"Since 1980, when Phase 1 drug tests on prisoners were banned in the United States, university medical schools and pharmaceutical companies have depended on volunteers like Mr. Little to test the safety of new drugs. Bioethicists have devoted thousands of pages to debates about the system. Some fear that high payments for volunteers are an "undue inducement" that might tempt them to take risks against their better judgment. Others say that people like Mr. Little are consenting adults who are reasonably capable of assessing danger.
"Most of those debates have been conducted in the abstract. But now an anthropologist has produced a study of several dozen medical volunteers, including Mr. Little. Roberto L. Abadie, a visiting scholar in the health-sciences program at the Graduate Center of the City University of New York, spent a year living in youth hostels and group houses in Philadelphia, trying to get a sense of why volunteers do what they do and how they understand their risks.
"He offers his findings in The Professional Guinea Pig: Big Pharma and the Risky World of Human Subjects (Duke University Press, August). The book's primary purpose is to offer a detailed description of medical volunteering and its contexts, not to weigh in on the ethics of clinical trials. But after his year in the field, Mr. Abadie does have opinions about policy: Volunteers underestimate their long-term risks, he says, and universities should do more to protect them."..."Mr. Abadie spent time with anarchist activists who are attracted to guinea-pigging because of the flexibility it offers. Between 1996 and 2002, that milieu was documented in Guinea Pig Zero, a Philadelphia zine published by and for activist medical volunteers.
"But Mr. Abadie's book also examines two other types of medical volunteer. First, he describes transient, economically struggling people who travel from place to place in search of lucrative trials. These volunteers are often less educated and more socially isolated than the anarchists.
"Second, Mr. Abadie spent months at an HIV clinic where patients were participating in long-term trials to determine the effectiveness of new drug combinations. That environment is very different from the Phase 1 trials described elsewhere in the book. At the clinic, the HIV patients knew they had a personal stake in the development of new drugs, and the financial compensation they received was much smaller. Even though they were taking risks by participating in the drug studies, Mr. Abadie says, those volunteers seemed to reap psychological gains."
I'm reminded that we teach kids that the tooth fairy buys their baby teeth for money. But of course many sales of body parts are regarded as repugnant transactions and are illegal, while paid drug trials are legal.
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