not so different after all when it comes to the preferred sex of our children. But, it’s important to point out that a preference for sons may not be the same as son preference: it’s one thing to prefer a boy the way that one prefers chicken over steak and quite another to deliberately test for and abort girl fetuses. So while there may be conceptual similarities, this preference has not yet led American couples to pursue boys with the same vigor seen elsewhere.
But will new technologies change American sensibilities? Sex determination largely occurs via ultrasound at around 16 weeks, which is well into a pregnancy; only the most determined couples are likely to abort solely on the basis of sex at this stage. But new technologies such as non-invasive prenatal diagnosis, in which fetal sex can be detected as early as five weeks through a maternal blood test, may make sex determination and the possibility of terminating on the basis of sex easier – conceptually, emotionally, and physically. Might this technological shift turn Americans’ preference for sons into a full-blown son preference?
Charles uses this wheelchair later as "Professor X"
X-Men: First Class is the most recent addition to the X-Men series, which features humans born with mutant powers battling for their lives and respect while feared by the general population. Its release last week is sparking rich but in some cases misguided public conversations around genetics and human rights. One commentary focuses on its regrettable omission of civil rights events despite being set in the early 60s, while another makes dubious claims that it represents our “post-racial” society.
But no one appears to be questioning the whole premise of the X-Men series: Would people marked by their genetically-based physical and mental advantages actually experience group discrimination? The series depicts “gifted youngsters” who are oppressed because they are mutants; in real life young people with their “gifts” would be more likely to get dedicated websites and multimillion-dollar contracts.
X does several things well. Beyond its seamless computer graphics, tremendous acting, and cohesive storyline (it’s a prequel to the other films in the series) is a poignant portrayal of intolerance. Charles (future “Professor X”) and Eric (future “Magneto”), the leaders of mutant solidarity, are drawn together by their common goal of redressing hardships endured by their kind. But their allegiance is severed by divergent strategies: Charles intends to educate his oppressors, while Eric intends to overcome them (and obliterate one in particular).
This rift conjures heady questions of culpability, intentionality, and practicality. Must oppressors be punished, even when their offenses are motivated by ignorance rather than malice? Or do they deserve the opportunity to rectify their wrongs? Should the oppressed strive for peace and satisfaction by arduously cultivating equality, or by using brute force to demand respect?
The parallel between the Professor X/Magneto dichotomy and the one ascribed to MLK and Malcolm X is hard to miss. But as Ta-Nehisi Coates effectively argues in the New York Times, the new movie portrays “enlightened white dudes” confronting discrimination during major real-world events of recent US history. The filmmakers choose not to portray the concurrent movement for civil rights and racial justice. Is this an effective framework for social commentary?
This brings us back to the question of discrimination against the privileged. One clue: Unlike all non-mutant humans in the film (save one quirky scientist), we don’t hate these mutants; we want to be them. We leave the movie theater wishing we could teleport to the car while our children run ahead flapping their outstretched arms.
Ironically, the desire to achieve body/mind “greatness” underpins history’s most egregious human rights abuses (see X’s opening scenes). Conscious attempts to promote “X”-esque traits in society have led prominent scientists, Supreme Court justices, and even presidents to make ludicrous correlations between culture, race, social status, and value, sometimes expressed in laws and social practices of persecution, sterilization and torture. If human desires for faster/stronger/smarter can cascade to such nadirs of brutality, perhaps we should question our pursuits of enhancement.
As trait-selection genetic technologies develop, it would be wise to keep in mind who is likely to need protection from discrimination. X-type powers like flight or teleportation are unrealistic for the foreseeable future, as Emory bioethicist Paul Wolpe and others point out. Selecting for traits that emulate the current “best achievements of the species” is much more plausible. So the real X-persons would not be as fearfully different as characters like blue-skinned Raven (future “Mystique”). Far from persecution, the privileged “selected” would likely be primed as our greatest athletes, thinkers and leaders. That is, until selecting for these traits becomes the norm, and even higher standards are set for greatness (the Bell Curve is a fickle mistress). In this not-too-distant world of trait selection, what happens to those who choose not to adopt, or do not have access to, the technology?
“Whoah, slow down,” you might be saying. “No one said anything about human engineering. The movie is an allegory for the adversity and perseverance of historically marginalized groups. Besides, the effects were cool.”
But does it really serve this noble purpose? (Spoiler alert.) None of the mutants have less-abled bodies or minds; the only major black character is killed before critical narrative developments; and the mutants face persecution only because of their superhuman powers. In this movie, a group is forced into society’s margin for traits that keep people out of the margin in the real world. Neither present nor future human rights issues are well represented by this allegory.
The Annals of Human Genetics is a well-respected scholarly journal dedicated to “increase[ing the] understanding of the biology of human variation, both in disease and in health.” Since 1954, it has been known as a go-to place for cutting edge research on population genetics and other relevant scholarship regarding the relationship between human genetics and health outcomes.
Yet, the most recent issue of AHG takes a look back at the journal’s origins – a history that many geneticists would rather forget. The journal was originally conceived in 1925 under a different name: Annals of Eugenics. Between 1925 and 1954, the journal had an explicit mandate to publish scientific findings that furthered eugenic ideals related to breeding a superior race of Whites and curbing the reproduction of those deemed racially inferior – largely consisting of the poor, people of color, and those with disabilities. The editors noted in the inaugural October 1925 issue that “The time seems fully ripe for the issue of a journal which shall devote its pages wholly to the scientific treatment of racial problems in man.”
This special issue (free access) marks the first time that the articles published between 1925 and 1954 under the old title Annals of Eugenics are available online. USA Todaydescribed this as “represent[ing] a housecleaning for the publication . . . [in that AHG] has opened its archives.”
Well, not really. AHG’s past as the Annals of Eugenics wasn’t exactly a secret of Schwarzeneggar proportions. Folks have known and have been talking about this for quite some time. And while making these early articles freely available online will increase access, hardcopies of the Annals of Eugenics have been available in pretty much every major University library since their original publication.
This gesture by AHG’s editors is certainly important and will hopefully re-engage the scholarly community on the troublesome history between eugenics and certain applications of modern genetics. However, this is not so much of a housecleaning as it is an acknowledgment of something that many people working in this area already knew. That being said, AHG’s current editor hits the nail on the head in noting that the eugenic origins of modern genetic research “shouldn’t be forgotten. Since the social implications of a lot of current human genetics research are enormous it seems important that in judging what human genetics is doing now we maintain awareness of the history of this discipline."
Sometimes the phrase "gene of the week" just doesn't fit. We do have one this week — oh joy, a happiness gene! — but there are other, related reports equally worth noting. They are all about dreams of control, of ways we can take charge of our future by reading our biology and manipulating our children's genes.
First, and least, is the announcement of a commercial test to measure the length of telomeres and thus predict longevity! For a mere $700, a Spanish company called Life Length plans to sell you the "death test" with the claim that:
"Knowing whether our telomeres are a normal length or not for a given chronological age will give us an indication of our health status and of our physiological 'age' even before diseases appear."
However, a British expert tells Scientific American that: "We haven't defined what we consider to be a norm and what we consider to be abnormal, either long or short." Pro tip: Regular exercise, low stress and good diet are correlated with longer telomeres. Might be worth trying.
And the "happiness gene"? That's a typically unwarranted claim, derived from a journal article about how "functional polymorphism (5-HTTLPR) in the serotonin transporter gene is associated with subjective well-being." The abstract helpfully explains that this "may help explain the important genetic component of the individual baseline levels of happiness." Ian Sample of the Guardian notes in his fourth paragraph that the study marked a "tentative step" but finds this lead irresistible:
In work that gives cranky teenagers another reason to blame their parents for all life's woes, researchers have uncovered a genetic link to happiness.
And then he suggests that a "greater understanding of happiness genes might in future allow would-be parents to create a child who will be more satisfied with their life." And, sure enough, he found an academic, Edward Diener of the University of Illinois, to say:
"Parents one day might have the choice of whether to choose genes that will create a child who is more satisfied with his or her life."
And so the dreams of controlling the future surface again. Meanwhile, Discover (something of a haven now for transhumanists) has picked up on University of Oregon physics professor Steve Hsu's hopes of defining the genetic nature of "the g factor, or IQ." He wants to use that to, yes, select the embryos with the best combination of alleles, in order to increase the mean level of g by 0.2 SDs [from this pdf], so there will be "more than twice as many individuals exceeding 4 SDs above the parental mean." This will obviously solve the world's problems overnight, or something, it's not quite clear what. But Ronald Fisher, the great statistician and geneticist, and the long-time editor of the Annals of Eugenics, thought it was a good idea in 1911. Hsu's presentation ends by quoting Fisher.
In addition to being a professor of physics, Hsu is also associated with BGI, formerly the Beijing Genomics Institute. That's a very big deal: $1.6 billion in funding; ramping up to 1000 genomes (of many species) sequenced a day at $5K each; and, according to Hsu, "more sequencing power than all of US or Europe combined."
Is it unfair to lump what could develop into a major project funded by the Chinese government together with a crass commercial outfit and a tired rehash of genetic determinism? Yes it is. If Hsu's project really starts to take shape, then it deserves the kind of treatment Stephen Jay Gould gave The Bell Curve, and more. Until then, mild ridicule is a start. But we'd better keep an eye on this.
Two substantial excerpts of a conversation between Robert P. George and Arthur Caplan have been posted at Public Discourse. The discussion took place in December 2010, and was intended to cover "the current state of bioethics in America," with Caplan presenting the liberal point of view and George the conservative. The selections are presented as if to maximize controversy, but the agreement between the two is more striking.
The first is published as "Stem Cells: The Scientists Knew They Were Lying?" (which did attract some attention). Caplan does indeed excoriate stem cell researchers and their supporters who badly over-hyped ESC research, which he supports; George, who opposes it, notes that allies of his made false claims that "everything that could be done with embryonic stem cells could be done with adult stem cells" — which he and they knew to be false. Although Caplan and George disagree on embryo research and other issues, they do both accept that moral norms are vital to bioethics and that reductionist scientism is to be condemned.
The second excerpt is titled "Democratic Bioethics and Eugenics" and worth reading for a nuanced discussion which demonstrates that their areas of agreement are substantially larger than their conflicts. Again, it is possible to extract quotes ("the problem with eugenics is eugenics itself" ... "many say you can't [distinguish between enhancement and therapy], but I think you can at the extremes") but they really should be read in context.
More conversations like this please.
Update: Caplan was apparently surprised that his remarks about over-hyped ESC research were considered by some to be new, and taken out of context. He elaborates in Science Progress about the hype on all sides of that debate.
Last week Arizona became the first U.S. state to ban abortions that are motivated by the race of a fetus, and one of a handful of states that ban sex-selective abortions. Governor Jan Brewer, a Republican with a record of strong opposition to abortion rights, put her signature on the new law that will require doctors to sign affidavits stating that the reason for an abortion was not related to fetal race or sex. Doctors can be sued, stripped of their medical licenses, charged with felonies, and sentenced to prison terms for violations (1, 2, 3).
The Arizona law is part of a much larger strategy that opponents of abortion rights openly promote as a “new front in the abortion wars.” In 2008, Republican Congressmen Trent Franks of Arizona and Jeff Fortenberry of Nebraska first introduced the cynically named “Susan B. Anthony Prenatal Nondiscrimination Act,” which prohibits “discrimination against the unborn on the basis of sex or race.” Similar bills have been introduced in other states including Georgia, Mississippi, and New Jersey.
Beyond the obvious, what’s the thinking behind this? Anti-abortion rights leader Steven W. Mosher of the Population Institute argues that “[l]ike the ban on Partial Birth Abortion,” linking abortion to racial and sex discrimination will both chip away at abortion rights and “stimulate public debate on grounds favorable to the pro-life cause.” Translated by abortion rights supporter Kathryn Joyce, this means that “linking abortion with female infanticide and sex-selective abortion…[is] a method of converting moderates who would recoil at the thought of reproductive choice being used as a weapon of gender inequality.”
The same logic underlies the meaning-free notion of “race-selective abortion.” Anti-abortion rights advocates see this as a way to drive a wedge between Americans’ commitments to racial justice and their support for abortion rights. And as SisterSong’s Loretta Ross points out, it’s also a handy way to “shame-and-blame black women who choose abortion.”
Like many other conservative causes, the “new front” against abortion rights is well funded and multi-faceted. One tactic is the 2009 “shockumentary” Maafa 21: Black Genocide in 21st Century America, which argues that abortion is an attempted genocide of black people. The film has become a cause célèbre of the black anti-abortion movement, which supports the efforts to ban sex-selective and “race-selective” abortions. Reproductive justice legal scholar Dorothy Roberts points to the sad ironies that burgeoning movement represents:
They are essentially blaming black women for their reproductive decisions and then the solution is to restrict and regulate black women’s decisions about their bodies….Ironically, they have that in common with eugenicists.
Another tactic in the “new front” is the placement of dozens of billboards in cities including Atlanta, New York and Chicago that read “Black children are an endangered species” or “The most dangerous place for an African American is in the womb.” In the words of writer, blogger and reproductive justice activist Miriam Zoila Pérez, the billboard campaign “is exploiting America’s racist medical history to foster the belief that abortion is black genocide.”
Advocates of reproductive and racial justice and of reproductive rights have, of course, forcefully criticized the billboard campaign and legislative efforts to ban abortion for reasons of race or sex. Some of the billboards have been taken down following protest, and bills in states other than Arizona and at the federal level have so far stalled.
Here are a few resources for background, insight, and calls to action:
What might the world look like if traits like eye color, athletic ability, and skin tone could be pre-programmed for a price, and characteristics like homosexuality were eliminated through government-enforced inoculation?
Director Nisha Ganatra explores these questions in her provocative new 20-minute film Beholder, which was recently released online and at film festivals. It inaugurates the second season of FutureStates, a Corporation for Public Broadcasting / Independent Television Service project in which ten established and up-and-coming filmmakers explore current social issues by playing them out decades in the future.
Beholder presents a chilling scenario in which hetero-normative prejudices are realized through state-mandated applications of genetic and reproductive technologies. In an interview with Biopolitical Times, Ganatra said she wants to challenge viewers to imagine a future in which "difference is not only undervalued, but has been voted out completely."
Beholder protagonist Sasha lives in an ultra-conservative ultra-exclusive gated community called Red Estates, where streets are immaculate, crime is non-existent, and children are genetically enhanced. Scientists have also pinpointed a genetic marker for homosexuality, which has been outlawed by way of mandatory screening and inoculations during pregnancy (or, it is implied, forced abortions).
When Sasha finds out that the baby she is expecting carries the "gay gene," her doctor assures her that the problem can be quickly and easily resolved, and a nurse entreats her in a sterile and eerily polite tone to "please sign the consent form for the mandatory inoculation." Tortured by the thought of altering her baby, Sasha poses the question, "what if my child would have a better life being who he is?"
Under the looming threat of the "Genetic Protection Agency," Sasha knows that a decision to refuse the inoculation would mean fleeing Red Estates for "the Coasts," a place - according to Red Estates propaganda - that is rife with violence, poverty, and other social ills. In a campaign speech, Sasha's politician husband explains:
Recent studies find that genetically enhanced children, lead happier, easier, more normal lives than the coast children. Don't let your child be left behind!... Red Estates is a model city-genetically, morally, politically superior to everything beyond those borders. There are rules that make Red Estates great, and we have to live by those rules. For the greater good…No matter what the personal sacrifices.
Ganatra shrewdly shows how ideologies that champion using technologies "for the greater good" often disenfranchise, and in this case eugenically eliminate, those who have less power and have been deemed socially problematic. She told Biopolitical Times that it was her anger and disappointment over California's Prop 8 that led her to explore the question, "what happens when the majority can take away the rights a of a minority group?" Having come face to face in her own life with the emerging social and ethical questions around selecting sperm donors and their traits, Ganatra decided to unpack this question through the lens of reproductive technologies.
She added that her goal, and that of the FutureStates project as a whole, is not to deliver overly fantastic or dystopic stories but to capture the social realities of the present and predict their consequences for social justice in the not-so-distant future. "The great thing about sci-fi," she said, "is that one gets to ask the question, what if this wasn't just the worst-case scenario? What if that was only the beginning?"
Some sci-fi movies dwell on futuristic technological enchantments. In Beholder, Ganatra chillingly and persuasively shows what might happen if the social injustices of today are channeled through the technological possibilities of tomorrow.
The piece itself regrettably spells his name wrong, but Savulescu evidently accepts its substance, judging by the reply he gave to a response posted by an Oxford colleague, Neil Levy. Certainly the positions it describes are in line with views Savulescu has frequently expressed, for instance in his 2009 lecture "Genetically Enhance Humanity or Face Extinction" [videos here]. He backs away from that position a little in the Q&A, but the title is a reasonably fair summary of views he has advocated for a decade. In 2001, he published an article in Bioethics [pdf] titled "Procreative Beneficence: Why we should select the best children."
It is tempting now to write off Savulescu's opinions as predictable, but Levy's comment is surprisingly disturbing. He disagrees on the use of genetic modification, but only on empirical grounds:
The argument turns on the social benefits of enhancement. Economic modeling has mounted a powerful case that widespread enhancement of IQ would produce a broad range of benefits.…The question ought not to be "what are the costs and benefits of enhancing versus not enhancing", but "what are the costs and benefits of enhancing versus other ways of using the resources needed for enhancement"?
Radcliffe Richards refused to categorically reject the concept of forced sterilization as a solution to social problems, saying that there "is a really serious argument" about the "cost to the rest of society of allowing people to have children when you can pretty strongly predict that those children are going to be a nuisance."
At first blush, it's easy to accept Levy's view that "we will get much better returns for our money by spending it on environmental interventions, here and (especially) abroad, in developing nations." But there is something disquieting, to say the least, about viewing these human interventions simply through the prism of economics. The subjects here are human individuals.
Essentially these philosophers are all proposing that society should improve the IQ of the unfortunate in order to benefit society as a whole, rather than for the sake of the people directly affected. This is exactly what George Annas was referring to as eugenics in the recent discussion about forced sterilization. As he insisted,
This decision needs to be made based on the person's best interests, not the best interests of society or her caregivers.
These are difficult questions, as evidenced by libertarians like Savulescu advocating intervention for the "good of society" (while communitarians uphold individual rights). Savulescu is not a simplistic thinker, and to his credit engages with current issues. His critique of the HFEA, for example, is not without merit, especially when he says they should have insisted on long-term follow-up studies. But he has been pushing a modern kind of eugenics for a long time now, and the indications are that, in his field and especially in the institution he heads, he has shifted the terms of debate.
Finally, what is this "economic modeling" on which the argument depends? The Herald Sun article cites "a research paper by Oxford University ethicists Andres Sandberg and Nick Bostrom [both members of Savulescu's Oxford Uehiro Centre of Practical Ethics], showing that if overall IQs were raised by 3 per cent, poverty rates and the number of males in jail would both drop by 25 per cent and welfare dependence by 18 per cent." A search for the data turned it up in a 2006 paper [pdf], but it wasn't original to them. It was referenced to Herrnstein and Murray, 1994.
That's The Bell Curve, arguably the most controversial best-seller of its era because it claimed to identify racial differences in intelligence and draw policy conclusions from them. Stephen J. Gould, among others, put considerable effort into refuting it. Bob Herbert in the New York Times called it "a scabrous piece of racial pornography masquerading as serious scholarship." The book still has its supporters, obviously, but it's interesting to see it cited at second-hand; perhaps it's now too toxic to be considered convincing. The Uehiro philosophers presumably do not endorse its racism, but they do seem to share its eugenic approach.
The British Court of Protection says it needs further medical and psychiatric reports before it can rule on whether or not a 21-year-old woman with "significant learning disabilities" should be forcibly sterilized. The woman, identified as "P," is scheduled to give birth to her second child this week via C-section. P's mother, who currently cares for her daughter and grandchild, asked that the court order her daughter to be sterilized to avoid future pregnancies.
P's mother made it very clear that her daughter cannot comprehend that she is unable to care for her own children and that future babies will need to taken under the care of the state. P's mother and father express that they will be unable to care for future grandchildren.
"I want the best for my daughter…We are supporting and helping her, bringing up her children and keeping them together as family unit. Obviously we can't carry on supporting more and more children. She doesn't see anything wrong in her behavior."
P's mother said that they tried to get their daughter to take birth control injections after her first pregnancy, but she refused, and became pregnant again soon after. She thus feels that tubal ligation, an irreversible sterilization procedure, is the best course of action.
Judging from the courts decision to delay proceedings, as well as significant buzz in media and comment forums, it seems that many are struck by the enormous implications of sterilizing someone against their will. Although cases involving a mother and children's physical and social welfare should be looked at closely on a case by case basis, the prospect of using public policy to compel the sterilization of a vulnerable individual, or any individual for that matter, should throw up several red flags.
In the past, discriminatory social ideologies have been channeled through the courts to target vulnerable groups that were seen as "socially problematic," and therefore "unfit" to reproduce. State and national eugenics boards, at their height in the 1920's and 30's, facilitated the forced sterilization of tens of thousands. Especially targeted were poor black women in the American South, Native American women, and individuals (many of them children or teens) deemed to be "feeble-minded," of low IQ, or otherwise "mentally defective." These efforts, which extended to Europe as well, falsely and catastrophically attributed social "problems" to inheritable genetics, and justified eugenic intervention as furthering the "greater social good."
Thankfully, it appears that P's case has not followed this discredited script about "good" or "bad" genes. And although the Court of Protection normally deliberates behind closed doors, this hearing was made public (with protections for P's privacy) due to the "public interest" in understanding the case. A key point that should be made clear to all is that any decision to intervene in P's reproductive behavior is made in the sole interest of her personal health and well being - not because she has "learning difficulties." Any other action would be a violation of her human rights and reproductive freedom, and would perpetuate social injustice for others who are cognitively or otherwise differently-abled.
Chair of Health Law, Bioethics & Human Rights at Boston University, George Annas, noted,
"This is eugenics if they are doing this because she's mentally disabled…This decision needs to be made based on the person's best interests, not the best interests of society or her caregivers."
The Court of Protection must tread extremely carefully in its ruling on this case. Questions of whether or not P is cognitively capable of consenting to sexual intercourse must also be addressed. Other contraceptive methods, which are less invasive and reversible, should certainly be seriously considered, as they surely would be for a person without learning disabilities.
The slippery slope of eugenics emerges when attempts are made to control the reproduction of targeted categories of people. Anything less than the most careful and deliberate effort to avoid such missteps would be a failure to learn the lessons of the horrific history of eugenic sterilization.
*To read the author's interview about P's case in Salon Magazine, click here.
When we ridicule "genes of the week" we are usually pointing fingers at the press, or at scientists trying to exploit the press for publicity. We often play it for laughs, though we are well aware that genetic hype can have important and very disturbing consequences, some of which are not immediately visible.
But a case just came to light that might have cost someone two extra years or more in prison.
On December 3rd, 2009, U.S. District Judge Gary Sharpe sentenced Gary Cossey to 6-1/2 years, plus a life term of supervision thereafter, for possession of child pornography. This was a higher than expected sentence, albeit within the broad legal guidelines.
Judge Sharpe chose to reject two different psychological evaluations that found Cossey to be at a low to moderate risk of re-offending, calling their opinions "virtually worthless" because the profession is "all over the board on those issues." Instead, according to the written judgment of the Appeals Court, Sharpe needed "to share a view that's a little different than what you're hearing from your psychiatrists." In particular:
[Judge Sharpe] predicted that some fifty years from now Cossey's offense conduct would likely be discovered to be caused by "a gene you were born with. And it's not a gene you can get rid of."
Sharpe noted that the defendant was in therapy, but was not impressed, saying that:
"[It] can only lead, in my view, to a sincere effort on your part to control, but you can't get rid of it. You are what you're born with. And that's the only explanation for what I see here."
This is eerily reminiscent of the Violence Initiative of the early 1990s, and other biological explanations of crime (as described, for instance, in The Criminal Brain by Nicole Rafter). And, of course, of the eugenic approach that designates certain people, or types of people, as lost causes that society would be better off without.
Where a district court relies on its own scientific theories of human nature to sentence a defendant, as it does here, a finding of plain error is warranted.
(The use of the term "scientific" is overly polite.)
The case has been remanded to a different judge for sentencing. Judge Sharpe has so far refrained from comment, but we are left with a disquieting question: Was he merely more honest than many of his peers? Is this kind of inevitablist, genist thinking common among the judiciary? Or, indeed, among politicians and other opinion leaders?
A secretive group of independent, influential scientists who advise the United States government on science and technology recently released The $100 Genome: Implications for the DoD. Perhaps unsurprisingly, it pays little attention to the larger social and ethical questions raised by such technology.
The group, known as the Jasons, was asked to consider the impact of personal genomics over the next decade and to assess the opportunities and challenges of the field for the Department of Defense (DoD). The report concluded with the following recommendations:
Establish procedures for the collection and archiving from all military personnel DNA samples that are compatible with subsequent genotype determination.
Plan for the eventual collection of complete human genome sequence data from all military personnel.
Arrange for the secure, long-term storage of DNA sequence data.
Prepare for the collection of epigenome and microbiome data when appropriate.
Determine which phenotypes are of greatest relevance to the DoD.
Cooperate with health care professionals to collect and store these data.
Use bioinformatics tools to correlate genetic information with phenotypes to discover linkages between the two datasets that will ultimately allow genotype information to be used productively.
Some critics have begun to raise important concerns about the recommendations. Secrecy News and The Huffington Post both ran articles (1,2,3) raising a number of concerns regarding privacy, exploitation, discrimination, and eugenics.
Steven Aftergood of Secrecy News writes:
What could possibly go wrong? Quite a few things, actually. Besides the risk of failing to maintain the privacy and security of genetic data, the data could be used in unethical ways or their significance could be misinterpreted. ... Acting on genotype information that is not convincingly linked to specific phenotypes could lead to erroneous and detrimental decision making.
Aftergood, quoted in The Huffington Post, also discussed privacy concerns and exploitation:
Questions about control and exploitation quickly become front and center … I think all of us should be concerned about the advancing state of genetic research and its susceptibility to improper or thoughtless use.
It lends itself to corporate control and for-profit exploitation of genetic data, which is the most intimately private information there could possibly be. Your genetic code is more private and more unique to you than anything else in the universe.
While the report does acknowledge the need for “resolution of ethical and social issues that arise from these activities,” it fails to do much more beyond this in thinking about potential implications of gathering DNA from soldiers. A spokesperson from the Pentagon says that it is seeking input from others on the issue. But Ann Finkbeiner, author of a book on the Jasons, suggests that they are highly influential: “My feel for the track record is that they are taken very seriously … and I think a lot of their ideas sort of end up in programs.”
Leilani Muir, forcibly
sterilized by the Alberta
government at age 14.
The University of Alberta's historical connection to state-sponsored eugenics made it an ominously appropriate setting for last week's Living Archives on Eugenics in Western Canada Conference. The event gathered historians, community members and victims to re-examine the history of forced sterilization in the province.
The conference reflected on local eugenics past and present, highlighting the Alberta Sterilization Act (ASA), effective from 1928 to 1972, which led to the forced or otherwise coerced sterilization of 2,800 people deemed "mentally unfit." Leilani Muir, whose successful 1995 lawsuit made her the ASA's most well known victim, spoke on the importance of amplifying voices of sterilization victims.
We've gotta make sure this never happens again because my attitude is if I don't talk about this and keep it out forefront, history will repeat itself in some way because history always does repeat.
Others used the ASA's historical context to frame modern eugenic problems, such as socially based reproductive disenfranchisement of the intellectually disabled. One speaker noted,
We've significantly restricted people's access to sexual and reproductive health information and as it pertains to people with intellectual disabilities, our focus has been largely on prevention by isolation and that seems to be our most effective sterilization strategy in the modern age.
This event's acknowledgement of past eugenics in relation to modern reproductive injustices represents a wider societal responsibility largely unfulfilled in North America. Of the thirty-three US states that sponsored eugenic sterilization programs, only a handful have issued formal apologies; even fewer offer ongoing support for victims.
However, formal political apologies alone fall far short of what is needed to prevent these histories from repeating themselves. Communities should follow Alberta's lead, endorsing public discussion and education that examines modern reproductive and disability rights issues - including the wider social implications of IVF, PGD and trait-selective abortion - in the light of past eugenic follies.
Project Prevention is a controversial U.S. nonprofit that pays $300 to drug addicts who volunteer for long-term birth control, which often means sterilization. It has operated since 1997, originally as Children Requiring A Caring Kommunity (CRACK), just expanded to Britain (at £200), and plans to cover Australia and perhaps Africa.
The British operation, which is funded by a single $20,000 donation from an American expat, has been controversial since at least March. The noise spilled over to Time magazine in April, which quoted a London-based treatment agency as calling Project Prevention "morally reprehensible and irrelevant," and continued in May. The storm reached a crescendo in October, when, one British man accepted the cash for a vasectomy, in a televised ceremony. Some are even reported as accusing the group of "genocide" and, more circumspectly, former UK home secretary David Blunkett said:
"My big worry is that, whatever the good intentions, this money is likely to go straight into the dealer's hands as they buy a £200 tranche of heroin or crack."
In the face of this torrent of criticism, the founder, Barbara Harris, remains extremely sure of herself and somewhat cavalier in her attitudes, for instance saying:
"If they want to tell their doctor, that's their choice - we don't communicate with doctors."
That seems odd: Her organization is predicated on the irresponsibility of the clients, and yet she blithely abdicates any liability to ensure they get proper medical advice. And then there is an infamous comment that she has repeated rather than retracting:
"We don't allow dogs to breed. We spay them. We neuter them. We try to keep them from having unwanted puppies, and yet these women are literally having litters of children."
Some of the publicity may seem a little overblown. After all, precisely one Briton has taken the money (incidentally, he seems not to conform to the stated rules that addicts they pay already be parents), and in 13 years, Project Prevention has paid for only 1319 women to have tubal ligations, as well as for 54 vasectomies and 2227 clients who adopted other forms of long-term birth control, such as IUDs, Depo-Provera, etc. That hardly seems like an efficient use of "half a million dollars a year in donations," from a donor base that includes the billionaire Republican Richard Scaife.
Women with substance abuse problems need drug treatment, decent jobs, educational opportunities, mental health services, and childcare services. It is the lack of these services and the denial of human dignity, which exacerbate conditions of poverty, racism, social status and gender discrimination. These conditions can lead to women seeking out substances to medicate pain. Therefore, it is oppression that needs to be eliminated, not the reproductive capacity of women.
Cover from a 1934 film on the "secret" horrors of forced sterilization
Darlene Gabler, a 64-year-old woman from Alberta, Canada, is suing the provincial government for sterilizing her in 1961 without her knowledge or consent. Gabler is one of over 2,800 victims of the Alberta's Sexual Sterilization Act, which between 1928 and 1972 irreversibly sterilized children and teenagers (4,700 people in total) deemed "mentally defective" and/or "incapable of intelligent parenthood."
Up until the late 1970s, 30 U.S. states, two Canadian provinces and at least five other countries adopted programs similar to Alberta's, forcibly sterilizing tens of thousands deemed "reproductively unfit." Despite efforts by disability rights activists, historians of eugenics and others, public awareness and education around these atrocities has been seriously lacking in the decades since.
It is disturbing that Ms. Gabler's case and others like it seem to be among the few items "press-worthy" enough to shed light on the horrors of past compulsory sterilization practices in North America. On top of that, several local press outlets did miserable jobs covering Gabler's case, running simplistic, even stigmatizing headlines like "Sterile Woman sues Alberta gov." Unfortunately, media coverage of these cases usually concentrates on the details of individual legal cases, and fails to convey the deeper eugenic contexts behind them.
While justice for victims like Darlene Gabler is overridingly important, the wrongs of state-sponsored sterilization programs exceed the legal frameworks in which they are too often framed. Relegating these crimes to categories such as "assault" or "medical misconduct" runs the risk of boiling them down to quantifiable individual harms that can be righted in a courtroom. Meanwhile, the underlying iniquities of eugenics in general, and the fact that these ideologies persist in many forms today, remain unacknowledged.
Although the Alberta government offers some monetary reparations to its victims, placing it ahead of the curve in taking formal responsibility, a "put the past behind us" mind-set endures in other parts of the community. The University of Alberta still awards the prestigious MacEachran Scholarships in honor of the late Professor Emeritus John M. MacEachran, an outspoken eugenicist and chair of the Alberta Eugenics Board from 1929 to 1964. Public objections to this have been admirable but few [1, 2].
It is imperative that state and national governments, universities, and public voices alike more widely acknowledge past sterilization programs. The word "eugenics," when rarely mentioned in the media or in public education or discourse, is too often conveyed as something that happened a long time ago in a far-off place. Continuing to bury local histories of eugenic practices like forced sterilization will further obscure the thousands of victims who have yet to come forward as well as the memories of those who never had that chance. Silencing those voices also denies the rest of us the opportunity to remember our collective past, and could condemn us to repeat it.
The Nobel Prize in physiology or medicine has been awarded to Robert Edwards, for his work on developing IVF. (Edwards' partner, Dr Patrick Steptoe, died in 1988 and is thus not eligible.) Immediate reactions were, overall, strongly favorable: "You would have to be a very determined killer of joy — or a Vatican priest — to begrudge Professor Robert Edwards his Nobel Prize." Soon, however, the announcement became the basis of wider speculation and analysis.
"The impact on society has been profound," said Lori B. Andrews of the Chicago-Kent College of Law, who studies reproductive technologies. "The creation of a child outside the body for the first time has had scientific and personal implications far, far beyond the 4 million children who have been born through in vitro fertilization."
Arthur Caplan (quoted in several articles) added: "Edwards unleashed a social, ethical and cultural tsunami that he could not have predicted and I don't think anyone at the time could have anticipated." He also speculated:
"In the 20th century, I would argue the biggest debate in America in terms of reproduction has been abortion. I believe in the 21st century, Edwards's discoveries will make the issue of designing our descendants — that is, trying to create children who are stronger, faster, live longer, that sort of thing — that's going to become the biggest issue in the first half of the 21st century."
"The ramifications of Edwards's breakthrough have really only begun to be felt, because the race for biomedical enhancement will be in the 21st century what the space race was in the previous century. I don't think we'll get to the point of permanently changing the human genome, but we will be manipulating ourselves at a genetic level ... and IVF allows us to do that."
Without being very specific, Nita Farahany, a member of the Presidential Commission for the Study of Bioethical Issues, told Jonsson that IVF "could raise issues that may be relevant to the work of the commission."
Robin Marantz Henig published an Op-Ed in the New York Times that cast a rather rosy light on these possibilities:
It has also opened the door to new controversial concepts: "designer babies," carrying certain selected genes; pre-implantation genetic diagnosis, which allows the possibility of choosing the baby's sex; and human cloning. ...
Science fiction is filled with dystopian stories in which the public blindly accepts destructive technologies. But in vitro fertilization offers a more optimistic model. As we continue to develop new ways of improving upon nature, the slope may be slippery, but that's no reason to avoid taking the first step.
Edwards, it seems certain, would agree. Unfortunately, he is now too ill even to understand that he has received the award, but in 1999 he said:
"Soon it will be a sin of parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children."
In 2003, he told the London Times that he supported reproductive cloning, as long as it was safe, and sex selection, and stood by his long-standing admiration for the maverick Italian Severino Antinori. (He has enthusiastically supported the purported cloner Panayiotis Zavos as well.) His most provocative quote deliberately extended the agenda:
"It was a fantastic achievement but it was about more than infertility. It was also about issues like stem cells and the ethics of human conception. I wanted to find out exactly who was in charge, whether it was God Himself or whether it was scientists in the laboratory."
And what did he conclude? "It was us."
That's eerily reminiscent of the unscrupulous, and eventually jailed, fertility doctor who claimed "God doesn't make babies, I do" (quoted on p. 78 of Lori Andrews' The Clone Age). It also brings to mind the "Octomom"
controversy, which led to some calls for tightening regulations. And
the push last year to sell the selection of physical traits such as eye color.
Undoubtedly the achievement of Steptoe and Edwards is worth celebrating, for the many otherwise infertile people who have benefited. But a sober assessment of the implications, and the potential for abuse, is essential for context. This is not just a dual-use technology; it's already one with multiple applications, and some of them involve serious complications, both for the people directly involved and for society at large.
Here's a headline designed to grab attention: "Building a Brighter Kid: Consider IVF." It appeared in Time Healthland on October 1st. It's a classic case of a headline that betrays the writer of the article, and one that could easily become the source of an urban legend. So let's try to stop it right here.
IVF does not negatively affect academic achievement
Radio Iowa reported on this under the headline "Study finds no adverse impact on in vitro babies." The Los Angeles Times went half a step further:
Children conceived by IVF score well, often better than peers, on academic tests, study finds
Why would that be? The researchers, who studied 423 IVF-conceived children aged 8 to 17, plus 372 of their non-IVF peers, did attempt to control for socioeconomic and environmental differences, but acknowledged that they may not entirely have succeeded. Indeed there is a quote in the Time article itself from fertility specialist Dr Robert Stillman:
"Those fortunate enough to be able to afford IVF in an arena where there's little insurance coverage may very well have the means to provide a high level of education for their children."
"We are not trying to imply that [in vitro fertilization] leads to better scores," lead author Bradley Van Voorhis told the Daily Iowan. And there is good reason to think that the Time writer, Bonnie Rochman, understood this. Her article ended:
You might be interested to learn that the researchers found that single babies performed better than twins, who performed better than triplets — if only ever so slightly. But even the triplets performed better than the average score of children conceived the old-fashioned way.
Still, that's no reason to rush into IVF if you don't have to. Says Stillman: "This is an argument not for doing IVF to have brighter kids but for having insurance coverage so everyone can have a child if they're having trouble getting pregnant."
But that's not what the headline writer picked up on. Instead, we have an implication that "building" smarter children to order is not only defensible but feasible. And that is seriously misleading.
There have recently been several disturbing indications in Europe of racism with a genetic twist:
In Holland, Patrick de Bruin, a neo-Nazi, donated sperm on condition that it should only be used for white couples: "I want as many blond blue-eyed children to be born as possible." Two sperm banks initially accepted his conditions, though others turned him down.
In Sweden, Per T K Wahlberg, a minor politician, claimed that Africans have a "child rape gene." This was too much even for the far-right party to which he belonged, and he quit.
In Germany, Bundesbank board member Thilo Sarrazin told a newspaper that Jews share a distinguishing gene, and Basques share another; he also claimed that Muslims could not or would not integrate into western societies. He was promoting a book, Germany Abolishes Itself, and got so much publicity that he was forced to resign.
Ironically, in Israel, comments about "the Jewish gene" have been made by leading politicians without causing any comparable fuss. Also, it must be noted, without scientific justification. In August, Eli Yishai, currently one of four Deputy Prime Ministers, told the Jerusalem Post:
"A convert, if he converts through the Orthodox, he has the Jewish gene. If he doesn't convert through the Orthodox, he doesn't have the Jewish gene. As simple as that."
The idea of a "gene for Judaism" or an African "gene for rape" may be absurd, but it is also potentially dangerous, since it links crackpot racism with overstated genism. DNA has been promoted as an indisputable identifier in criminal matters, not to mention the ancestry and disease-prediction industries. Early last year, we saw calls for a Turkish politician to have his DNA tested to prove he was not Armenian. What's next? DNA testing for immigrants? For tourists?
Thus far, the mainstream reaction has been harsh criticism of racist statements. But Sarrazin's book is flying off the shelves (four printings total 80,000 copies), and he has his defenders, as does de Bruin (see comments here) and even Wahlberg (comments). There is a continual need to remind people that the well-meaning racists of the early twentieth century gave rise to the genocidal maniacs of mid-century. Eugenics is not far beneath the surface of modern politics.
Later this month, University of Minnesota researchers plan to enroll volunteers at the Minnesota State Fair in what they're calling the "Gopher Kids Study." They are looking for 500 pairs, each consisting of a child age 1 to 11 and a biological parent. The idea is to investigate the genetic features of "normal and healthy" children, by collecting body measurements, saliva, and optional blood and fingernail samples for genetic analysis.
What's wrong with this study? Almost everything.
First off, the study's consent form [PDF] is disgracefully inept. It lacks, among other things, specific intentions or limitations for what the samples can be tested or used for. It states that participants' DNA samples will be "kept indefinitely" and made available only to "study staff," though no institutions or individuals (aside from the two head researchers) are specified by name. These two critical concerns about to what ends and by whom this information can be used, dispersed, or profited from are left egregiously unspecified.
Research that uses your and your child's DNA might be done a long time after they are collected…[and] will be used for research by Logan G. Spector, Ph.D. and his associates for the purposes of learning more about genetics in growth and development.
Secondly, the chaotic and otherwise jovial atmosphere of a state fair could not be further opposed from a clinic, lab, or other appropriately focused setting for gaining fully informed consent. The frivolous state fair surroundings paired with the study's colorful, kid-friendly marketing will (by design, no doubt) distract from the fact that handing over your child's DNA is a serious, multi-dimensional decision. The public should be enabled and encouraged to realize that there is more at stake in such a decision - privacy, future exploitation, and the like - than some university swag and free tickets to next year's fair.
Finally, the stated objective for the study is ambiguous at best: "To understand how genes contribute to children's normal health and development." Aside from being scientifically meaningless, this inquiry suggests that there is a genetically defined ideal for normal, healthy children. Such a notion recklessly capitalizes on the growing public obsession with genetically deterministic models of health - a harmful trend evidenced in recent controversies around direct-to-consumer genetic testing and prenatal trait selection.
Activities that search for "good" and "normal" genes at state fairs have a troubled history. Recall the "Fitter Family" contests of the early 20th century, which were explicitly eugenic attempts to judge human stock like cows and pigs and chickens.
Genewatch UK marked the 10th anniversary of the Human Genome Project announcement by publishing an extraordinary History of the Human Genome that includes important current policy implications. It runs to 17 tightly-packed pages, with a further 12 pages of references (303 of them). The pdf is available here, with a summary in Genewatch’s press release here.
The timeline reaches back to 1918, when "Eugenicist Ronald Fisher publishes a mathematical paper showing how common diseases might be caused by genetic susceptibility to environmental exposures," which becomes the initial basis for calculating the "heritability" of diseases (later criticized by Richard Lewontin and others). History of the Human Genome covers in detail the tobacco industry's attempts to obfuscate the links between smoking and cancer by arguing for genetic predispositions both to smoke and (separately) to get cancer. It also notes many other attempts to find genes for cancer, obesity, diabetes and other diseases.
The report connects these essentially false theories with the massive "gravy train of funding for the human genome" -- and with the centralization of medical records, systems for storing babies' DNA at birth, and also the research goals of companies such as 23andMe:
Billions in taxpayers' money has been wasted in both Britain and the USA, and medical privacy has been jeopardised, in an attempt to create the vast databases of electronic medical records linked to DNA that will supposedly allow scientists to 'predict and prevent' disease. ...
The private healthcare and food industries are promoting a new vision of healthcare in which people will have their genomes sequenced in supermarkets and stored on mobile phones. Healthy people will be marketed bar-coded functional foods - such as cholesterol-lowering margarines and probiotic yoghurts - and other health tests, advice and treatments, which are claimed to be tailored to their genetic risks of future diseases. Sequencing everyone's DNA linked to their name and address stored in electronic medical records would also allow the Government to track every individual and identify their relatives.
"Vested interests have fatally corrupted the medical research agenda. Companies want to data-mine your DNA and market healthy people misleading risk assessments and associated products: this is not medical research. Having your genome sequenced is not good for your health: the big risks for most diseases are not inside your genes but in the world outside."
BeautifulPeople.com has launched a fertility introduction service to help members and non-members alike procreate. There are no financial benefits for us in doing so - we are simply responding to a demand for attractive donors. Every parent would like their child to be blessed with many fine attributes, attractiveness being one of the most sought after. For a site with members who resemble Brad Pitt, George Clooney and Angelina Jolie you can imagine the demand.
The website’s founder, Robert Hintze, also notes “Initially, we hesitated to widen the offering to non-beautiful people. But everyone - including ugly people - would like to bring good looking children in to the world, and we can't be selfish with our attractive gene pool."
There is an almost casual reference to "a future where humans break off into two species: the Haves, who have superior intelligence and can live for hundreds of years, and the Have-Nots, who are hampered by their antiquated, corporeal forms and beliefs." (Lee Silver used the terms GenRich and Naturals to describe something very like this, but that was back in 1997 -- before Google was even, pardon the pun, incorporated -- so new labels are required.) The article continues:
Of course, some people will opt for inadequacy, while others will have inadequacy thrust upon them. Critics find such scenarios unnerving because the keys to the next phase of evolution may be beyond the grasp of most people.
Well, some critics actually object because this entire approach to the future reeks of self-indulgent privilege, greed and exploitation. But there is a deeper and more important point to be made.
Another term that is not included in the article is eugenics. Arguably, this is because there is in fact no proposal to "improve" humanity, merely a goal of "transcending" it. But that's nit-picking. The eugenic impulse has always been one of control, of domination, of decisive intervention into the human condition, by the powerful of this world (who see themselves as deserving, intelligent and fundamentally moral) on behalf of the deserving, intelligent and fundamentally moral.
Modern techno-utopians may not call themselves aristocrats, but they are -- at best -- following the same principles of paternalistic governance. There are those, however, who seem to have given up on the unwashed masses. Andrew Orlowski, a techie journalist who is a long-standing critic of "utopian nonsense," says:
"The Singularity ... is rich people building a lifeboat and getting off the ship."
For some of them, that's a metaphor; for others, it's actually a plan. Billionaire Singularity enthusiast Peter Thiel (PayPal, Facebook) has tossed half a million bucks to the idea of "seasteading" -- building new off-shore city-states.
Techno-utopians are the heirs to the eugenic tradition. Their methods are not those of Francis Galton, who advocated the breeding of aristocrats, nor are they those of the Eugenics Movement of the early 20th century, with its advocacy of selective sterilization. But the dissatisfaction with the human condition and the determination to overcome it is the same. Some of these people are rich, smart, powerful and dangerous. They may be fun and they may be friendly -- they may even be out to save the planet -- but they definitely bear watching.
The legacy of 20th-century eugenics is still with us, and two complementary new initiatives have just been announced to help us confront it.
North Carolina, which has been slowly addressing the moral obligation to compensate victims of involuntary sterilization, has appointed an advocate for them: Charmaine Fuller Cooper is the new executive director of the N.C. Justice for Victims of Sterilization Foundation, which has start-up funding of $250,000. "I aim to give them a voice," she wrote, "so nothing like this ever happens in state government again." Her official charge is "to develop a plan to provide justice and compensate victims of the so-called eugenics program, which forcibly sterilized more than 7,600 people between 1929 and 1974."
In Canada, the Social Sciences and Humanities Research Council of Canada has awarded a million-dollar grant for "Living Archives on Eugenics in Western Canada" [pdf]. A team of 24 researchers from 14 institutions, plus 12 other partner institutions, will explore the history of Alberta's eugenics laws, which operated from 1929 to 1972. Institutions involved range from local universities to the Edmonton Police and the Edmonton Public Library, as well as the Universities of Copenhagen and North Carolina, the Public School Boards' Association of Alberta, the American Association of People with Disabilities, and many more.
They intend to accumulate documents and place them in the public domain, along with first-hand testimony from sterilization survivors. The lead investigator, University of Alberta professor Robert Wilson, says they don't yet know what they will discover:
"A number of us think it's really timely to look at these things now we've got an appropriate amount of distance. But it's important that this work be done in the next five or 10 years because the people who we could use as major sources and the people who want to tell their own stories [...] are getting old."
Those who cannot remember the past are condemned to repeat it, said George Santayana. The surviving victims deserve help, and we all need to remember what happened.
Rebecca Skloot’s just-released first book, The Immortal Life of Henrietta Lacks, has rocketed to the number 5 spot on The New York Times list of hardcover nonfiction best-sellers. Skloot’s deeply researched and riveting narrative ranges over a treasury of fascinating yet often painful stories behind the first “immortal” human cell culture.
The cell line known as HeLa (the first letters of the first and last names of the person who was its source) is amazingly robust. As long as it’s got some culture medium, it just keeps on dividing. HeLa was derived in 1951 from cervical cancer tissue that doctors took without consent from a 31-year-old African American woman who died of the disease in the “colored ward” of the Johns Hopkins charity hospital in Baltimore. For several decades, her name and identity were all but lost, and her family members remained unaware that her cells had become a foundation of medical research. As one of Mrs. Lacks’ children put it many years later, “If our mother so important to science, why can’t we get health insurance?”
Immortal Life is being deluged with well-deserved attention. The New York Times, for example, published an excerpt and three different reviews, all of them glowing. Reviewer Dwight Gartner calls it a “thorny and provocative book about cancer, racism, scientific ethics and crippling poverty.” Lisa Margonelli praises its thoughtfulness about “the `real live woman,’ the children who survived her, and the interplay of race, poverty, science and one of the most important medical discoveries of the last 100 years.” Margonelli also voices appreciation of the book’s “critique of science that insists on ignoring the messy human provenance of its materials.”
And science writer Denise Grady points out that although practices and ideas about informed consent have changed in the last 60 years, “patients today don’t really have any more control over removed body parts than Mrs. Lacks did. Most people just obediently sign the forms.”
As these comments suggest, a number of the topics raised by The Immortal Life of Henrietta Lacks resonate with the concerns of Biopolitical Times. One of the book’s historical vignettes, on the early development of cell culture, provides an intriguing parallel to today’s biopolitical dilemmas.
Skloot recounts the many years of effort spent by scientists in the early 20th century to learn how to keep tissues alive outside the body. In 1912, a scientist named Alexis Carrel succeeded in growing a sliver of chicken-heart tissue in culture, and asserted that the cells were immortal. The feat was greeted as a medical miracle. Contemporaneous headlines called it a “way to avert old age” and speculated “Death Perhaps Not Inevitable.” The culture medium Carrel had concocted was referred to as “an elixir of youth” and a magazine “claimed that bathing in it might make a person live forever.”
And that’s not all. Skloot points out that Carrel, who at age 39 won a 1912 Nobel Prize for his contributions to organ transplantation and techniques for suturing blood vessels, was an avid supporter of eugenics. He “wasn’t interested in immortality for the masses” – he presented his work on organ transplantation and life extension as “ways to preserve what he saw as the superior white race, which he believed was being polluted by less intelligent and inferior stock, namely the poor, uneducated, and nonwhite.”
Carrel’s 1935 book, Man, the Unknown, sold more than two million copies and was translated into 20 languages. Thousands turned out for his talks, where police in riot gear were sometimes needed to keep order. And “through all of this, the press and public remained obsessed with Carrel’s immortal chicken heart.” Media accounts “promised the cells would change the face of medicine, but they never did.” Carrel died in 1944 awaiting trial for collaborating with the Nazi.
Cell culture, it seems in retrospect, was to the 1910s what gene therapy was to the 1990s and stem cells to the 2000s. All were important scientific developments that, notwithstanding their promise, were more than marginally connected to hyperbolic claims (1, 2), violations of ethical practice (1, 2), and high-profile scientists whose distinguished reputations were marred by controversy and scandal (1, 2).
Two years ago, direct-to-consumer (or personal) genomics was the all the buzz. Media coverage was rampant, often the result of 23andMe's remarkable PR blitz of celebrity-laden "spit parties" in Davos and New York. Flash forward to the present: coverage is slim and the companies are suffering, including layoffs and one major bankruptcy. To where does the fledgling industry go from here? Three companies offer contrasting examples: The most visible one may be using a flawed business model and product. The oldest, and bankrupt, one has a troubling track record of privacy and consent. And a new one takes a new, and potentially problematic, approach.
Personal genetics was the next big thing: what celebrities and moguls were buying today, the masses would be buying tomorrow. 23andMe and rivals such as [bankrupt] deCODE Genetics, Navigenics and Pathway Genomics would do for DNA what Google and Amazon did for the internet. The genetic future was now.
Eighteen months on, that future stands postponed. Many doctors have rejected the hype about a new era of personalised medicine, arguing that most genetic screening is as likely to mislead as to inform. Neither have the public taken to consumer genomics: 23andMe, the market leader, has signed up only 30,000 subscribers in two years and has endured two rounds of redundancies....
Have science entrepreneurs such as [23andMe's Anne] Wojcicki and Kári Stefánsson, deCODE's founder and chief executive, jumped into a market for which the world is not ready? Will their companies prove to be the genome's Googles and Amazons, or its Boo.com?
I've long been of the mind that, just as the traditional business model of newspapers is to get revenue not from readers but from advertisers, personal genomics companies see the potential profit not from the consumers themselves but from the compiled databases--likely in the form of selling access to them. One key question is, just how reliable is this data? For example, 23andMe uses consumers' self-reporting:
But there is disagreement about the scientific worth of such a database. Stefánsson thinks [23andMe's data] will be useless because self-reported traits are unreliable and customers will object to the release of information. However, 23andMe says that the plan is already working and has led to the discovery of genetic variants linked to traits such as the curliness of hair. If this approach can be repeated with, say, responses to drugs, it's easy to see how a pharmaceutical company might bite.
This strikes me as wishful thinking at best. Consumers can likely self-report the curliness of their hair with significant accuracy. But I am skeptical about their ability to do the same for reactions to drugs, considering, for example, the remarkable (and rising) effectiveness of placebos.
What interests me more is the fate of the databases. As pressures to turn a profit mount during the Great Recession, and as companies such as deCODE, which recently filed for bankruptcy protection, are saved by new investors and subsequently restructured, what becomes of the data?
23andMe insists it will never release identifiable information to a third party without the explicit consent of the person concerned. "I'm always careful when I say we're going to have a revenue stream from the database," Wojcicki says. "We will not sell individuals' data, but the database as a whole will have enormous value."
Explicit, informed consent when purchasing a product online is difficult to truly obtain. When was the last time you read a user agreement when installing software?
Stefansson and deCODE have been adamant that the change in ownership will not affect how the company uses data from customers of its deCODEme service, or the security of that data, but this is an issue that will continue to bear watching. As I’ve written elsewhere, deCODE’s new owners remain (legally) free to alter or expand their use of genetic data within a range of allowable uses.
The company’s announcement also refers in several places to genomic sequencing, and as Jocelyn Kasier first reported last fall, deCODE is planning to sequence the complete genomes of 2500 individuals from its Icelandic database by mid-2011 as it continues to search for the rare variants that may contribute some of the so-called “missing heritability” to common diseases and traits. According to Stefansson, deCODE “will not need to recontact these individuals for consent because their original consent agreements cover whole genome sequencing.”
As Stefansson and others continue to note, genomic research has already begun the transition from genotyping to whole-genome sequencing. Moving from examining a handful – even thousands – of an individual’s genetic markers to the sequencing of his or her entire genome creates the potential to understand that individual in much greater detail. It also carries with it a new and expanded set of considerations and risks that should impact any informed consent process....
What I do know is that deCODE has a history of aggressively interpreting when and where individualized informed consent is not required. The failed Icelandic Health Sector Database, which deCODE was instrumental in designing, relied on the now-discredited principle of “presumed consent.”
Just today, The New York Times profiled Counsyl, a new entrant into the field that is just now moving into the public eye. It explicitly targets prospective parents, arguing that preconception genetic testing can prevent the transmission of some diseases. In fact, the company (among whose advisors and investors in Henry Louis Gates (1,2)) frames their work as a "Campaign to End Preventable Genetic Disease."
To their defense, Counsyl emphasizes and currently tests for fatal and serious genetic diseases (although I am admittedly unfamiliar with many of these rare conditions). Furthermore, it backs up its argument that genetic testing is a right by offering financial aid for those who can't afford the $350 test, emphasizing that "Underserved groups and families with a history of genetic disease will receive priority."
But on the other hand, Counsyl makes a couple of significant misrepresentations. Its website says "Everyone is supposed to get genetic testing before pregnancy," even though the American College of Medical Genetics (or ACMG, who is cited) makes more cautious recommendations [PDF] about a limited number of diseases. Moreover, the ACMG recommends [PDF] that "A knowledgeable professional should be involved in the process of ordering and interpreting a [direct-to-consumer] genetic test." Finally, as the Times article notes, "The company calls its product the Universal Genetic Test, for example, even though there are thousands of genetic diseases, not just the 100 Counsyl tests detect."
More troubling is the eugenic potential of a direct-to-consumer genetic test aimed at potential parents. Although Counsyl currently emphasizes serious diseases, it is foreseeable that it will seek to expand its customer base by adding less serious--and even nonmedical--conditions. Moreover, its financial interests align well with those of the $3 billion baby business:
The test is already offered by more than 100 fertility clinics around the country...
Fertility centers have an economic incentive to promote the test because one of the best ways to avoid having a baby with a genetic disease is to test embryos created by test-tube fertilization before implanting them. This pre-implantation genetic diagnosis costs $3,000 or more, in addition to the roughly $10,000 fee for in vitro fertilization.
23andMe may have a defective product, despite its publicity. And deCODEme may raise serious privacy concerns. But Counsyl may represent the next step toward a consumer driven, technologically based, new eugenics.
State money that was allocated during the summer for the benefit of sterilization victims still has not been spent, and no substantive progress has been made on a special foundation that is supposed to be established.
The General Assembly included $250,000 in the 2009-10 state budget to set up the foundation, which eventually could be used to pay financial reparations to surviving victims of a state-sponsored eugenics program that lasted from 1929 into the 1970s.
It's a small amount of money but a historically significant act - it was the first time that the legislature took a formal step toward reparations for sterilization victims. Two of the state's biggest advocates for such reparations are state Reps. Larry Womble and Earline Parmon, Democrats from Winston-Salem.
Although the legislature authorized the money, it is now midway through the budget year and nothing of substance has been done. "There's not an office. There's not a hiring. It's all still in progress," said Jill Lucas, a spokeswoman for the N.C. Department of Administration, where the foundation will be housed....
More than 7,600 people were medically sterilized over the course of the eugenics program, usually because they were deemed to be mentally. disabled or sexually promiscuous. The state has estimated that about 2,800 victims are still alive, but it would be difficult to track them all down. [State Rep.. Larry] Womble has called for giving each living victim a reparation of $20,000 at a potential cost to the state of $56 million.
In 2010, North Carolina should finally live up to the promises of help it has made for more than six years to the victims of this state's forced-sterilization program. Little has been done, even though the legislature approved a $250,000 allocation this past summer to set up a foundation to study compensation for them. Gov. Bev Perdue should follow through on her campaign promise to help these victims....
The colossal injustice of this program, which was fueled by self-righteousness and bigotry, shamed our proud state. We should all feel obligated to bring some measure of comfort to the victims.
The naming of a new park after noted eugenicist William Shockley has drawn international attention to the small town of Auburn, California.
Shockley, with two others, won the 1956 Nobel Prize in physics for inventing the transistor. In later years, however, he devoted much of his time and energy to genetics, work that he regarded as more important than his role in launching the semiconductor industry. He insisted that African Americans were less intelligent than whites, and suggested paying people with IQs less than 100 to be sterilized. He died in 1989.
His widow, however, lived until 2007, and bequeathed 28 acres to Auburn for a park, stipulating that it be named "Nobel Laureate William B. Shockley and his wife Emmy L. Shockley Memorial Park." (He never lived there, but the family had ties with the area; the town already has Shockley Road, Shockley Court and Shockley Woods Court.) The local Park District accepted the gift in March, which provoked quite a local outcry.
On August 31st, the Wall Street Journal picked up on the story; so did the Canadian Broadcasting Corporation. And now the NAACP has weighed in. Their local branch is on record as supporting efforts to "prevent the Auburn community from bearing the stain of racism." The District, however, insists that the name is a done deal.
Several states have issued formal apologies for past eugenics abuses, but how to acknowledge and learn from the past remains controversial. Nearby Sacramento has renamed a high school and a park that used to commemorate the prominent eugenicist Charles M. Goethe, but and the arboretum at the California State University campus there, which he helped develop, still no longer bears his name.
The campus does have a website on the history of eugenics in California, and in 2005 hosted a conference on the subject. That included a reception at the Julia Morgan House, which Goethe's bequest had designated as a eugenics museum; he would have been disappointed by the critical materials assembled.
Perhaps some similar permanent historical exhibit would help Auburn out of the unfortunate bind the town is now in.
But the surge in sperm donor applicants doesn’t mean more men are actually profiting. In this business, only the best and the brightest sperm ever make it to market.
When I asked Scott Brown at California Cryo [International in New York] about the basic requirements of being a sperm donor, it started off pretty basic. You have to live near the facility (you’ll be going there a lot), you have to be between 19 and 39, and you have to be in good general health.
But you also have to be 5’10 or taller, go through a series of interviews, take numerous semen and blood tests, submit a family history that goes back at least 3 generations, and have graduated from or be enrolled in a 4-year university. Oh, and the competition is stiff. Most of the accepted donors have gone to places like Stanford, Princeton, Yale, and UCLA.
“It’s easier to get into Harvard than Cryo,” Brown joked. “We have a lot of initial window shoppers.”
By the end of the screening process, only 1% of applicants ever see their sperm on Cryo’s sales rack....
It may seem eugenically unfair (after all, some apples do fall far from the trees), but sperm banks are like any other business, and competition has only gotten tougher in recent years. For starters, advances in technology have made it easier for couples who are reproductively challenged to conceive without hitting up the banks.
“The biggest challenge for us is that the science is always improving,” says Brown. “People who would have been our clients 5 years ago aren’t anymore.”
As the author hints, the result is just more eugenic pressures on getting the "best" sperm.
Update (Aug. 19): A new cartoon from The New Yorker:
Although the American Eugenics movement ended over 50 years ago, aspects of eugenic thinking continue to pop up from what seems like out of nowhere. Here are a few notable examples from the past few weeks.
• In late June, a Tennessee news station reported on Project Prevention, a non-profit that offers $300 cash to drug and alcohol-dependent adults to induce them to use long-term or permanent birth control. Similar to the C.R.A.C.K. program a few years ago, the moral and conceptual push behind this effort is to prevent children from being born with ravaging drug dependencies, although some studies have shown that the long term effects of prenatal drug exposure are not as significant as the epidemic predicted in the 1980s. This is not to say that maternal drug use is of no consequence to a developing fetus. Rather, it is to say that this effort to keep certain populations from reproducing may have less to do with any evidence-based concerns for child health and more to do with stereotypes that can create a false and overly broad license to limit others’ reproductive capabilities. Certainly all men and women should have access to birth control on their own terms. But paying drug-dependent individuals $300 to, in many instances, irreversibly sterilize themselves may very well fall in the shadow of past eugenic abuses.
• Fox and Friends host Brian Kilmeade went on an odd rant concerning a research study from Finland and Sweden showing that marriage correlates with a decreased likelihood for developing Alzheimer’s. From Kilmeade’s perspective, the study results do not apply to Americans because Swiss and Finns have “pure genes” and a “pure society” since they marry each other, while Americans intermarry with “other species and other ethnics.”
• Lastly, as a more disputed example of this trend, Supreme Court Justice Ruth Bader Ginsburg was quoted in a New York Times interview in a manner that some – particularly right wing commentators such as Jonah Goldberg and Rush Limbaugh – have interpreted as revealing her belief that abortion might be used to curb the growth of undesirable populations. Discussing Harris v. McRae, the 1980 ruling in which the court upheld the Hyde Amendment, which forbids the use of Medicaid to pay for abortions, Ginsburg said,
Frankly I had thought that at the time Roe was decided, there was concern about population growth and particularly growth in populations that we don’t want to have too many of. So that Roe was going to be then set up for Medicaid funding for abortion. Which some people felt would risk coercing women into having abortions when they didn’t really want them. But when the court decided McRae, the case came out the other way. And then I realized that my perception of it had been altogether wrong.
Surprisingly, interviewer Emily Bazelon did not follow up on this statement, so it’s not entirely clear what she meant. Others have argued that Ginsburg’s remarks are about right wing perspectives on abortion during the 1980s. The bottom line is that her comments just aren’t that clear. Ginsburg is a long-time supporter of abortion rights; before becoming a Supreme Court justice, she was an ACLU litigator. Since some abortion rights supporters in the past – not to mention a former Supreme Court Justice – have endorsed a eugenics worldview, the Goldberg/Limbaugh interpretation would not be unprecedented. Let’s just hope that Justice Ginsburg decides to set the record straight.
In 1927, involuntary sterilization was legitimized by the U.S. Supreme Court, in the notorious case of Buck vs. Bell, which stains the reputation of the great jurist Oliver Wendell Holmes. Technically, that decision still stands, though the laws it upheld have been overturned.
President Obama was absolutely correct when he said that "justice isn't about some abstract legal theory or footnote in a casebook, it is also about how laws affect the daily realities of peoples lives," and went on to describe "empathy" as "an essential ingredient for arriving at just decisions and outcomes." In today's Los Angeles Times, Michael Hiltzik pushes back hard against criticism of "empathy" as a qualification, using Buck vs. Bell as his case study:
Certainly Holmes' background showed. His upbringing as the son of an eminent Boston physician, his Harvard education and experience as a commercial lawyer arguably blinded him to the humanity of those whose lives fell outside the scope of his experience.
Supporters of eugenics were often distinguished people. But they were arrogant and blind to the worth of (some) others. That's a continuing problem; empathy is a good antidote.
If eugenics makes a come-back, it will likely be as a consumer option, which explains why it tends to be championed by libertarians. A recent report, however, is raising the specter of old-fashioned, state-sponsored eugenics, and doing so from what appears to be a thoroughly libertarian perspective.
The report is from the Citizens' Council on Health Care (CCHC) in St. Paul, MN, and written by its President, Twila Brase. It focuses on the practice of testing the DNA of newborns and keeping the results on file, often without fully informed parental consent. As a consequence, Brase speculates, the government may soon have enough data about individuals to make genetically-based decisions about who would be a "burden on society." Given that, her logic goes, might not some see it as in society's interest at least to sterilize them?
Brase is a committed opponent of "socialized medicine" (video here of a "Tea Party" speech) who recommends that genetic screening programs be privatized as a "protective strategy." Clearly libertarian, then, in her general approach; but worried about eugenics. What gives?
There is no contradiction: Brase's concern is with what some call "negative eugenics" -- government programs to discriminate against, sterilize (or outright murder) the so-called "unfit." The CCHC report does a fine job of relating modern privacy concerns about newborn genetic screening to the sordid history of negative eugenics, but says nothing about "designer babies" or "improved" humans, the so-called "positive eugenics" that some advocate today.
The originator of the term "eugenics," Francis Galton, was in the latter camp. He wanted to improve humanity by selective breeding, and was joined by others who believed these practices would make life better. Eugenics was not, historically, an exclusively right-wing or left-wing movement. It was supported by Fascists and by Socialists; and especially by large numbers of the people in power early in the twentieth century -- Presidents and Supreme Court justices and heads of major universities.
Modern progressive opposition to eugenics is rooted not only in fear of abuse but in notions of fairness, equality and the worth of all people. We can agree with Brase on parental consent and privacy issues without endorsing all her concerns about government. In fact, progressives including George Annas and Abby Lippman (both cited in the CCHC report) have long raised concerns about the expanding number of genetic variants for which newborns can be screened, and about the need for informed parental consent.
If genetic screening does become a seriously useful predictive tool, which is by no means certain, might there be pressure to use it for rationing of care or -- who knows -- even sterilization? The penultimate report of the last President's Bioethics Council raised similar issues. If such abuses were to occur, we could find ourselves agreeing with people at many points on the political spectrum that such practices should be prohibited.
Which would not compromise our opposition to consumer eugenics -- or our support of comprehensive healthcare reform.
The image above is from the United States Holocaust Memorial Museum website, where the text is translated as: "This hereditarily ill person will cost our national community 60,000 Reichmarks over the course of his lifetime. Citizen, this is your money."
Edwin Black’s award-winning book on the history and modern implications of the American Eugenics Movement is about to hit the silver screen. War Against the Weak the movie had its World Premiere over the weekend at the Santa Barbara International Film Festival. The book offers a chilling and remarkably accessible look at the American eugenics movement by examining its origins and the cultural, political, and institutional practices that fostered its popularity in the early to mid 20th century. The filmmakers offer the following synopsis:
In the first three decades of the 20th Century, American corporate philanthropy, combined with the efforts of the scientific, academic and political elite, created the pseudoscience eugenics, and institutionalized race politics as national policy. The goal was to create a superior, white, Nordic race and obliterate virtually everyone else.
Under the Nazis, American eugenic principles were applied without restraint, careening out of control into the Reich's infamous genocide. American eugenicists openly supported Germany's program, with both financial and intellectual capital. Once WWII began, Nazi eugenics turned from mass sterilization and euthanasia to genocidal murder. War Against the Weak explores this complex relationship between American eugenics and the horrors of the Holocaust.
While this documentary exploration of the history of eugenics is incredibly important and should make a profound contribution in educating the public, one can only hope that the filmmakers do not minimize one of the strongest points made by Black in his book: that many of the concerns raised by past attempts to breed better humans may be presenting themselves today through developments in reproductive and genetic technologies. Too often we lose this context.
North Carolina has set up a toll-free number (800-662-7030) for survivors of the state's eugenic program, which ran from 1929 to 1974. More than 7,600 people were sterilized under the law, which was finally repealed in 2003. Presumably most of them are no longer alive, but state legislators are trying to decide how to compensate the surviving victims.
Kudos are due once again to the Winston-Salem Journal, for its prize-winning 2002 series "Against Their Will," which played a pivotal role in bringing this history to modern attention, and for continuing to follow the story.
These efforts are important, even if to date North Carolina is the only jurisdiction to offer anything more than words of regret. Shouldn't other states follow their lead? Is it time for national consideration of the issue? There are regular reports of people proposing to revive eugenic sterilization. And technically, the Supreme Court ruling in Buck v. Bell, which confirmed the legality of state sterilization, still stands. (Skinner v. Oklahoma raised questions about the use of sterilization as punishment but did not overturn the Buck decision.) Should we find a way of over-riding it?
Better Babies contestants at the Indiana State Fair, 1929
The leading newspaper in Canada's capitol city published an essay by ethicist Margaret Somerville on the social implications of widespread genetic screening. In "A New Eugenics," she asserts that the clear message is that certain groups of people don't make the genetic grade, and should not have been born:
As harsh as the language is, we must ask ourselves: "Are we on a search-and-destroy mission to wipe out certain groups of people?"...
[A]re we implementing a new eugenics and, if so, what are its dangers? To respond we need to take heed of history....
Whether or not we like it, the message we will be delivering at the societal level is: "We don't want you in our society unless you measure up to a certain genetic standard. You are only a potential member, until you've passed the admission test that we are willing to pay for with our tax dollars and implement."
The unavoidable collective impact of these decisions is the implementation of negative eugenics with respect to disabled people and it's disingenuous to deny that.
Negative eugenic practices have historically taken various forms, from infanticide, on to prenatal testing and selective abortion, and then to preimplantation genetic diagnosis (PGD) in the last two decades. With the price of genetic sequencing plummeting, the next step becomes apparent. The technology behind the wide genetic scans offered by companies such as 23andMe could feasibly be used on an entire batch of blastocysts in a fertility treatment, enabling prospective parents and clinicians to pick the genetically "best." Such a process was just described by the assisted reproduction and stem cell company Reprogenetics, at a recent meeting of the American Society for Reproductive Medicine.
What might be the cost of a wide-scanning PGD? Traditional PGD presently costs a few thousand dollars over the price of basic in vitro fertilization, and has been used to select against a single gene at a time, generally one related to a serious disease that is known to be carried by one or both of the parents. As a baseline for some "back of the envelope" calculations, the service of 23andMe, which tests for 91 genetic variations, currently costs $400. At this price, applying it to an entire cohort of a dozen blastocysts, even with additional costs for extracting a single cell from each and amplifying their DNA, may become competitive.
If the additional cost of such a procedure were just a few thousand dollars, then prospective parents who already are using IVF may find it hard to resist. But could this become even more widespread? I would not rule out the future use of wide genetic scans for natural pregnancies. This would sometimes be followed by selective abortion, just as it now sometimes is for sex selection. In fact, there's a good chance genetic testing could be done using a pregnant woman's blood at just five or six weeks gestation, as is currently done with prenatal sex determination and possibly soon for monogenetic diseases such as cystic fibrosis.
But wide adoption may hinge on the cost-benefit analyses of insurance providers. In jurisdictions where a new baby is likely to have the same insurer for much of its life, such as nations with single payer health care, some may argue that the cost of a wide genetic scan plus IVF would warrant coverage in order to ensure a "genetically healthy" baby, even if there is no indication of genetically-related disease in the parents.
Of course, IVF remains a physically unpleasant process, and many parents would decline the service, even if free. At what point, though, might they face pressure from their insurer, government, or society at large to be sure their child will be the healthiest possible?
Carrie Buck, who was sterilized after a 1927 ruling of the U.S. Supreme Court
Compulsory sterilization is in the news yet again, in at least three different places:
A Texas judge has "ordered a woman, as a condition of her probation, to stop having children."
In Vancouver, there has been widespread discussion of whether a pregnant 27-year-old mother whose five children have been taken into care should be sterilized.
A Louisiana State Representative "wants to pay poor people to get sterilized and reward rich people for having children." He claims that "the black community will say this is some sort of race-based genocide" but it's not because "the majority of people on welfare in the nation are white. ... The politically safe thing to do is to not touch this, but the train is potentially going off the cliff and everyone just wants to ignore the problem."
The Times-Picayune has lambasted that last proposal in an extraordinarily strong attack, saying that the Representative in question "is known for bone-headed ideas" and that other lawmakers "have even named a tongue-in-cheek award for the session's dumbest piece of legislation after him." (His seat was once held by Klansman David Duke.) The editorial does call the proposal eugenics, and does remind us of the horrific history in this country, and of the Nazi version.
Similarly, the Vancouver Sun's report does mention the history of Canadian eugenics, and the Wall Street Journal's article on the Texas case does place it in the context of history, emphasizing that after "the horrors of eugenics in Nazi Germany, the sterilization movement dwindled." Nevertheless, the paper opened up a blog on the topic for comments, and the conversation (in that case, largely thoughtful and varied) begins again.
"Genes have had a rocky relationship with justice, dating at least to the early years of the last century, when eugenics laws encouraged forced sterilizations to break the cycle of "inherited criminality." "Shiftlessness, nomadism, pauperism all were assumed to have biological and genetic causes," said Jeffrey R. Botkin, a physician and ethicist at the University of Utah School of Medicine."
Stanford law professor Hank Greely is quoted in the second piece, providing an interesting example of how these developments can impact racial minorities:
"Greely estimates that at least 40 percent of the FBI database is African American, though they make up only 13 percent of the U.S. population. That is because in an average year, more than 40 percent of people convicted of felonies in the United States are African American, he said.
If the national database were used for familial searching, he said, and assuming that on average each person whose profile in the database has five first-degree relatives, authorities would be "putting under surveillance" roughly a third of the African American population, compared with about 7.5 percent of the European American population, he said.
"I don't think anybody's going to be falsely convicted," he said. "It's the time, hassle and indignity of being interviewed by the police. How much is that worth? How much does that cost a person? I don't know, but it's not zero."
In a recent Washington Post commentary, Dartmouth ethicist Ronald Green advocates everything from designer babies to human reproductive cloning. On Tuesday, CGS' Richard Hayes and Marcy Darnovsky will give their take on these matters. Hayes' commentary will be posted in the Outlook section of the Washington Post's website; Darnovsky will discuss the issues with Green on NPR's Talk of the Nation. (11 am Pacific / 2 pm Eastern)
Could a gene be partly responsible for the behaviour of some of the worlds most infamous dictators?
Selfish dictators may owe their behaviour partly to their genes, according to a study that claims to have found a genetic link to ruthlessness. The study might help to explain the money-grabbing tendencies of those with a Machiavellian streak - from national dictators down to 'little Hitlers' found in workplaces the world over.
Reading the article a bit more deeply, one learns that the researchers based their conclusions on a well-known psychological game in which volunteers (in this case students) are given money, as well as the power to distribute it among other people. The researchers looked at a gene that had previously been linked to "pro-social" behaviors, and found a correlation. The students who kept the money for themselves instead of sharing it were more likely to have a shorter version of the gene.
Psychologists and economists have nicknamed this experimental situation the "Dictator Game." Although the researchers who used it in this study reference the name of the game in the title of their article, they phrase their observations in terms of the degree of "altruism" exhibited. But Nature's reporter casts the experiment as revealing a "ruthless dictator gene." In turn, that framing was adopted by various othernews outlets, using attention-grabbing titles like "Some are born despots" and "Dictatorship may lie in ones genes."
This case goes a step beyond the excessive simplification of much reporting of genetic associations, which too often touts the gene for happiness, aversion to foods, or propensity to vote. And it goes beyond typical misleading framings that, once established, dominate news coverage. In this case, a news article in one of the world's most respected scientific journal tells us that a genetic characteristic can lead to the worst of possible human behaviors. To the extent that this framing becomes adopted as truth, how will society react to the identification of the gene in individuals? Or in fetuses? Or during preimplantation genetic diagnosis?
The American religious right's particular advocacy of pro-life, pro-family, and pro-children leads it to oppose real equality. How this plays out for women is often clear: They should forgo a career to raise children while relinquishing control of their bodies. But the stunning cover story in the latest issue of The Nationreveals the racist implications of these positions. Perhaps feeling their domestic influence wane, Christian conservatives are looking abroad, warning that Europe faces the prospect of a "demographic winter" due to declining fertility among native (i.e. white) Europeans and higher rates among immigrants, primarily Muslims from the Middle East and north Africa.
This is not a fringe movement. Groups dedicated to heading off this "end of European civilization [that] can be counted in years" have forged an alliance among evangelical Protestants, Catholics, and particularly Mormons, and have made alliances with the big shots: the Heritage Foundation, the Family Research Council, Concerned Women for America, Focus on the Family, and even former Presidential hopeful Mitt Romney. This coalition taps into not just reactionary religiosity but also fear of terrorism, homophobia, sexism, anti-Semitism, and opposition to immigration, both moderate and explicitly xenophobic.
In case the racial message wasn't clear enough (winter is, of course, the season of darkness), anecdotes such as this one highlight it:
At the national level, in 2004 [conservative] Italian Prime Minister Silvio Berlusconi offered a "baby bonus" of about $1,000 to parents who had a second child.... The racial preferences behind Berlusconi's "baby bonus" came into embarrassing relief when immigrant parents were accidentally sent checks for their offspring and then asked to return the money: the Italian government hadn't meant to promote those births.
Of course, calls for people of certain races to have more children because others are having too many isn't just racist - it is eugenic. That it seeps from the political right should come as no surprise to those who have a basic understanding of twentieth century European history. But it may come as a surprise to those who have bought into the use of anti-eugenic rhetoric from the right wing, which sometimes tries to smear abortion rights with the historical association between early abortion advocates and eugenics movements. Ironically, that rhetorical has been used by some of the very organizations that now back higher fertility among whites to prevent a dark "demographic winter."
Slate’s Will Saletan has backed himself into a corner by
coming to the defense of James Watson – the
eccentric DNA pioneer who found himself pontificating on how Blacks’
separate evolutionary patterns conferred genes to them that depresses their
intellects. Like any liberal-minded person, Saletan disavows white supremacy as
an idea. But when it comes to cold hard data on race and intelligence, he
becomes transfixed; any true effort at egalitarianism, he believes, must engage
with reality rather than ignore it. This is the basis of Saletan’s exhaustive three-part series
that tries to separate the empirical question of race and intelligence (vis
a vis genome sequencing and IQ tests) from the inherent racism that gives
legs to this conversation.
Suffice it to say that Saletan’s foray into the
“hereditarian theory of intelligence” debate has been disastrous. (Those
interested in seeing his argument taken apart piece by piece can click here and here.)
Saletan has been rightly attacked for the racist nature of his commentary, but
less attention has been paid to a similarly troubling aspect of his rant:
After reciting rather weak data correlating certain genes with intelligence and
misusing data from the International HapMap Project to ostensibly
show that West Africans disproportionately lack the so-called “intelligence
gene," Saletan passionately argues:
“Don't tell me those Nigerian
babies aren't cognitively disadvantaged. Don't tell me it isn't genetic. Don't
tell me it's God's will. And in the age of genetic modification, don't tell
me we can't do anything about it.”
Saletan seems to be saying that not only are Blacks genetically
inferior, but that they should be genetically
modified in order to keep their genomes up with the Jones’. This twisted
logic – made under the guise of leveling the genetic playing field – reveals
the very real danger of a 21st century eugenics, where the explicit
bias and state coercion that characterized last century’s eugenics is replaced
by the soft bigotry of fetishizing technology as the remedy for all social
Saletan’s arguments also show how this new eugenics, like
the old, is likely to prey upon disadvantaged minorities – all while claiming
to help them. For example, he notes that “2.2 percent of the project's
Chinese-Japanese population samples, 5 percent of its European-American
samples, and 10 percent of its Nigerian samples lack the [intelligence] gene.”
Yet, he only proposes subjecting Nigerian children to genetic engineering and
not the Whites who, by his own logic, are also “cognitively disadvantaged” in
comparison to Asians.
But that's not all. Though neither media nor blogosphere have noted it so far, Watson - and a small but disturbing number of other prominent figures - have over the past decade been actively promoting a renewed program of eugenics, this time using twenty-first century reproductive and genetic technologies.
Those familiar with the Center for Genetics and Society are aware of these travesties; in fact, CGS's formation in 2001 was prompted in large part by the urgent need to counter them. Thus we've collected a fair sample of revealing Watsonisms. We've compiled these, and ask that anyone who has others send them to us.
Here are a few other accounts of Watson's eugenics advocacy:
Posted by Center for Genetics and Society on October 22nd, 2007
Over the past half century, millions have known James Watson for his Nobel Prize and double-helix fame. Only last week did most learn about James Watson, bigot and eugenics enthusiast.
Watson now says, "That is not what I meant." But take a look at these statements by him, stretching back years. And he's not the only one; some of his colleagues have joined him in advocating for a new high-tech eugenics.
Do you have a Watson quote we've missed? Post it as a comment below, and we'll add it to the list. Please be sure to include citation.
On race and intelligence
“[A]ll our social policies are based on the fact that [Africans'] intelligence is the
same as ours - whereas all the testing says not really… [P]eople who have to
deal with black employees find [equality] is not true.”
is no firm reason to anticipate that the intellectual capacities of peoples
geographically separated in their evolution should prove to have evolved
identically. Our wanting to reserve equal powers of reason as some universal
heritage of humanity will not be enough to make it so."
On "stupid" kids, ugly girls, and enhanced children
you really are stupid, I would call that a disease.... The lower 10 percent who
really have difficulty, even in elementary school, what's the cause of it? A lot
of people would like to say, 'Well, poverty, things like that.' It probably
isn't. So I'd like to get rid of that, to help the lower 10 percent...."
unfair that some people don’t get the same opportunity. Once you have a way in
which you can improve our children, no one can stop it. It would be stupid not
to use it because someone else will. Those parents who enhance their children,
then their children are going to be the ones who dominate the world..."
say it would be terrible if we made all girls pretty. I think it would be
"I think it's irresponsible not to try and direct evolution to produce
a human being who will be an asset to the world."
"My view is that,
despite the risks, we should give serious consideration to germ-line gene
therapy. I only hope that the many biologists who
share my opinion will stand tall in the debates to come and not be intimidated
by the inevitable criticism ... If such work be called eugenics, then I am a
Addressing members of the British
Parliamentary and Scientific Committee, May 2000
Embracing the Master Race
"Here we must not fall into the absurd trap of
being against everything Hitler was for.... Because of Hitler's use of the term
Master Race, we should not feel the need to say that we never want to use
genetics to make humans more capable than they are today."
afraid of asking people what they think. Don't ask Congress to approve it. Just
ask them for the money to help their constituents. That's what they want....
Frankly, they would care much more about having their relatives not sick than
they do about ethics and principles. We can talk principles forever, but what
the public actually wants is not to be sick. And if we help them not be sick,
they'll be on our side....
"If we could make better human beings by knowing
how to add genes, why shouldn't we? What's wrong with it?… Evolution can be just
damn cruel, and to say that we've got a perfect genome and there's some
On the Ethical, Legal, and Social Implications program of the Human Genome Project
wanted a group that would talk and talk and never get anything done," Andrews
quotes Watson as telling a meeting. "And if they did do something, I wanted them
to get it wrong. I wanted as its head Shirley Temple Black."
Three scientists have been awarded a Nobel Prize for their work on gene-targeting and other techniques for producing transgenic mice. Known as “knockout mice,” these genetically engineered animals are widely used by researchers to model and study human diseases. In the words of one of the Nobel committee members, they have “led to penetrating new insights into development, immunology, neurobiology, physiology and metabolism.”
Not mentioned in the award announcement or media coverage of it are new Nobelist Mario Capecchi’s views on the future use of these techniques to produce transgenic human beings – genetically modified people who would pass their engineered traits on to all future generations. In short, Capecchi is on record embracing the idea.
Capecchi’s techno-utopian views seem particularly jarring in light of his biography. As a small child in Italy during World War Two, he lived on the streets and in orphanages for several years after his mother was taken to Dachau as a political prisoner. Yet he appears to endorse the use of the genetic tools he has developed for purposes that are frankly eugenic.
Capecchi was one of several prominent scientists – along with James Watson of double helix fame, ex-Science editor Daniel Koshland, mouse biologist turned futurist Lee Silver, and others – who enthused about this prospect at the notorious 1998 conference Engineering the Human Germline. Held at UCLA and covered on the front pages of the New York Times and Washington Post, the event was described by its organizers as part of an effort to make inheritable genetic modification “acceptable” to the public. “The question is not if, but when and how,” the conference report asserted.
Capecchi’s conference presentation was titled “The Genetic Engineer’s Tool Box.” Its abstract described it as “examin[ing] the techniques used to engineer genetic changes in various organisms and consider[ing] their technical potential for refinement into tools for safe, reliable germline engineering in humans.”
Capecchi acknowledged concerns about the safety and wisdom of making permanent changes in the human genome. If germline engineering were to begin in twenty years, he mused, “the procedures that we'll be working out at that point will appear very primitive fifty years from now. And those procedures, in turn, will appear very primitive a hundred years from now.” This is a serious problem, he said: “So there's no way we should create a system where it is a permanent record.”
But for Capecchi, this problem is surmountable. In fact, he had already devised a clever work-around. His proposal: Create germline genetic changes that can be activated or reversed with a drug cocktail. In his plan, the altered genes inserted into every cell in the future child’s body would be designed to function only until they encounter the drugs that turn them off. Or they would be designed to do nothing until they were turned on. “It's simply not something we are writing in stone and whatever mistakes we make we're going to have to live with from then on,” Capecchi explained. “There are very simple ways to make it reversible.”
In an undated video clip that appears to be more recent, Capecchi expresses what sounds like wariness about human germline engineering. But to my knowledge, he has never reconsidered his fundamental support for it, nor discussed its eugenic implications. And he remains eager to extend the reach of his tinkering. “So far the work we've been doing has been entirely in mice,” he told the Chronicle of Higher Education after learning of his Nobel award. “[W]e are interested in seeing if this knockout technology applies to other mammalian species.”
Like the onslaught of summer movies regurgitating tired plot lines, arguments putting forth the idea that intelligence is a fixed, measurable, and heritable trait are making a comeback. Take Michael Hanlon's commentary piece in last week's New Scientist as an example. After framing his piece by describing racism's immorality as stemming from discrimination based upon one's "genetic inheritance," Hanlon suggests that society ought to reject a similar type of "genetic discrimination that is not only legal [but] universally applied and wholly respectable": discrimination against what he calls "the stupid."
Hanlon's piece reflects a growing trend in using genetic arguments to legitimize discredited biological theories of intelligence. But that dog simply don't hunt. Hanlon is careful to not make causal links between genes and intelligence. Rather, he unpersuasively couches his thoughts through a series of awkward correlational arguments: IQ correlates with intelligence, and since IQ is distributed on a bell curve that correlates with society's "natural distribution," there will always be non-mentally disabled people who have genetically linked low IQs correlating with their mental shortcomings that, in the end, limit their professional success. Hanlon then bifurcates this so-called reality into two main populations - the intelligent and the stupid - to make policy recommendations, including special vocational training for "the dim end of the normal range."
Hanlon gets it wrong in more ways than can be sensibly discussed in a blog post; those interested in a fuller discussion should check out Gould's The Mismeasure of Man and Fischer et. al.'s Inequality By Design. Nature certainly limits and blesses individuals in strange and unknown ways. But to imply that intelligence is a single, measurable-by-correlation entity that can be predicted at an early age and used to assess one's lot in life simply ignores the many different types of human intelligence that exist, regardless of the ones any particular society chooses to reward at any particular time. Hanlon rightly suggests that schools should expose students to more career options. But, it's just not clear to me that genes or IQ tests have much to do with this.
New York Times op-ed columnist David Brooks has been known for brandishing a form of journalism turned pop-sociology that seems appealing at first glance but upon closer investigation is, shall we say, less than accurate. Sadly, his writing on human genetic engineering might take this trend to a new low.
With usual flair and wit, Brooks' recent op-ed column artfully describes the troubling implications stemming from today's reproductive and genetic technologies. Increasingly, fertility clinics are encouraging people to use selection technologies for no other reason than to design children that look and behave like "society's best" - a market-driven corollary to the eugenics movement, one of the darkest moments in human history. And Brooks eloquently captures this concern:
Those of us in the low-center-of-gravity community will be left on evolution's cutting-room floor. People under 5-foot-9 can't even donate sperm to these banks, so my co-equals are doomed, let alone future Napoleons. . . . In a world in which Brad Pitt is average, say farewell to loneliness, sublimation and nerds' witty bids for attention. In a world in which everyone is smart, good-looking and pleasant, everyone will be fit to perform in hit movies, but no one will be fit to review them.
As poignant as this might be, what's simply mindblowing is that after laying out how a new market-driven eugenics may very well be right around the corner, Brooks throws his hands up in the air and writes, "I'm not under the illusion that any of this can be stopped." Sure it can, David. Many countries around the world - including Canada and the United Kingdom - have enacted regulations to curb these technologies' troublesome applications and promote their sound medical use while protecting individual rights. Though the United States is currently human biotech's Wild Wild West, it need not be.
A small brouhaha has been building over Bay Area radio station KMEL's online baby contest, whereby listeners can submit their babies' pictures and vote for their favorites. Apparently, not everyone was happy with the online voting and cut-off procedures that suggested that some kids weren't quite as cute as their parents thought.
Today's baby competitions are an odd continuation of the "better baby contests" made popular by the early 20th century American eugenics movement. Back then, infants and toddlers went through extensive examinations at county fairs and other public gatherings to determine which child exhibited the "best" characteristics. These competitions were tied closely to prevailing eugenic ideas of race betterment; contests were designed to give a pop culture spin on promoting hygiene, strength, and vigor among American families to improve their so-called breed.
What's interesting, as the KMEL firestorm shows, is how these same ideals remain latent in American society. We continue to judge babies and award prizes under the assumption that children can be placed on some hierarchy of attractiveness that speaks to their worth, if not also their family's. And, all of this centers around unarticulated yet celebrated norms of health and able-bodiness that reaffirms these characteristics as natural, normal, and good. These contests, like those in the past, generate a notion that good babies look a certain way and conform to specific social standards.
While today's baby contests aren't embedded in the eugenic ideology of the "fitter family" competitions, it's important to look at the interaction between popular culture and scientific practices that might lead to questionable outcomes. In today's case, it might suggest that the desire among some to use reproductive and genetic technologies to have designer babies that look a certain way doesn't come out of nowhere.
Check out this 80th anniversary remembrance of the infamous "Three generations of imbeciles is enough" ruling by Oliver Wendell Holmes in Buck v. Bell, which upheld Virginia's involuntary sterilization laws.
"[L]et's not foolishly believe that victims of eugenics are an artifact of history. So long as we speak in terms of good genes and bad genes, recognize a life with a disability as an injury, and allow health policies to value some lives over others, we continue to create human rights violations every day."
We here at Biopolitical Times have a number of concerns about human biotechnologies and their possible misuse. At the top of the list is how these technologies might lead to a new eugenics, in which an old pseudoscience of trying to improve the human race through breeding out undesirables takes a new high-tech form.
However, judging from CNN's recent episode of "Paula Zahn Now," eugenics isn't the only pseudoscience threatening to make a comeback.
Zahn's May 16th episode featured an in-depth investigation of why Asian Americans' academic achievement is disproportionately better than other races. In the midst of a troubling conversation about Asians' genetic endowments, CNN's Senior Medical Correspondent Dr. Sanjay Gupta took things to a whole new level:
"Some scientific evidence suggests that, yes, Asians might just be smarter by nature genetically, higher scores on I.Q. tests, larger cranium sizes, faster reaction time."
Larger cranium sizes? Craniometry is the completely discredited 19th and early 20th century scientific theory that group intelligence is predictable by measuring skulls. Blatant racism was an inherent to the theory; skull measurements conveniently placed Whites at the top of the ladder while darker skinned peoples occupied the bottom rungs.
Is Dr. Gupta trying to reshuffle the craniometry deck with Asians on top, suggesting that there might after all be some connection between race, skull size, and aptitude? Is he serious? Is this part of a growing trend for pop culture's doctors to tie social outcomes to long discredited scientific theories? Only three words are needed to respond: Mismeasure of Man - the definitive work by the late Stephen Jay Gould on how this whole line of reasoning is as absurd as it is harmful.
The state of Indiana has apologized for its role in the eugenics movement. It's not the first state to do so, but this is particularly significant because Indiana was the first government in the world to endorse eugenic sterilization. A historical marker at the statehouse, unveiled in a ceremony yesterday, reads:
By late 1800s, Indiana authorities believed criminality, mental problems, and pauperism were hereditary. Various laws were enacted based on this belief. In 1907, Governor J. Frank Hanly approved first state eugenics law making sterilization mandatory for certain individuals in state custody. Sterilizations halted 1909 by Governor Thomas R. Marshall. Indiana Supreme Court ruled 1907 law unconstitutional 1921, citing denial of due process under Fourteenth Amendment. 1927 law reinstated sterilization, adding court appeals. Approximately 2,500 total in state custody were sterilized. Governor Otis R. Bowen approved repeal of all sterilization laws 1974; by 1977, related restrictive marriage laws repealed.
As a native of Indiana, where I spent my first twenty years, the story was already close to home. But when I saw the photo of Jamie Coleman (above), a woman present at the marker commemoration who'd been sterilized in 1971, it moved even closer. She is three years younger than my mother. The law wasn't repealed until the year I was born. Given that eugenic sterilization was often conducted sloppily, particularly upon the poor, and given as well the characteristics of my family, it's not out of the question that my family could have been affected.
Of course, the eugenics story is not over. Suggestions for apologies by other states for their programs have been controversial. More importantly, eugenics continues. Peter Marcus, an OB-GYN professor at the Indiana University School of Medicine, said, "Eugenics is still around, it just takes a different way.... Whether you give that right to the parent or the state, some people will ask the question of whether that right should be given at all. That's where modern eugenics is."
A number of social, economic, and technological trajectories support Marcus's disturbing assertion. Health and behavioral problems are increasingly viewed as having genetic sources, while social problems are seen as needing technical solutions. The dominant "swim or sink" framework of the neoliberal market society encourages parents to view their children through a lens of competition, and to give their children any possible edge. A wide array of prenatal and preconception genetic tests give these parents the tools to do so, with vast new possibilities of genetic enhancement lurking around the corner. Meanwhile, the gutting of social welfare systems offers a dark future for those children whose parents may have resisted the social pressures to have only the "best" children. Finally, the most disenfranchised and vulnerable groups segments of society are now "offered" the "option" of turning their body over to authorities for a "better chance," whether it' s sterilization for crack addicts [PDF] or using prison inmates as research subjects and organ donors.
William Schneider, a history professor and coordinator of a symposium on eugenics in Indiana, said, "The point is, eugenics was not just a product of the bad old days. People had the best intentions, or at least they thought they were the best intentions, and they had the best science, or at least they thought it was the best science, but they got it wrong."
Let's hope we have the collective wisdom to get it right this time. We need this wisdom because we have the "best" technology, not in spite of it.
300 is arguably the most racially charged movie since D.W. Griffith's The Birth of a Nation. In true post 9/11 form, Brown becomes the new Black; the Battle of Thermopylae is dramatically recreated to depict Persians as bloodthirsty barbarians temporarily thwarted by a small contingent of chiseled White freedom fighters looking to preserve democracy at all costs. And, like Griffith's early 20th century cinematic screed, this mixture of race, racism, and violence has proven remarkably profitable: 300 grossed over $70 million in its opening weekend and remains atop at the box office.Karl Rove couldn't have done a better job putting together what some are calling a pro-West propaganda flick; its opening a few days before the Iraq War's four year anniversary is beyond ironic. But while race and racism are certainly dominant themes, another troubling aspect has gone largely unnoticed: its unrestrained glorification of eugenics.
Within the first few minutes, moviegoers are introduced to Spartan eugenics whereby every newborn is inspected; those showing defect or disability are abandoned to die. Initially shocking to the audience, they are quickly reassured that this is all for the greater good: nation, freedom, and democracy. 300's crafty narration and erotic imagery easily legitimates these practices. After all, Spartans are brave, noble, and beautiful. And did I mention they have great abs?
This pro-eugenics trope is only magnified by the film's dramatic climax which implausibly suggests that were not the Spartans betrayed by Ephialtes - a disabled Spartan whose parents hid from the authorities - the 300 eugenically engineered soldiers would have outlasted Xerxes' minions. Put differently, the taste left in viewers' mouths is that but for the failure of Spartan eugenics to catch Ephialtes at birth, King Leonidas may very well have led the outmanned and overmatched army to victory.
On the heels of the IOM's suggestion to relax restrictions on using prisoners in clinical trials, South Carolina is looking to push the envelope a bit further: incentivizing prisoners to "donate" organs by skimming 180 days off their sentence. No, this isn't Beijing. We're talking about Charleston which, despite General Lee's efforts, is still subject to federal law that forbids any "valuable consideration" to be given in exchange for organs. This hasn't dismayed a bipartisan state Senate panel, which hopes to find a loophole to permit the proposed program. What's going on here? First the federal government wants to use prisoners to test drugs, now states want to harvest prisoners for their organs. What's next? 200 days shaved from women's prison sentences for donating eggs for stem cell research? This shift from prisons as rehabilitative institutions to profitable biomedical repositories is more than troubling.
Posted by Osagie K. Obasogie on December 15th, 2006
Between Iran’s Holocaust-questioning conference, the New York Timesarticle on disabled parents designing babies with disabilities matching their own, and Armand Marie Leroi’s controversial article on eliminating fetuses with undesirable traits, eugenics seems to be the soup de jour on many people’s menus these days.
The prestigious Journal of the American Medical Association (JAMA) is also serving this particular dish, albeit with a side order of subtlety. This week’s issue features an article encouraging the use of preimplantation genetic diagnosis (PGD) for screening out embryos genetically inclined towards developing cancer. After noting that a growing number of cancers have been associated with more than 30 gene mutations, the authors conclude
men and women at hereditary risk for cancer can take advantage of the potential of assisted reproduction, including PGD, to decrease the psychological burdens imposed by these diseases, by threat or occurrence, from one generation to the next.
PGD was initially developed to allow parents to avoid having children with early-onset diseases that are genetically determined, almost certain to occur, and dramatically diminish life expectancy. Tay-Sachs is a prime example. But this JAMA article highlights how new arguments are being put forth to expand the use of screening technologies to exclude embryos with genetic predispositions for often treatable adult-onset diseases that are not simply hereditary or sure to happen, but are complicated by environmental influences and lifestyle choices.
While understated, this article reflects an extraordinary shift in how we think about reproductive technologies’ appropriate use as well as their social impact. And rather than being an isolated incidence of biomedical overreaching, there are other prominent examples of how this approach is taking hold in the medical community.
Lowering the PGD bar seems to be, as Slate’s Will Saletan puts it, a “gentle descent towards eugenics” where medicine’s role becomes controlling the types of people born rather than helping individuals manage the medical risks we all have at some level. Even more troublesome, it’s only a small yet slippery slide down the slope to future understandings of “risk” that conflate social and medical determinants; after all, people with genes for blond hair and blue eyes seem to lead “healthier” and “better” lives. Not exactly Hippocrates’ vision of modern medicine.
Posted by Osagie K. Obasogie on November 8th, 2006
Yesterday's New York Times had a fascinating article on Lebensborn, a Nazi eugenics program designed to breed children with desirable traits(blond hair, blue eyes, etc.) in order to create a superior Aryan race. While the entire article is eye opening, this passage is remarkably chilling:
"Ms. Heidenreich, the first of the Lebensborn children to write a book about her experience, argues that the program, sinister as it was, has echoes in today's world. With advances in genetics, she notes, discriminating parents will soon be able to select traits in their unborn children. Given that possibility, she said, the evils of the Nazi era must not be allowed to recede into the history books. "If we start engineering blond-haired, blue-eyed babies, can we blame just Hitler?" she said."