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The Rights of Donor-Conceived Offspring

Posted by Naomi Cahn, Biopolitical Times guest contributor on April 15th, 2015


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[This blog is cross-posted at Concurring Opinions.]

The April 14 Washington Post prints an interesting article on regulation and the fertility industry. It quotes both  Marcy Darnovsky and me on the lack of oversight of assisted reproductive technology in this country.  Another issue that it addresses is the rights of donor-conceived offspring to learn the identity of their egg and sperm donors. As I’ve written in numerous articles and books, it is a fundamentally important right for all donor-conceived offspring to learn the identity of their donors.

Other academics disagree with this position, believing it important to protect the identity of gamete donors for a variety of reasons.  I disagree, and I think the  law has a critical role to play in ensuring respect for the rights of donor-conceived people.   Parents can make the legal choice never to find out the identity of their donor.  By contrast, donor-conceived offspring have no such legal right in the United States: unless their parents opted into a known donor program, they are unable to learn the identity of their donors.  While their parents’ choices affect them as children, donor-conceived children grow up, and many become curious about their origins. Yet the law’s tight focus on the parent-child relationship excludes legal questions relating to donor-conceived adults.

Donor conception has drawn on traditional adoption practices, including beliefs that a person did not need to know that she was adopted and did not need health or genetic information, but could be brought up as though she were the biological child of her parents.  It is, by contrast, now well accepted in the adoption world that adopted individuals not only have the right to know they are adopted, but also that they may be interested in finding their birth parents. An increasing number of states now allow adopted individuals to obtain their original birth certificates; thirty-one states have set up mutual consent registries, and others have established search and consent and other procedures.

There is no such widespread recognition in the donor-conception arena, notwithstanding the increasing number of donor-conceived family members who are looking for one another.  The Donor Sibling Registry has now matched more than 12,000 people, and the numbers are growing.  (Full disclosure: I am a member of the DSR’s board.)  The DSR is a mutual consent registry that works diligently to maintain the privacy of its members.

Yet the DSR can’t change the law. Instead, we need to do as so many other countries, including England, have done:  End donor anonymity and give donor-conceived offspring the right to learn about their origins.

Naomi Cahn is the Harold H. Greene Professor of Law at The George Washington University Law School. She is the author of numerous law review articles and several books, including The New Kinship (2013), and Test Tube Families: Why the Fertility Market Needs Legal Regulation (2009); she has co-authored Finding Our Families:  A First-of-Its-Kind Book for Donor-Conceived People and Their Families (2013)(with Wendy Kramer) and Marriage Markets: How Inequality is Remaking the American Family (2014)(with Professor June Carbone); and she has co-written casebooks in the fields of family law, trusts, and estates. 





Calling for “More than a Moratorium” on Human Germline Modification

Posted by Jessica Cussins on April 9th, 2015


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Three high-profile scientists’ statements published in quick succession last month called for various kinds of moratoria on research on and/or use of gene-editing techniques that would result in genetically modified humans. The statements were prompted by reports that human sperm, eggs or embryos have already been created using such techniques in China and the US, and that papers are forthcoming.

These calls from within the scientific community are important, and highlight scientists’ desires not to have their discoveries used for means they condemn. But even among this limited group of scientists, there isn’t a clear consensus about what an appropriate solution looks like. The statement in Nature argues that in vitro research should be part of a moratorium because there is unlikely to ever be a justifiable therapeutic application that warrants the associated risks, while the statement in Science calls for extensive in vitro research to explore possible clinical applications straight away.

Jennifer Doudna, lead author of the Science statement and one of the pioneers of the CRISPR/Cas9 system, gave a lecture at UC Berkeley yesterday in which she raved about how popular the technique has become in the past couple years. She expressed her desire to spread the technology even more widely, beginning with a campus workshop this summer to teach students how to use it themselves. It’s not clear, however, if Doudna’s vision for a free and open CRISPR future will pan out given the heated patent fights already stirring up.

In reality, scientists have the most to gain from the development of these technologies (whether for good or for ill), and for this reason alone are probably not the right people to be guiding international policy. Writing in The Guardian, science, technology and society policy scholars Sheila Jasanoff, J. Benjamin Hurlbut, and Krishanu Saha make a strong case that “Human genetic engineering demands more than a moratorium.” They argue that merely waiting until we have more technical knowledge misses the point:

The answer to how we should act does not lie in the technological details of CRISPR. It is our responsibility to decide, as parents and citizens, whether our current genetic preferences should be edited, for all time, into our children and our children’s children… Decisions such as whether or not to edit human genes should not be left to elite and invisible experts[.]

Patricia J. Williams, writing in The Nation, reminds us that so much more is at stake in the question of whether to genetically modify the human species than just the health of an individual resulting child.

As sociologist Nikolas Rose has observed, the very project of medicine seems to have shifted from a metric of health versus disease to one of ever-expanding perfectibility of the species itself… The post-War aversion to eugenics—the understanding that despite great variability from one human to another, no one life is worth more than another—has eroded.

Writing in The Hastings Center’s Bioethics Forum, Gregory E. Kaebnick reminds us of an important limitation of any gene editing technique at the moment:

[I]dentifying the correct genetic changes is the real issue, though, and CRISPR/Cas9 doesn’t even address this problem. In fact, no gene editing tool can solve the second problem, any more than a word processing tool can by itself solve the problem of how to write the next great American novel. To identify the “correct” genetic changes, we need to understand what the targeted gene does, but also how it interacts with other genes, and also how the genome interacts with environments. We’re not there.

And at Ivy Magazine, Jamie Metzl summarizes the dangers of human germline modification, including:

[P]lain hubris….When we tinker with systems we don’t fully understand, it is very likely we’ll make mistakes….A genetics arms race, especially if different societies have different ideas about the desirability of genetic selection and engineering….Start[ing] to see our children as consumer products.

Metzl invites readers to visit his website and read his novel Genesis Code, and notes that “This may be the most important issue of our lifetime, and yet it hasn’t entered into public consciousness."

These articles are welcome, and necessary, contributions to the public debate at a time when some “practical bioethicists” (all of whom have argued in favor of human germline enhancement) can see only “emotive panic” in the call for broad engagement with this consequential decision for the human future.

It is also nice to see stem cell biologist Paul Knoepfler take these transhumanist-leaning Oxford bioethicists to task for their “one-sided verbiage”:

So experimentally de novo creating designer babies with gene edits that the resulting genetically modified people could then pass along to future generations forever with unknown consequences is really not so different than say getting your vision corrected, stepping outside to smoke a cigarette, changing ones friends or allowing new generations to use the Internet?

I don’t think so.

Other scientists continue to be vocal critics, too. Eric Lander, founding director of the Broad Institute of MIT and Harvard, told C. Simone Fishburn of BioCentury that there is no therapeutic application he can think of that would justify gene editing in human germline cells.

Huntington's patients are heterozygous; 50% of the embryos are just fine, so you can use IVF. There's no case for using germline gene editing in Huntington's because we have a simple technology for people with the disease… We need to truly ban this from a moral standpoint.

Amazingly, despite such widespread disapproval for barreling ahead with this level of manipulation of future humans, it seems that commercial ventures have already been established to utilize precision gene editing techniques. OvaXon is a joint venture between OvaScience and Intrexon that promises to develop “new applications to prevent the transmission of inherited diseases by gene-correcting egg precursor cells for applications in human and animal health.”

A sentence from the article in The Guardian is worth repeating: “Knowing science does not teach us how to live well with its power.” The increasing collapse of barriers between scientific endeavor, commercial enterprise, and careerist aspiration mean that we can no longer casually defer to scientists as voices of objectivity. Moving forward, we desperately need to broaden the conversation about the desirable uses of this technology to include students and teachers, public health workers, reproductive and disability and racial justice advocates, concerned members of the public, and more. There is surely as much to learn and consider about the social and policy implications of germline modification proposals as about their technical details.

Previously on Biopolitical Times:





DARPA, Synthetic Biology and Human Germline Engineering

Posted by Pete Shanks on April 9th, 2015


DARPA wants to change the world — again. The Defense Advanced Research Projects Agency, as it is rarely called, mostly focuses on national security and "game-changing military capabilities" but its range goes much wider. The agency boasts of its contributions to our high-tech society, including the Internet, GPS and even graphical interfaces. And now synthetic biology is becoming an important part of its agenda.

At the end of March, the agency released a 40-page report, Breakthrough Technologies for National Security [pdf]. As the press release summarizes, one of DARPA's four current main areas for "strategic investments" is:

Harness Biology as Technology: To leverage recent breakthroughs in neuroscience, immunology, genetics and related fields, DARPA in 2014 created its Biological Technologies Office, which has enabled a new level of momentum for the Agency's portfolio of innovative, bio-based programs. DARPA's work in this area includes programs to accelerate progress in synthetic biology, outpace the spread of infectious diseases and master new neurotechnologies.

The report is basically a PR document. Skeptics such as Ed Hammond point to unaddressed risks of field releases and the engineering of vaccines; bioethicist Jonathan Moreno is concerned that DARPA doesn't seem to take ethical advice seriously.

But there are those who are thrilled by the new vision: transhumanists. A well-reported article in February's H+ (humanity-plus) magazine is triumphantly titled:

Biology is Technology — DARPA is Back in the Game With A Big Vision and It Is H+

The piece summarizes the agency's ambition in this arena:

They're out to revolutionize the practice and products of bio-science and along the way they are re-defining what it will mean to be human.

DARPA is not the only federal agency ramping up biotechnology. The Department of Energy's Joint Genome Institute, which has been deeply involved in genome sequencing for years, is planning, according to GenomeWeb, to move "into functional genomics and synthetic biology."

Government agencies have long been involved in many kinds of high-tech research. International security expert Nafeez Ahmed may perhaps overstate his case, but the connections between the various defense and surveillance industries and Silicon Valley are real. This would be less surprising, and less unsettling, if it were not for the widely shared perception that the high-tech titans are now fundamentally disconnected from morality, as Eric Giannella details in "Morality and the Idea of Progress in Silicon Valley." In defense and high tech, it is fair to say that transparency has rarely been a priority. It is worrying to think that synthetic biology may be heading in the same direction.

We hear that, at the press conference promoting the new DARPA report, some journalists asked about the current controversies over human germline engineering, and were brushed off with a dismissive comment about "pressing on." This does not seem to have been published, so we cannot confirm it, but it's certainly plausible. DARPA Director Arati Prabhakar is quoted (or perhaps paraphrased) in The Atlantic as saying that "the agency constantly considers the political and scientific controversies surrounding biotechnology research, but that it isn't in the interests of DARPA or the nation to hold back because of controversy."

Clearly this recent DARPA focus on cutting-edge biotech is potentially quite disturbing. At best it means that secret, unaccountable biological research is continuing; at worst — if government-funded scientists are pursuing human germline modification behind closed lab doors — that we have a lot more to worry about than we thought.

Previously on Biopolitical Times:





Incurious about Ethics?

Posted by Marcy Darnovsky on April 9th, 2015


An Institute of Medicine committee is in the midst of a 19-month study, undertaken at the FDA’s request, of the “ethical and social policy considerations” of germline-modifying techniques that cobble together gametes or embryos produced with eggs from two women. The committee held its first public meeting on March 31 and April 1, in the wake of statements of concern about human germline gene editing by several groups of prominent scientists.

Presumably because of the Center for Genetics and Society’s longstanding interest in the techniques and their serious implications, I was invited to speak on a panel about human germline modification. The materials I received in preparation for the meeting included questions about the social and ethical implications of modifying genes that are inherited by future generations, and about the historical context of the prohibitions against human germline modification that have been put in place by several international human rights treaties and dozens of countries (though not the US).

Another question was whether it would be “advisable” to draw policy lines between therapeutic and enhancement applications of genetic modification techniques, the implication being that this might be preferable to the current widespread agreement  that encourages gene transfer to treat sick people, but puts off limits changes that would be passed on to children and subsequent generations. Several invited speakers addressed these questions from a cautionary perspective; see, for examples, here and here.

Unfortunately, most of the IOM committee members seemed remarkably incurious about these points. Few follow-up questions were asked about the societal implications of human germline modification, or about the social values and concerns that have prompted more than 40 countries to adopt laws against it. Committee members didn’t inquire, let alone probe, about the effects of violating this prevailing policy agreement, or about the commercial and social dynamics that might come into play if human germline modification were to be introduced into fertility clinics.

There was, however, a framework of value-laden assumptions that seemed to guide many committee members. In this framework, ethical considerations center on relationships between physicians and their patients, and between researchers and their human subjects (in this case, with parents acting as proxies for their future children). Thus the overwhelming majority of committee members’ comments and questions about ethics involved matters of informed consent, acceptable risk, and whether it was permissible for parents to be required or encouraged to permit medical follow-up of any children produced as a result of germline mitochondrial manipulation.

In short, “ethical considerations” were largely equated with “research ethics,” a critically important but ultimately narrow set of guidelines that is indifferent – and sometimes hostile – to broader social concerns. Within this research ethics framework, the plans and prerogatives of scientists are subject to limits only when there is clear evidence that they are likely to directly harm individuals.

Also central to many committee members’ thinking are those parental desires for genetically related children. For some, such desires trump even the fact that trying to fulfill them would put any resulting children at significant risk. From this perspective, the risks to a child born as a result of mitochondrial manipulation should be weighed against the burden of mitochondrial disease. Of course, this logic assumes both that people at risk of passing on mitochondrial disease have no alternatives, and that the desire for a child who is not just healthy but full genetically related is paramount.

In fact, there is a much less risky way for the overwhelming majority of women with mutated mitochondria to have healthy and genetically related children. But this was also curiously under-explored. Some speakers simply ignored the availability of pre-implantation genetic diagnosis (PGD), an embryo-screening technique that can identify “healthy” embryos for almost all affected women. Another speaker, a proponent of moving ahead with mitochondrial manipulations, went into some detail about the successful use of PGD in Europe for preventing the transmission of mitochondrial disease. But his remarks failed to prompt any reconsideration of the need for germline mitochondrial techniques.

One of the final invited speakers, University of Texas bioethicist John Robertson, is known for his theory of “procreative liberty,” which elevates the desire of some parents for a genetically related child to a right that should be constitutionally protected. Although risks to women and offspring can be taken into account, Robertson argued, any other concerns are “airy” and “moralistic.”

The FDA commissioned the IOM study because its own focus is supposed to be safety and efficacy, and because it recognized the salience and critical importance of broader concerns about mitochondrial manipulation techniques after they came up repeatedly at its February 2014 Advisory Committee meeting. Taken as a whole, the day-and-a-half conversation at the recent IOM meeting leaves a lot of room for a more thorough exploration of the “ethical and social policy considerations” of these germline-modifying techniques. The IOM committee plans another three meetings before it develops its report to the FDA. So there’s still time, if there’s interest and willingness.

Previously on Biopolitical Times:





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