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Hotline for Eugenics Victims

Posted by Pete Shanks on December 10th, 2008

Eugenics logo

North Carolina has set up a toll-free number (800-662-7030) for survivors of the state's eugenic program, which ran from 1929 to 1974. More than 7,600 people were sterilized under the law, which was finally repealed in 2003. Presumably most of them are no longer alive, but state legislators are trying to decide how to compensate the surviving victims.

Kudos are due once again to the Winston-Salem Journal, for its prize-winning 2002 series "Against Their Will," which played a pivotal role in bringing this history to modern attention, and for continuing to follow the story.

Over the last several years, there have also been apologies from Virginia, Indiana (on the occasion of the 100th anniversary of the first state sterilization law), Oregon, California and South Carolina. (A resolution was introduced in Georgia, but it seems to have stalled.) There have also been conferences in Sacramento and Indianapolis, focusing on their respective local histories, and in Washington, D.C., looking to avoid a eugenic future.

These efforts are important, even if to date North Carolina is the only jurisdiction to offer anything more than words of regret. Shouldn't other states follow their lead? Is it time for national consideration of the issue? There are regular reports of people proposing to revive eugenic sterilization. And technically, the Supreme Court ruling in Buck v. Bell, which confirmed the legality of state sterilization, still stands. (Skinner v. Oklahoma raised questions about the use of sterilization as punishment but did not overturn the Buck decision.) Should we find a way of over-riding it?

Previously on Biopolitical Times:

DNA Databases: Another Human Rights Violation in the U.S. Criminal Justice System?

Posted by Osagie K. Obasogie on December 9th, 2008

One of the more dubious aspects of the United States criminal justice system is the long list of practices that others in the Western World consider to be blatant human rights violations. This includes the death penalty, the so-called “prison industrial complex,” and the disproportionate policing, prosecution, and imprisonment of racial minorities. But a ruling last week out of the European Court of Human Rights suggests that the US can now add another one to the list: the collection and retention of DNA profiles from arrestees never convicted of a crime.

While the expansion of DNA databases in the United States has been well documented, the latest trend has been the permanent retention of DNA samples from those arrested but never convicted. Proponents of this move argue that expanding the collection of DNA samples to arrestees will improve law enforcement; opponents point out that these materials are highly sensitive and implicate family members other than the individual arrestee. This privacy concern is what largely persuaded the European Court of Human Rights to rule against the UK policy of retaining arrestees’ samples.

The case was brought by two men: a then 12 year old accused of armed robbery and a 45 year old charged with harassing his partner. Neither was ever convicted, yet their DNA remained in the UK database after several requests to remove them. The Court did not mince words in describing the human rights impact of this practice:

the blanket and indiscriminate nature of the powers of retention of the fingerprints, cellular samples and DNA profiles of persons suspected but not convicted of offences, as applied in the case of the present applicants, fails to strike a fair balance between the competing public and private interests and that the respondent State has overstepped any acceptable margin of appreciation in this regard. Accordingly, the retention at issue constitutes a disproportionate interference with the applicants' right to respect for private life and cannot be regarded as necessary in a democratic society. 

Women's health group launches campaign on risks of drug used in egg retrieval

Posted by Marcy Darnovsky on December 8th, 2008

An article in the December newsletter of the National Women's Health Network sounds an alarm about significant problems caused by the drug Lupron. Despite thousands of reports to the FDA of serious adverse reactions, Lupron is still being prescribed both for FDA-approved uses - prostate cancer in men and endometriosis and fibroids in women - and for "off-label" uses - shutting down the ovaries of women whose eggs are being retrieved either for their own or someone else's fertility treatment.

The article by Susan K. Flinn includes the stories of women who have contacted NWHN asking it to investigate the drug. Their stories are similar, Flinn reports: These women were healthy before using Lupron, but after using it they had serious symptoms that persisted for months or years. And despite thousands of adverse reactions reported to the FDA, neither the agency nor Lupron's manufacturer have indicated any interest in investigating the drug.

The NWHN is calling for

a concerted effort of women, physicians, health officials, researchers and media. The people who are considering taking Lupron are the ones who have the right to know that they are risking a lifetime of symptoms that may cost them their jobs, spouses, savings and quality of life.
Toward those ends, NWHN is initiating an educational and policy campaign "to get the word out about the misuse and dangers of Lupron® and other drugs," and together with Our Bodies Ourselves, the Center for Medical Consumers, and the Endometriosis Association, is about to launch The Informed Rx Decision-Making Consortium.

CIRM won't give up on eggs for cloning-based work

Posted by Jesse Reynolds on December 3rd, 2008

In the first draft of its revised strategic plan [PDF], the California stem cell research agency indicates that it will continue its recent push for women's eggs for cloning-based stem cell research, perhaps paying if necessary:

The second level of activity [concerning materials procurement policies of the California Institute for Regenerative Medicine (CIRM)] involves re-evaluation of existing policy regarding the procurement of oocytes for research. Some observers have suggested that Medical and Ethical Standards regulations have constrained efforts to develop stem cell lines through somatic cell nuclear transfer (SCNT). To discuss this important issue further, CIRM will convene a meeting with a range of participants, including those directly affected by oocyte donation and those with special interests in this process.

President Alan Trounson and board chair Robert Klein have led the charge, going public with their efforts at a meeting of the research standards advisory group in February and one of the full board in June. There, they proposed work-arounds of the prohibition on paying for eggs, one of the few ethical standards explicit in Proposition 71, which was authored by Klein to create the CIRM.

The work of Hwang Woo-Suk, however scandalous it was, did indicate that the supply of eggs may not be the problem. He burned through over 2200 eggs, some of them acquired in illegal and coercive ways. Yet Hwang, a skilled yet ethically-challenged researcher, was not able to produce clonal embryos, much less stem cell lines. And even if eggs were the limiting factor, do we wish to lower our agreed-upon ethical standards any time they impede research?

In any case, cloning-based stem cell research is a very speculative, largely unsuccessful path, and one whose goals are rapidly being achieved by an alternative method, cellular reprogramming, or iPS.

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