California Set to Prohibit Sterilization of Prisoners
Posted by Jonathan Chernoguz on July 24th, 2014
Last month, the California Senate unanimously approved bill 1135, which bans the sterilization of inmates as a form of birth control. The bill will soon be put before the Assembly and could become state law this year. If it passes and is signed by the Governor, the sterilization of prison inmates will be permitted only in cases of life threatening emergencies or when medically necessary.
Evidence of unauthorized sterilizations in California prisons emerged through the persistent efforts of Justice Now and an extensive investigation by Corey Johnson of the Center for Investigative Reporting. State Senator Hannah-Beth Jackson, vice-chair of the California Legislative Women’s Caucus, spearheaded the request for a state audit and authored SB 1135.
According to the California State Auditor, more than 39 out of the 144 bilateral tubal ligations performed on inmates from fiscal years 2005-06 to 2012-13 were done without lawful consent. Even more alarming, there is no evidence that the inmates’ physician signed the required consent form for 27 of the sterilization procedures.
The audit additionally says that “the true number of cases in which Corrections or the Receiver’s Office did not ensure that consent was lawfully obtained prior to sterilization may be higher.” In other words, there could be even more victims of sterilizations who are unaccounted for because they are still unaware that the procedure was performed.
With the SB 1135 approved unanimously and on its way to the Assembly, it’s easy to forget about California's murky history with sterilizations. During the twentieth century, dozens of U.S. states had laws permitting explicitly eugenic sterilization. Some 20,000 procedures were performed between 1909 and 1963 in California, the highest number in any state.
This history was raised in the legislature in 2003. Governor Gray Davis issued an apology, and a state resolution was passed that
urges 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.
Yet the resolution presents no outline for making this idealistic “urging” a reality.
When I learned of the continuing sterilizations in California, it seemed to me that the 2003 apology and resolution were empty. As an effort to truly help prevent “any similar abhorrent pseudoscientific movement to arise,” I worked on a petition to incorporate the history of the eugenics movement into California schools’ curricula. The approval of Senate Bill 1135 would also help challenge the re-emergence of eugenic ideologies, as well as prevent abuses in California’s prisons.
Previously on Biopolitical Times:
French Luminaries’ Open Letter on Surrogacy
Posted by Marcy Darnovsky on July 24th, 2014
Sixty French personalities, including prominent politicians of the left and center-left, senior scholars and mainstream feminists, have signed an open letter urging President François Hollande to affirm his opposition to surrogacy contracts and to reinforce the country’s legal prohibition against them. The letter, published on July 14 in Libération and posted as a petition on Avaaz.org, was a response to last month’s European Court of Human Rights (ECHR) ruling that France must grant children born abroad via contract pregnancy arrangements official recognition of their parentage.
The European Court ruled in late June on cases brought by two French families whose children were conceived with their fathers’ sperm and third-party eggs, and carried and delivered by surrogates in California and in Minnesota. The children have been living with the parents in France, but without legal recognition of their parental status.
Signers of the petition include the former President of the European Commission Jacques Delors, former Socialist Prime Minister Lionel Jospin, former Minister of Women's Rights Yvette Roudy, and former head of the French Communist Party Marie-George Buffet.
The letter reminds President Hollande of his commitment against surrogacy contracts, known in French as GPA (gestation pour autrui), and asks him to "fight against the soliciting of French clients by surrogacy agencies.” It characterizes surrogacy contracts as “contrary to the principle of respect for the person, both the woman who carries the child [and] the child who is commissioned.” And it highlights the difficult situation created for France by the ECHR ruling, which in effect offers affluent French citizens a way around their own country’s laws. If the ECHR decision is accepted, the letter says, there will “effectively be a market in babies” in France, though only some will be able to afford it:
Mr. President, how will you explain to French women and French men
that if they have money, they can go buy a baby abroad and register him
or her as their son or daughter with French civil status, while if they
are not wealthy enough, they will be subject to the ban that would
remain applicable to surrogacy contracts made in France?
The letter does recognize that the legal status of children born as a result surrogacy arrangements abroad should be addressed:
It is conceivable to find technical solutions to improve the legal
situation of children living on French soil without succumbing to what
is a triumph of the child-making industry, and without costing them the
status of human being by recognizing the surrogacy contracts that
designated the child as a thing.
The letter has been covered by French newspapers across the political spectrum (Libération, Le Monde, Le Figaro, Valeurs Actuelles) but has apparently not reported in English language publications; an unofficial translation is here.
Making Sense of the BRAIN
Posted by Jessica Cussins on July 24th, 2014
More than a decade after the historic completion of the Human Genome Project, the ethical, legal and social issues (ELSI) are far from being sorted out. The role of genetic information in the courtroom, in research projects, in for-profit companies, at all stages of pregnancies, and in insurance companies is being negotiated across multiple planes on a daily basis. With so many competing interests, reaching consensus on responsible usage can feel like a pipe dream. Nonetheless, important strides have been made in several of these areas through recommendations, regulations, and tireless advocacy.
Are there lessons to be learned from these struggles that might help ease the growing pains of the upcoming projects to understand the brain?
The brain projects are certainly shaping up to be no less momentous or controversial. According to the 1.2 billion pound, ten-year undertaking in Europe known as the Human Brain Project,
Understanding the human brain is one of the greatest challenges facing 21st century science. If we can rise to the challenge, we can gain profound insights into what makes us human, develop new treatments for brain disease and build revolutionary new computing technologies.
The BRAIN Initiative in the United States (called the cousin of Europe’s Human Brain Project) is no less ambitious. It is set to receive $4.5 billion in federal funding over the next 12 years.
These projects will help make sense of what is probably the least understood part of the human body. The origins of our thoughts, memories, desires, actions, and emotions could become less elusive and provide important keys for helping people deal with neurological disorders.
But already at this early stage, extensive criticisms have been voiced. Most strikingly, the conceptual starting place of even being able to successfully map the brain in an intelligible way has been questioned. New York University research psychologist Gary Marcus recently pointed out in a New York Times op-ed that we don’t even know what a good theory of the brain would look like because “[b]iology isn’t elegant the way physics appears to be.” He continued,
We know that there must be some lawful relation between assemblies of neurons and the elements of thought, but we are currently at a loss to describe those laws... The problem with both of the big brain projects is that too few of the hundreds of millions of dollars being spent are devoted to spanning this conceptual chasm.
Additionally, the methodology and reach of the projects have been criticized. There are now over 700 signatories to an open letter to the European Commission from the European neuroscience community. The letter states that the signing parties will boycott the Human Brain Project unless it is amended to be more open, inclusive and flexible.
There are also huge ethical concerns that need to be addressed more comprehensively in both projects. Nature called them “a laundry list of ethical issues,” including “the responsible use of cognitive-enhancement devices, the protection of personal neural data, the prediction of untreatable neurodegenerative diseases and the assessment of criminal responsibility through brain scanning.”
Another risk worth noting is how the influx of resources and excitement for a single element of human biology can overshadow other important factors and encourage biological determinism, even when such a focus is inappropriate or even harmful. Chipping away at the genetic determinism caused by the HGP has been a challenge. In these brain projects, we have an opportunity to learn from such experiences and not start completely from scratch. Otherwise, in five years time, the “gene of the week” phenomenon could simply become the “neuron of the week.”
Other relevant lessons to remember include appropriate boundaries surrounding patents on the human body, the failures of privacy protection, harm of misinformation in unregulated direct-to-consumer models, the problem with trying to modify things we don’t yet understand, and discrimination against certain kinds of bodies. We really don’t need any more examples of how the “science of the day” can be used to justify harming or devaluing certain groups of people.
Opening up our brains for examination is going to stir up not only these issues, but also completely novel ones. We need to learn from past mistakes and be ready to deal with new issues as they arise. For now, it is heartening to see the amount of discussion taking place around the world about these complexities. Hopefully those at the forefront will not merely be defensive about their “grand vision,” but also realize that incorporating both scientific and social complexity in at the early stages is the best route forward for everyone.
Previously on Biopolitical Times:
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Failures and Risks in Biosafety Regulation
Posted by Pete Shanks on July 24th, 2014
The Centers for Disease Control and Prevention (CDC) suffered real embarrassment the other week, and we are all very fortunate that the consequences were not worse. Dozens of employees "were potentially exposed
to deadly anthrax spores" (though no one got sick) and
a lethal strain of flu virus accidentally contaminated
a much milder sample that was distributed to a Department of Agriculture lab.
Meanwhile, six 60-year-old vials of smallpox virus
were found in an old refrigerator at NIH, two of which contained live specimens.
As Laurie Garrett eloquently put it: Oops. Her must-read piece in Foreign Policy was titled:
It’s 10 o'Clock — Do You Know Where Your Bubonic Plague Is?
Spilled smallpox, missing SARS, and rogue scientists with mutant H1N1. If you’re not scared, you should be.
The "missing SARS" refers to an incident in France last year; not CDC, but certainly fitting the pattern. The agency’s head, Thomas R. Frieden, was appropriately “stunned and appalled” by the recent incidents (especially since no one had even told him immediately about the flu error). We can assume that, even if heads don’t roll, procedures will be tightened and many presumably sensible changes will be made. As The New York Times noted solemnly in an editorial:
A small careless error in these experiments could be devastating.
These revelations provide the context for an unusual proposal of caution and public consultation made by a number of very prominent scientists last week. A group of researchers has proposed that policymakers and the public carefully consider the consequences before the introduction of a new practice known as "gene drives," which could lead to "addressing ecological problems by altering entire populations of wild organisms."
The way this might happen is by making very specific changes (using Crispr technology) to the genome of a sexually reproducing organism. These will create truly “selfish” genes — their frequency in a population will increase, even though they are less likely to reproduce. The engineered genes “drive” themselves through the population, possibly even driving the population to extinction. This sounds strange, but it was proposed in theory by Austin Burt in 2003, and technology is now catching up.
There is a peer-reviewed article in eLife by Kevin Esvelt, Andrea Smidler, Flaminia Catteruccia & George Church that gives a 39-page overview of the rapidly developing science. It is accompanied in Science Express by a three-page "discussion of risk governance and regulation intended specifically for policymakers.” The principal contributors to that are Kenneth Oye and Kevin Esvelt, who are joined by eight others (including all the eLife co-authors). Useful summaries can be found in the Boston Globe, MIT Technology Review, Science Insider and MIT News.
They are of course quite right. These potentially huge environmental interventions deserve broad and careful consideration. And we do not have an adequate regulatory structure, nor a robust political or cultural tradition, nationally or internationally, to handle the novel questions involved.
The first application of this kind of approach seems likely to be on mosquitoes. But that is already well under way, albeit with older technology, making this more than a little misleading:
A Call to Fight Malaria One Mosquito at a Time by Altering DNA
That’s the headline The New York Times gave Carl Zimmer’s story. But in fact Oxitec, a British company that is not mentioned in either of last week’s scientific papers, has been working on modifying mosquitoes for years; The New Yorker had a feature on them in 2012. Oxitec focuses on dengue fever, which the US scientists mentioned, but perhaps that's less dramatic for whipping up public support than malaria. (Genewatch UK has much more on Oxitec and GM insects here.)
What the emphasis on mosquitoes does indirectly show is the scarcity of obviously appealing goals for using such an intrusive and potentially overwhelming technology. Sure, everyone can get behind eliminating malaria and dengue fever. And some people might like to rid the Great Lakes of invasive carp. No one likes rats, which as an invasive species are said to cause $19 billion in damage every year. And there is talk about reversing the evolution of plants that have become resistant to herbicides.
All this suggests is that gene drives are part of a potentially very powerful technology whose application is as yet not entirely clear. The scientists involved deserve to be commended for raising the issue of appropriate regulation, and we should note that one of the safety proposals is a plan to reverse such interventions should there develop a problem. But the principal lesson of the recent CDC failures is surely that human error will always find a way through.
Besides, haven’t they heard of kudzu?
Previously on Biopolitical Times:
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