A Public Culture For Guinea Pigs: US Human Research Subjects after the Tuskegee Study

This article explores an emerging culture and politics of ‘voluntary’ human research subjects in the United States. In the cultural studies and anthropology of science and medicine, we have become used to the voice of patients challenging and contradicting the voices of medical and scientific authority. Generally, however, our research has been the media which brings these discourses into juxtaposition. Rarely have patients organized themselves as a political mass to contest medical discourse directly. Some exceptions are the cases of activist patient cultures, which have tended to form around particular diseases, e.g. cancer, AIDS, Gulf War Syndrome, and environmental illness. These remain ambiguous in their etiology and thus provide a space for interpretation (cf. Dumit, 1998; Epstein, 1996; Fortun, 1996; Stacey, 1997).