The "Outing" of Sperm Donor 9623
Posted by Hasmik Djoulakian on July 1st, 2016
Sperm banks continue to expand their search and selection criteria to include clinically ambiguous and frankly irrelevant donor information (favorite pets, astrological sign, hobbies). Yet their failures to verify the self-reported personal and medical histories of donors have recently prompted a set of legal complaints aimed at combating fertility clinic negligence in the unregulated assisted reproduction industry in the U.S.
Several families, including Angela Collins and Beth Hanson from Canada, have recently brought a lawsuit against one Georgia-based clinic, Xytex, and one particular donor. The legal questions are themselves significant, but the case also raises important considerations around disability, class, and genetic determinism.
Xytex, along with its distributor in Ontario, informed Collins and Hanson that Sperm Donor 9623 had an IQ of 160 and was pursuing a PhD in neuroscience, and had no history of physical or mental illness apart from his fatherís colorblindness. The clinic did not verify this information, but relied on what Sperm Donor 9623 had reported. The parents, now raising their young son, were understandably shocked upon learning that his donor had in fact spent time in jail and received multiple diagnoses of mental illness.
Parentsí anger, and their concern about their familiesí future, should of course be recognized and respected. But so should the complicated set of issues that this case raises. How do we assess it while resisting genetic determinism, challenging biological explanations for class-based inequalities, and critiquing a purely medical understanding of disability? How do we negotiate the differences between human variation and costly, painful, mental illness? How should we come to terms, legally, politically, and emotionally, with the responsibility Ė or negligence Ė of commercial players in the realm of human reproduction? None of the answers are obvious.
The couples who used Sperm Donor 9623 may never have realized that he had been diagnosed with schizophrenia and other mental illnesses if Xytex had not accidentally and negligently revealed his identity in an email exchange. Three of the many families who used his sperm are now seeking to set up a fund for their childrenís preventative health care and future medical costs. In addition to its part in a legal strategy, the argument for this fund brings into focus the various roadblocks that people with mental illness face accessing employment, education, and mental health services.
In most articles discussing the case, the "perfect" sperm donor that families thought they were selecting (high IQ, graduate degree, etc.) is rhetorically pit against the donorís "actual" identity: a "mentally ill convicted felon" (1, 2, and 3). Press releases, news coverage, and lawsuits indulge in assumptions about genetic determinism and overstate the chance that the children will take on the behavioral characteristics of their sperm donor. Though such reductive sound bites are common in media representations, they do not emerge in a vacuum and their harm extends beyond this one case. The assumptions that permeate media and legal discourse about Sperm Donor 9623 hinge in part on widespread misunderstandings of disability, poverty, and genetics. Much of the language swirling around this case creates false dichotomies between health, intelligence, and success versus illness, criminality, and failure. We all live in far greater nuance than that, whether or not we currently live with a disability, including schizophrenia.
Aside from focusing on his schizophrenia, many articles also mention the sperm donorís felony charge, implicitly suggesting there is a link between genes and criminality (and mental illness and criminality). This is an incorrect and politically troubling connection. But it is not without its supporters. For more than a decade, Kent Kiehl, a psychologist and neuroscientist who also studies schizophrenia, has been visiting high-security prisons in the U.S., scanning the brains of more than 4,000 inmates with a mobile MRI unit, and building a database to look for genetic links to violence. Kiehl claims that psychopaths and violent people "have different brains," which are "at least 50 percent caused by genetics" and supports research aimed at studying the MAO-A gene (which has been problematically nicknamed the "warrior gene"). A more recent study on MAO-A chose as its sample the brains of 328 male children. These studies and others like them assume a lot at the outset, including that incarcerated people (and males) are inherently more violent than others, and that this is genetically pre-determined.
Many news articles about Sperm Donor 9623 also mention that he had dropped out of college, implying there are "genetic links to educational attainment." While some researchers recently touted a study that identified 74 genetic variants that influence how many years of school people finish, a closer look reveals an important caveat: those 74 genes "explain slightly less than one-half of 1 percent of the differences between peopleís education levels." Given the other aspects of Sperm Donor 9623ís identity, thereís a missing discussion in the press about whether he had the necessary mental health or financial support to finish his education.
The links between genes and the likelihood of developing schizophrenia are difficult to quantify or clinically predict. Many gene clusters have been identified that may contribute to the diagnosis, and it is also believed that environmental conditions can trigger schizophrenia. The complicated state of the field has been muddled in media coverage of this lawsuit, as in one CNN article claiming that certain gene clusters cause schizophrenia 70% to 100% of the time. Critics point out that research findings are often overhyped, despite the currently enormous gap between the huge amounts of genetic information that are generated and the relatively miniscule amounts of clinically reliable advice based on it.
Being predestined at birth for dropping out of school and committing crimes is logic that sounds familiar to historians. In the U.S. alone, tens of thousands of people have been sterilized and excluded from "respectable" society through state and institutional eugenics programs because they were considered predisposed to criminality, "feeble-mindedness," and all-around substandard genetic material. Fear of disability Ė physical or cognitive "deviance" from what those with power have historically decided is "normal" Ė is wrapped up in mistrust of people who are poor or have criminal records. At the core, this anxiety continuously answers its own question: Who should be allowed to reproduce?
Nothing about this case is objective, self-evident, or easily teased apart, but the history of eugenics informs the pressures faced by families in this high-tech fertility moment. People now encounter an expanded range of options, expectations, and ways of thinking about families and reproduction. Parents understandably want the best for their children. It would be difficult, if not impossible, to not feel frightened at the prospect of a child developing schizophrenia, especially when everything around us says our functioning needs to be "normal" and when social supports are so lacking. And many would recoil in fear from a gamete donor who had dropped out of college or had prior convictions, without stopping to consider the eugenic assumptions embedded in that reaction.
The ableist and classist underpinnings behind the drive for particular kinds of gamete donors sit on a landscape defined by expectations and mechanisms of consumer-based, free market products and purchases. If assisted reproduction becomes a transaction, it can become difficult to resist treating the resulting children as commodities. The parents in the Xytex lawsuit clearly donít believe their children are "incorrect" or "undesirable," but it is difficult to procure damages for breaching informed consent and covering potential future medical costs without arguing that the sperm donor was absolutely "incorrect" and "undesirable."
Previously on Biopolitical Times:
Image via Flickr/Grace Hebert
Updates: The California Legislature and the Market in Human Eggs
Posted by Marcy Darnovsky on June 30th, 2016
A fertility industry-sponsored bill that would expand the market in human eggs is barreling through the California legislature, in spite of opposition from womenís health, reproductive justice, and public interest organizations. AB 2531 would overturn a California law that lets researchers reimburse women for their expenses incurred in providing eggs, but disallows payments beyond that. The 2006 statute that AB 2531 would eviscerate was authored by former state Senator Deborah Ortiz, known for championing both womenís health and stem cell research, and approved almost unanimously by both the Assembly and Senate.
In an April blog post, Will California Expand the Market for Womenís Eggs?, we summarized the reasons for opposing AB 2531 (see also this CGS letter) and reported that it had been unanimously approved by the Assembly Health Committee. In early June, the Senate Health Committee posted its analysis of the bill, including a summary of the arguments for and against it, and a list of its supporters and opponents.
The Committee passed the bill by a vote of 8-1 at a June 15 hearing. Testimony by CGSís Elliot Hosman against it can be viewed here (starting at 52:35), or read at the end of this post.
The bill will go next to the Senate Appropriations Committee when the legislature returns from recess in early August, and then to a vote by the full Senate. Assuming it passes, it will then be sent to Governor Brown. The Governor vetoed an almost identical bill in 2013 with the following message:
Not everything in life is for sale nor should it be.
This bill would legalize the payment of money in exchange for a woman submitting to invasive procedures to stimulate, extract and harvest her eggs for scientific research.
The questions raised here are not simple; they touch matters that are both personal and philosophical.
In medical procedures of this kind, genuinely informed consent is difficult because the long-term risks are not adequately known. Putting thousands of dollars on the table only compounds the problem.
Six years ago the Legislature, by near unanimity, enacted the prohibition that this bill now seeks to reverse. After careful review of the materials which both supporters and opponents submitted, I do not find sufficient reason to change course.
I am returning this bill without my signature.
David Jensen of the California Stem Cell Report covered AB 2531 for the Capitol Weekly (Senate eyes human egg business), and Diane Tober discussed it at Undark (The Politics of Womenís Eggs). The notoriously under-studied risks of egg harvesting were also featured in a recent Washington Post article, Do women who donate their eggs run a health risk?
As those of us who support the existing limits on the egg market in California have pointed out repeatedly, without adequate health and safety information about egg harvesting, women can't give truly informed consent to undergo it in exchange for cash. And despite the claim of AB 2531 proponents, egg providers are very different from research subjects: Unlike clinical studies in which researchers follow the health outcomes of participants, egg retrieval supplies researchers with biological materials for other experiments, but without any study of its effects on those who provide them.
Elliot Hosman's testimony explains these and related points.
Testimony in opposition to AB 2531 by Elliot Hosman, June 15, 2016
Good morning, and thank you. I am Elliot Hosman, Senior Program Associate at the Center for Genetics and Society, a public interest organization based in Berkeley. We have long been concerned with the lack of adequate research on the health risks of egg retrieval. Our concerns are broadly shared by many others, including national and California womenís health and reproductive justice organizations you see opposing this bill, and including scholars and health professionals, and women who have themselves undergone egg retrieval.
The research that could identify the extent and frequency of health risks associated with egg retrieval has simply not been done. Itís been called upon to be done for decades, but it has not been done. Thus the information women would need to give informed consent does not currently exist. Unfortunately, this bill increases payments without providing mechanisms to bring about the conditions for substantive informed consent that women deserve.
The intent to treat egg providers as "human research subjects" may sound like a good idea, but in fact egg providers are not "research subjects" as we usually understand that term. They provide the cells that are used in research, not for their benefit, but no research is performed to ascertain the effects of egg retrieval on their own health outcomes.
While some Institutional Review Boards may review egg retrieval procedures, they are not required to do so. For example, if the eggs are anonymized, many reviewers may deem they are no longer required to evaluate retrieval protocols or informed consent forms, and eggs are often anonymized, so this is often case.
Even when IRBs do review, they typically do not provide adequate safeguards:
We all support promising research that might provide broad benefits, and we all want to make sure that womenís health is not compromised in the process.
- They donít require tracking short term outcomes, so we donít have good data on how many egg providers are injured or hospitalized due to ovarian hyperstimulation syndrome from the drugs theyíre on.
- They donít require tracking long term outcomes so we have almost no data on the stimulation drug regimenís impacts on their fertility, their short-term or long-term cancer risks, or other problems they may face.
- They seldom require follow up health care for egg providers. At best they cover treatment of short term injuries that can be directly and causally linked, but donít cover any longer term harms.
- They donít review the treatment outcomes of clinics or researchers to determine if any are using inappropriate protocols that harm egg providers.
Unfortunately, this bill does not accomplish that, and we respectfully urge you to vote against it.
Previously on Biopolitical Times:
The Disappointing NAS Gene Drive Report
Posted by Pete Shanks on June 30th, 2016
On June 8, the National Academies of Sciences,
Engineering, and Medicine issued a report about
gene drives, titled:
Gene Drives on the
Horizon: Advancing Science, Navigating Uncertainty, and Aligning
Research with Public Values
The headline of the associated press release summed it up succinctly:
Gene-Drive Modified Organisms
Are Not Ready to Be Released Into Environment; New Report Calls for More Research and Robust Assessment
Francis Collins, director of the National Institutes of Health, commended the authors for a "thoughtful and comprehensive review of the unprecedented potential and challenge of gene drive technologies." Thatís true enough. It is a valuable
resource for a much-needed public debate ó but it is sadly incomplete, and occasionally misleading.
The reportís skepticism about "reversal drives" is welcome (see Recommendation 5-5, p. 99) but inadequate. If gene drive technology goes wrong, is the solution really to be more gene drive? Indeed, Kevin Esvelt, one of the pioneers of (and an advocate for) gene drive told The New York Times that
the report failed to adequately flag its central risk.
"They assume you can safely run a contained field
trial," he said. "But anytime you release an organism with a gene drive system into the wild you must assume there is a significant chance that it will spread ó globally ó and factor that in."
The report makes repeatedly admits that field research is most likely to occur in "low- and middle-income countries" (p. 6 etc), recognizes "that many countries lack the capacity to develop a comprehensive regulatory scheme for gene drives from scratch" (p. 8), and the like. These should be warning flags. If technology really can help underdeveloped nations, the impetus should come from them. And the U.S. is not a party to the multilateral Convention
on Biological Diversity (CBD) and its protocols, which aims to promote fair and equitable sharing of benefits arising from genetic resources. U.S. institutions are developing technology that, if applied, will mostly be used elsewhere. Centuries of exploitation do not suggest that
wealthy foreigners are the best judges of humanitarian needs.
(Or perhaps we should invite Cuban doctors to set up clinics in Appalachia?)
The report also appears to downplay the possibility of "weaponizing" gene drive technology. The worst case ó a deliberately belligerent release of modified pathogens ó would surely rank with nuclear destruction as a prospect to be avoided; and mere mistakes could be as bad. There is a reason the ETC Group titled its comment [pdf] on the report:
Stop the Gene Bomb!
Jim Thomas of the ETC Group wrote an excellent article about the report for the Guardian, calling for the CBD to agree on an international moratorium on release of gene drives. Friends of the Earth asked sardonically, "Permanently changing a species: What could go wrong?" and called for a moratorium. Ron Bailey of Reason initially wrote an apparently knee-jerk response ("Go slow and let more people suffer and die") which misunderstood Esveltís position; he then appended
a much more interesting Correction acknowledging that "How to regulate an open access commons is always a perplexing problem." Michael Specter in The New Yorker called the National Academiesí effort "a worthy, if somewhat tepid, report," and Stanfordís Hank Greely agreed, in a valuable blog post that made "Eight Quick Points."
Finally, the report sometimes reads as though its goal
was not so much "aligning research with public values" as "aligning public values with research." Itís striking that the "stakeholders" mentioned do not appear to include any of the civil-society groups widely
known to have raised concerns about this issue. "Stakeholders" are described (Figure 7-1, p. 122) as "people with direct professional or personal interests in gene drives." May I raise my hand? I work with
the Center for Genetics and Society; other public
interest organizations that have been involved with gene drive deliberations include ETC Group, Friends of the Earth, and International Center for Technology Assessment.
Unfortunately, the initial flurry of reactions seems to have died down. Gene drive could be a major disruptive technology. It could affect not only our environment ó the "out there" ó but our food and even our selves. This report deserves to provoke a massive, global debate. A long pause for reflection is the least that is needed. Or T. S. Eliot may have finally been proved correct:
This is the way the world ends
Not with a bang but a whimper.
Previously on Biopolitical Times:
On the 14-Day Rule and Other Limits
Posted by Pete Shanks on June 29th, 2016
What is the speed limit where you live? In
California, it varies but the maximum is 112.654 kph. In France, the speed limit can run as high as 80.778 mph (actually a couple of yards more).
You donít see those numbers on road signs, because the
California vernacular uses the mile, which is officially defined as 1,609.344 meters, while France uses the kilometer. A meter, of course, is the length of the path travelled by light in vacuum during a time interval of 1/(299,792,458) of a second. Itís obvious when you think about it.
In both jurisdictions, the concept of a speed limit is the same, and the idea is generally justified by public safety, and perhaps fuel conservation, neighborhood nuisances and so on. Itís a common-sense restriction that gives all drivers guidance, and that is meant especially for those lacking in common sense.
The limit is not defined by the maximum speed of a vehicle.
Biology also has its widely accepted rules, which are sometimes given the force of law and sometimes mostly a matter of custom and ethics. Many of these were agreed at a time when there was no immediate prospect of successfully breaking them: a firm line, legally codified in dozens of countries, against human germline intervention, for instance, or the internationally accepted norm of a 14-day limit on human embryo experiments.
They give researchers a clear guideline within to work, and they give the public confidence that rogue scientists will not go overboard.
Until very recently, no one had come close to growing a human embryo in a dish for 14 days. In May, however, two different groups of scientists (1, 2) published experiments demonstrating that they could indeed do that. Simultaneously, three scholars ó all experts in bioethics theory and/or practice ó published a piece in Nature titled:
Embryology policy: Revisit the
They were just raising the question, they insisted
in response to the obvious retort: Why revisit if you donít want to change the rule? "Revisit need not mean revise," tweeted one author. Some other bioethicists, including Jonathan Moreno, agree that:
Whatís really more important
than whether itís permissible to move those goalposts is how we make that decision.
That sounds incredibly reasonable. But why now? Just because the rule has suddenly become inconvenient? If that is the case, does it suggest that some bioethicists see their mission as working to legitimate whatever research desires scientists may have? That is, to convince the public of what they ought to think is good for them?
And if the pragmatic and useful 14-day agreement is broken, what then? Hank Greely spelled out a basic complaint:
"I donít know where you stop. I do know that I would feel very concerned about a 20-week fetus being used as an experimental object, because itís too damn close to being a baby," he said. "And people should not be treated as objects."
Greely expanded on this in his own blog post. FranÁoise Baylis wrote a nuanced analysis. By coincidence, the International Society for Stem Cell Research (ISSCR) issued its latest guidelines for
stem-cell research [pdf] a few days later: they stick firmly to the 14-day rule.
There will undoubtedly continue to be pressure to change the norms that have guided research in many related fields over the next few years. Human-animal chimeras are up for discussion, so of course are human germline interventions, and gene drives in other species. Many knowledgeable people, including scientific participants, regard the prospects as extremely scary.
Admittedly, in some cases, adjusting existing rules may seem sensible; the 55 mph speed limit was widely ignored and eventually repealed. But that change had nothing to do with the technical abilities of car manufacturers.
The top speed of a production car has been over 110 mph since 1947, and over 150 mph since 1959. Itís now over 250 mph, and Iíd like to see that Bugatti trying to weave its way up the Pacific Coast
Highway. Probably couldnít get out of second gear.
Previously on Biopolitical Times: