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Protecting research subjects from a broken system

Posted by Marcy Darnovsky on April 8th, 2008


Jesse Gelsinger

The current issue of The Hastings Center Report includes five articles about human research protection. One of them, "Eight Years after Jesse's Death, Are Human Research Subjects Any Safer?," asserts that

despite the press exposure and public outcry that followed [Jesse Gelsinger's 1999 death in a gene therapy clinical trial], no progress has been made in fixing the broken system of protections for human research subjects. These people…are still at serious risk of exploitation and harm.

Many things stand in the way of better protection, but perhaps the greatest obstacle is the lack of adequate federal oversight.

The article is especially significant because of its authors' expertise and experience. Adil E. Shamoo is a researcher in the University of Maryland's Department of Biochemistry & Molecular Biology and the founder and editor-in-chief of the journal Accountability in Research. Paul Gelsinger, the father of Jesse, has worked to improve human research protection since his son's death. Both have played lead roles with the human rights organization CIRCARE, Citizens for Responsible Care and Research.

The CIRCARE website includes a collection of documents about Jesse Gelsinger's death and the ensuing revelations about the researchers' egregious conflicts of interest, deliberate omissions in the consent form Jesse and his family signed, and scandalous lack of oversight by the FDA. In a 2001 essay titled "Jesse's Intent," Paul Gelsinger tells the story of his son's death and his own journey from complete trust in the researchers to sharp critic of a badly broken system.

One revealing episode takes place on the Gelsingers' back porch two months after Jesse's death. Paul Gelsinger asks head researcher Dr. James Wilson, who has come to Arizona with the results of Jesse's autopsy, whether he has any financial interests in the outcome of the study. Wilson replies that he is an unpaid consultant to Genovo, the biotech company that would profit from the research.

It was only later that Gelsinger learned that Wilson in fact owned a 30% share of Genovo. The following year, when it was sold to another biotech firm, Wilson received $13.5 million in stock.

The moral from my pov: Until these kinds of conflicts of interest are eliminated, research subjects will never be safe.

Previously on Biopolitical Times:





Burying the Lead

Posted by Osagie Obasogie on April 7th, 2008


A research article published in this week's Proceedings of the National Academies of Sciences has a finding on sex selection that has startled some in the media: American couples of Chinese, Korean, and Indian heritage are unusually likely to have a boy if they already have girls. This suggests that these families have a son-preference leading them to select the sex of their second or third child to ensure that it is male. While the American media have frequently reported on sex selection and shifting sex ratios abroad, this seems to be the first empirical evidence that the practice and its consequences do not simply happen "over there."

The authors do not speculate which sex selection techniques couples are using. But the article and its coverage play into a popular yet problematic framing: son-preference and sex selection are posed only as demographic problems where choosing too many boys means that there won't be enough girls to marry them when they grow up. This fixation with sex ratios obscures the human stories behind these selection technologies, where women are often treated brutally for not delivering boys and unwanted female children are sometimes cruelly neglected. For a more comprehensive perspective on the social conditions surrounding sex selection, check out this online journal written by Sunita Puri based upon her extensive research into the lives affected by sex selection.





What makes surrogacy like military service?

Posted by Marcy Darnovsky on April 4th, 2008


The unexpected finding in Newsweek's cover story about surrogacy in the U.S. is the preponderance of military wives among the women who sign up to carry and bear other people's babies: "IVF clinics and surrogate agencies in Texas and California say military spouses make up 50 percent of their carriers."

As the article makes clear, a key force driving this phenomenon is money.

It is an act of love, but also a financial transaction….Military wives who do decide to become surrogates can earn more with one pregnancy than their husbands' annual base pay (which ranges for new enlistees from $16,080 to $28,900).
Another factor is the nomadic nature of military life. According to one surrogacy broker, "Military wives can't sink their teeth into a career because they have to move around so much."

The article also focuses on the surrogates' desires to help other people, "to contribute, do something positive." Military wives are portrayed as particularly prone to such sentiments:
"In the military, we have that mentality of going to extremes, fighting for your country, risking your life," says Jennifer Hansen, 25, a paralegal who's married to Army Sgt. Chase Hansen…."I think that being married to someone in the military embeds those values in you. I feel I'm taking a risk now, in less of a way than he is, but still a risk with my life and body to help someone."
In fact, there are additional similarities between surrogacy and military service. Both involve putting your body and health on the line for a cause. Both require giving up some of the autonomy that most adults take for granted: Other people claim control over what you eat, drink, and do; when and where you travel. And your commitment is 24/7 for the duration of the tour of duty: the only outs are AWOL in the military and abortion in a surrogacy arrangement.

All the surrogacy business needs now is recruiters. But wait - they already have those:
Surrogate agencies target the population [of military wives] by dropping leaflets in the mailboxes of military housing complexes, such as those around San Diego's Camp Pendleton, and placing ads in on-base publications such as the Military Times and Military Spouse.

I wonder if any of those leaflets are headlined "Looking for a few good women."

Previously on Biopolitical Times:







Facts on the Ground

Posted by Jesse Reynolds on April 2nd, 2008


Researchers in the United Kingdom announced yesterday that they had successfully created (mostly) human clonal embryos using animal eggs. These hybrid embryos, intended for stem cell research, were able to divide to thirty-two cells over three days. That's not quite enough to be able to extract stem cells.

It's discouraging enough that this development was announced via a press release, and not a peer-reviewed publication, particularly so soon after an editorial in Nature decrying haste to publication in stem cell science. The announcement also comes just as the contentious Human Fertilisation and Embryology Bill is reaching the UK Parliament, with this very human-animal hybrid cloning process one of the most controversial platforms.

One need not be that cynical to believe that these researchers are trying to change the "facts on the ground" for the upcoming debate.





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