Anthropologyworks alerts us to an article in the Chronicle of Higher Education about medical anthropologist Roberto Abadie and his new ethnography on professional research subjects in clinical trials. As the article explains, “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… to test the safety of new drugs,” (Glenn 2010). While bioethicists have debated whether paying volunteers constitutes “‘undue inducement’ that might tempt them to take risks against their better judgment,” (Glenn 2010) little empirical work has been conducted on the people actually taking these risks. However:
“But now an anthropologist has produced a study of several dozen medical volunteers…. 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,” (Glenn 2010).
David Glenn, 2010. “Inside the Risky World of Drug Trial ‘Guinea Pigs.’” The Chronicle of Higher Education.
Roberto Abadie, 2010. The Professional Guinea Pig: Big Pharma and the Risky World of Human Subjects (Duke University Press).