The "mild-torture economy": exploring the world of professional research subjects and its ethical implications

Abstract

Abstract This paper documents the emergence of the subject of professional research in Phase I clinical trials that test the safety of drugs in development. Based on ethnographic research among subjects self-identified as "professional guinea pigs" in Philadelphia, USA, it examines their experiences and opinions on the conduct of trials and risks they take. The author argues that the risks posed by the continued participation, such as exposure to potentially dangerous drug interactions are minimized or ignored by research subjects because of the prospect of financial gain. Risks to the professional guinea pigs are also ignored by the pharmaceutical industry, which has become dependent on the usual participation of experienced research subjects. Arguing that financial incentives undermine the ethical imperative of informed consent to be given freely by volunteers, this research confirms the need to reform the policies governing the participation of paid subjects in Phase I clinical trials.