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Fond Farewells and Warm Welcomes at the Center for Genetics and Society

Posted by Marcy Darnovsky on June 18th, 2015

Untitled Document

Changes are in the works here at the Center for Genetics and Society, both on our staff and our Advisory Board.

On the staff side, Jessica Cussins will be leaving her position at CGS at the end of the month, and starting a Master’s program in public policy this fall at the Harvard Kennedy School. Jessica started at CGS in 2012 as a summer staff associate, and quickly grew to be a key and deeply valued member of our team. As readers of Biopolitical Times know well, she is an insightful analyst and compelling writer about all things biopolitical. We’ve also benefited greatly from her research and policy analysis skills (is there anyone who knows more than Jessica about the unfortunate push for approval of “three-person IVF” in the UK?). We’ll greatly miss Jessica’s day-to-day presence in the office, but are very glad that she plans to stay connected, doing some writing and researching for CGS in a consulting role. And we’re thrilled about the exciting new adventures that await her.

CGS’s Advisory Board plays a vital and much appreciated role in our organizational strategizing, development and culture. We recently welcomed a wonderful new member, Alexandra Minna Stern. Alex is a historian of science and medicine and Professor in the Departments of Obstetrics and GynecologyAmerican Culture, and History at the University of Michigan. Her research and public scholarship has focused on the history of eugenics and the uses and misuses of genetics in the United States and Latin America. She is the author most recently, of Telling Genes: The Story of Genetic Counseling in America (Johns Hopkins University Press, 2012), and the award-wining Eugenic Nation: Faults and Frontiers of Better Breeding in Modern America (University of California Press, 2005). A new edition of Eugenic Nation will be published in December 2015; the publisher describes it as “radically new and relevant,” connecting  “the eugenic past to the genomic present with attention to the ethical and social implications of emerging genetic technologies.”

Another recent change on the CGS Advisory Board is in the bittersweet vein: David Winickoff has stepped down from the board and taken a leave from his position as Associate Professor in Bioethics and Society at UC Berkeley, in order to accept a temporary post as Senior Policy Analyst at the Organization for Economic Cooperation and Development in Paris, where he will lead the new Working Party on Biotechnology, Nanotechnology and Converging Technologies. We deeply appreciate his many contributions to CGS’s work, and look forward to staying in touch as he embarks on a new professional chapter. 

Back in the office, we’re fortunate to be joined this summer by two terrific staff associates, Jonathan Chernogouz and Natalie Oveyssi. Jonathan is with us full time until he begins his junior year at UC Berkeley majoring in political economy and minoring in public policy.  He has been working at CGS part time since he was a sophomore, and has been interested in the history of eugenics since learning about the movement in high school. Natalie, who will be working part time, graduated summa cum laude from UC Berkeley in spring 2015 with a B.A. in Sociology.  She served for two years as editor-in-chief of UC Berkeley's undergraduate humanities and social science research journal, and was awarded highest honors for her thesis on women's empowerment and the early twentieth-century American eugenics movement.

We expect to have more news to share shortly about new staff. Stay tuned!

The Science and Ethics of Genetically Engineered Human DNA

Posted by Pete Shanks on June 18th, 2015

Subcommittee hearing 16 June, 2015

Discussion of germline genetic modification continues, most recently in the House of Representatives Research and Technology Subcommittee, Committee on Science, Space, and Technology. The Subcommittee's June 16 hearing gives this post its title. Video is available, as are pdfs of the four witness statements.

Victor J. Dzau, President of the Institute of Medicine (soon to be the National Academy of Medicine) outlined the plans for the Academies Initiative. There will be two parts to this:

  • a global summit to examine recent scientific developments in human gene editing and the range of associated ethical and governance issues
  • a concurrent expert committee to conduct a comprehensive study on human gene-editing research

The exact date of the global summit, which will be held in "late fall," has not yet been announced, and the study, which may take a year, does not yet have a final "statement of task." The day before the hearing the advisory group for the initiative was announced. The 14 members include six of the 18 signatories of the March paper in Science that called for a moratorium (including David Baltimore, Paul Berg and Jennifer Doudna; notable omissions include George Church and Hank Greely) but none of the 5 authors of the stronger Nature paper. All but two members are American, the exceptions being Robin Lovell-Badge (UK) and Xu Zhihong (China).

The other witnesses at the Subcommittee hearing were Doudna, who gave a brief overview [pdf] of gene editing and its possible applications; Elizabeth McNally, who notably included [pdf] the perspective of families who might want to apply such technologies; and Jeffrey Kahn, whose presentation [pdf] included a useful overview of US regulatory mechanisms but seemed to overlook previous international agreements that might serve as models.

The meeting was well attended and the subcommittee members seemed engaged in the topic, if somewhat unclear how best to proceed.

Away from Capitol Hill, there have been some other noteworthy developments:

  • Eric Lander wrote a thoughtful perspective in the New England Journal of Medicine, concluding that (except possibly for a few severe monogenic diseases) for the foreseeable future germline editing should be banned.
  • Margaret Somerville in the Toronto Globe and Mail raised questions of eugenics and a society of the "gene rich" and "gene poor," and expressed strong disagreement with Steven Pinker.
  • The Lancet editorially endorsed the Academies initiatives.
  • CIRM, the California Stem Cell agency, will hold a "public workshop" on November 3 in the Los Angeles area, to see if these "red hot" developments might require a change in their policies.
  • CGS and others have cautiously welcomed the Note on Genome Editing from the White House Office of Science and Technology Policy, but critics from the National Review and the Center for Bioethics and Culture  complained that it was "the usual yadda, yadda, yadda" and would actually open the door to germline interventions.

Meanwhile, research continues. CRISPR has been used experimentally on the hepatitis B virus, and also applied to zebrafish. Agriculturalists are actively discussing genome editing in animals, to make them resistant to disease and other threats from climate change.

Nature News published a good overview of "CRISPR, the disruptor." Next Big Future has a useful comparison of the costs and benefits of using CRISPR rather than Zinc Fingers or TALENs. Finally, Reuters published a thought-provoking report, inspired by the (failed) attempt to modify human embryos, titled:

China's big biotech bet starting to pay off

Previously on Biopolitical Times:

UK Seeks Regulatory Advice for “Mitochondrial Replacement,” Fails to Mention Cross-Generational Implications

Posted by Jessica Cussins on June 17th, 2015

Doug Turnbull, Director of the Wellcome Trust Centre for Mitochondrial Research. Photograph: Christopher Thomond for the Guardian

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How does one go about regulating the world’s first cross-generational biological experiment in human germline modification? The regulating body in charge isn’t exactly sure. They’re seeking input via an online survey by July 1, 2015.

The technique in question, called mitochondrial replacement or three-person IVF, would combine genetic material from three different people into a single embryo, causing permanent changes to the human germline, in the hopes of allowing a woman to have a child who resembles her in all but her mitochondrial disorder.

The UK actually has a law against genetically modifying human embryos for reproductive purposes, but a tireless push from a small group of the UK science elite over many years ultimately swayed Members of Parliament in both the House of Commons and the House of Lords to allow a limited exception to be made for only this technique, and for only the prevention of serious mitochondrial disorders.

Arguably, those campaigning for this political shift didn’t always fight fair – safety requirements such as clinical testing on non-human primates were discarded half-way through when experiments failed to work; the phrase “genetic modification” was redefined to diminish the severity of the techniques; the impact of mitochondria on a wide array of traits was repeatedly misrepresented; and evidence of serious safety and efficacy concerns was routinely downplayed, if not outright ignored.

Now, the Human Fertilisation and Embryology Authority (HFEA) faces the daunting task of having to determine a system to regulate these techniques within fertility clinics before the regulations come into force October 29, 2015.They are currently seeking views from experts.

But if you look at either the “lay summary” or the “background document” they have prepared, you would not necessarily understand why anyone cared so much about these technologies in the first place. Nowhere in either of these documents does it actually explain that these technologies result in human germline modification – something people just might care about since it is banned by every country that has ever considered it, as well as the Council of Europe’s Convention on Human Rights and Biomedicine.

Because of this omission, they have a hard time getting to the heart of the matter – how does one regulate a cross-generational biological experiment?

Instead, their online survey seeks input on more discrete questions. For example, they ask how they should license a clinic to undertake the techniques. This feels somewhat disingenuous since in their lay summary they admit that only one research team in the UK is likely to be in a position to offer this at the moment (surely, the Wellcome Trust Centre for Mitochondrial Research at Newcastle University.)

They also ask how each patient should be determined to be at “particular risk” of passing mitochondrial disease to a child – a requirement of the regulations. However, they say that the presence of “a mutation” in a woman’s mitochondrial DNA (mtDNA) is enough to satisfy this requirement. Now, maybe I’m missing something. But I’m pretty sure that a substantial number of women alive today have mtDNA mutations, and in the vast majority of cases these DNA changes do not cause disease. More precise language would reflect the fact that risk is caused much more specifically by a “known disease-causing mutation in one of the 37 mitochondrial genes.” And that typically, problems only occur once a certain mutation threshold has been passed – say, if there are mutations in more than 20% of your mtDNA.

As for follow-up studies, which “many experts have recommended,” the HFEA is deferring to the clinics. They plan to encourage clinics to ask their patients to take part in studies of the clinics’ design, but will not require the patient or resulting child to take part. However, if a clinic becomes aware that a child has been born with any disease or genetic abnormality, the clinic will be required by law to report this as an “adverse incident.” Of course, in utero genetic testing could find many of these issues before the child is born, in which case the public would be unlikely to be made aware. Moreover, the genetic changes made to that child will be passed onto future generations, but there have been no recommendations for how to monitor any long-term, cross-generational issues that may arise.

For more information on the current regulatory process by the HFEA, see here. Fill out the online survey by July 1, and if you’re in the UK, consider attending their public workshop being held June 23. But be warned: they “are not asking you to comment on the wider ethical and scientific issues involved, nor the statutory framework.”

Untitled Document Previously on Biopolitical Times:

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

Posted by Jonathan Chernoguz on June 15th, 2015

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

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

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

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

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

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

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

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

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

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

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

Previously on Biopolitical Times:

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