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Breaking from our Eugenic Past

Posted by Jessica Cussins on November 13th, 2014


In an historic recognition of the horrors of the United States’ state-sponsored eugenics programs during the twentieth century, North Carolina has now begun sending compensation payments to some of its 7,000 sterilization victims. Unfortunately, as NPR has covered, the new policy will lose some people through bureaucratic cracks.


Nonetheless, the importance of this moment for those who have been fighting for recognition of this abuse of reproductive justice and human rights cannot be overstated. It has been a long struggle to get to this point.

Twentieth-century eugenics in the US is often systematically ignored. This year, some important efforts have shed light on how it was that many of the most respected members of society promoted these (profoundly discriminatory) practices. New York University’s new exhibit, Haunted Files: The Eugenics Record Office, which will run until March, is an important one.

The recognition of this history is timely because advances in genetic and reproductive technologies will put increasingly more people in the position of having to wrestle with questions about the kind of child they want – and don’t want – to bring into the world. For example, the start-up company GenePeeks brings us what enthusiasts call “virtual eugenics” by encouraging “best matches” of gametes.

Forbes ran an article over the weekend called “Could Genomics Revive The Eugenics Movement?” Its short answer was, yes, and given our history, we should be really concerned.

Of course, some people would rather ignore these connections. In a twist of particularly cruel irony, Jon Entine published a piece in The Huffington Post called “Let's (Cautiously) Celebrate the `New Eugenics’” on the exact same day that the eugenic victims of North Carolina were finally beginning to be compensated for their loss.

Entine’s argument is along the lines that individual choices absolve us of eugenic implications. But one only need look at the 163 million missing girls in Asia or the over 90% termination rate following a prenatal diagnosis of Down syndrome, to see that this is naïve. Choices about families can never be strictly individual; we are all subject to social and political realities.

Now is not the time to celebrate eugenics (cautiously or otherwise), but to finally learn about the toll that our pseudoscientific eugenic laws had on people’s lives and on society, so that we are not endlessly condemned to repetition.

Previously on Biopolitical Times:





Human Germline Modification in the UK? Cries of Caution from all Corners

Posted by Jessica Cussins on November 13th, 2014


Untitled Document

The UK House of Commons Science and Technology Committee held an evidence hearing on October 22 to discuss the science of what they euphemistically call “mitochondrial donation.”

The Committee has now published all of the evidence it received for that hearing. Out of twenty submissions, just five explicitly argue in favor of changing the current UK law prohibiting human inheritable genetic modification in order to allow three-person IVF. These arguments largely consist of emotional pleas from families that currently have a child suffering from mitochondrial disease, and that want to utilize the technology in an attempt to have an unaffected and genetically related child.

The other fifteen submissions warn that we are nowhere near being able to promise these families a healthy child. Three make the case that more evidence is needed prior to offering these techniques in fertility clinics. Twelve argue that the risks to women and children are so great that we need to rethink this entire route as a means to prevent inter-generational transmission of disease.

None of these detailed letters were mentioned at the hearing. When I wrote a blog about it a couple weeks ago, I used the provocative title, “What Good is a Scientific Meeting If You Dismiss the Science?” Now that I’ve seen all the evidence the Committee received, I’m wondering if “Dismiss” should be replaced with “Systematically Ignore.” In fact, one scientist who submitted an eleven-page correspondence on concerns about “the safety of the procedures and the health of the children created through them,” notes

The entire public debate and consultation process surrounding mitochondrial replacement has been based on disastrously flawed scientific assumptions.

He’s not wrong.

Although this latest bundle of correspondence is unlikely to get much media attention, the advent of yet more well-documented public criticism could leave its mark.  Leading stem cell scientist Paul Knoepfler wrote an open letter to UK Parliament warning that allowing human trials of three-person IVF at this time would be an “historic mistake.” And the editors at the New Scientist recently changed their tune to assert that these techniques are “more messy than [they] thought” because “children conceived in this way will inherit vital traits from three parents.”

What will be determined at the upcoming Parliamentary vote is still anyone’s guess.

Previously on Biopolitical Times:





FIXED: The Science/Fiction of Human Enhancement

Posted by Jonathan Chernoguz on November 12th, 2014


Untitled Document

FIXED: The Science/Fiction of Human Enhancement, the documentary produced and directed by Regan Brashear, has recently shifted to the center of a variety of discussions and symposia on normalcy and disability. 

The University of Rochester is hosting its first-ever Disability Studies Cluster Symposium this Friday, November 14, which has been crafted and organized around the film.  The symposium is titled “Complicating Normalcy: Disability, Technology, and Society in the Twenty-First Century.” 

The film will also be screened on opening night at the Other Film Festival, the largest disability film festival in Australia, on December 3.  Additionally, the United Nations has just licensed the film for its work on the Convention for Rights of People with Disabilities.

FIXED questions commonly held beliefs about disability and normalcy by exploring technologies that promise to change our bodies and mind forever. The film follows five people with disabilities and explores the implications new human enhancing technologies have on them. 

Clark Miller, Associate Director of the Consortium for Science, Policy and Outcomes at ASU, raved about its interdisciplinary importance for students and faculty,

This film is extremely important and will be very valuable for faculty from dozens of different disciplines from the biological sciences to disability studies to the humanities and social sciences, precisely because it confronts one of the central issues of our time: how to make sense of variations among human beings and how to make sense of our capacity for radical technological innovation that will change our entire futures.

Brashear has been in touch with CGS since the beginning of production, and the documentary features CGS Executive Director Marcy Darnovsky sharing her concern about the potential misuses of new and emerging human biotechnologies. 

FIXED was screened at Future Past: Disability, Eugenics, and Brave New Worlds in 2013, a public symposium that CGS co-organized with the Paul K. Longmore Institute on Disability, Facing History and Ourselves, and Living Archives on Eugenics in Western Canada. This symposium focused on the historical and ongoing implications of eugenic ideologies and practices for people with disabilities, and FIXED synthesized many topics of the day, while providing new food for thought. 

Also in 2013, CGS hosted a Talking Biopolitics conversation with Regan Brashear, in which she discussed the reception of the film.

FIXED is a great film for promoting discussion about the profound implications of new technologies on the lives of people with – and without – disabilities. It's wonderful to see it getting so much well-deserved attention. To learn more about the film, watch the trailer, or buy a copy, see more here.

Previously on Biopolitical Times:





Patently Absurd? Or Absurdly Patentable?

Posted by Pete Shanks on November 12th, 2014


WARF logo

The US Supreme Court might agree to rule on the validity of stem-cell patents, and the Canadian courts are being asked to invalidate a patent on disease-linked genes. These suits may not succeed, but they do indicate that the legal issues around patenting human genes and tissues have not yet been resolved.

David Jensen of the California Stem Cell Report has a run-down on the stem-cell patent held by the Wisconsin Alumni Research Foundation, better known as WARF. The case has been brewing since 2006, and an appeals court ruled in favor of WARF earlier this year. Technically, the latest appeal is about standing to sue — Consumer Watchdog is the plaintiff, working with Jeanne Loring of Scripps and the Public Patent Foundation. However, the underlying question, as Michael Hiltzik pointed out in the Los Angeles Times, is: Can scientists patent life? The Supreme Court may refuse to take the case; if it does, it may make a very narrow ruling. Or, of course, not.

Meanwhile, in Canada, an Ottawa hospital is challenging patents that cover a genetic test for a heart condition. The patents involved are held by the University of Utah, Genzyme Genetics and Yale University. The Children's Hospital of Eastern Ontario (CHEO) in Ottawa reckons they can do the test for less than half the $4500 price, and besides:

"Our position is very straightforward," Alex Munter, the hospital's CEO, told a news conference. "No one should be able to patent human DNA, it would be like patenting air or water."

If the Canadian suit succeeds, it will contradict the position recently taken by the Australian Supreme Court and extend the influence of the U.S. Supreme Court's decision in the Myriad case.

Previously on Biopolitical Times:







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