Bodies of Science: The Experiences of Human Research Participants of Health Studies

Abstract

<p> This dissertation examines my investigation of the experiences of participants of university-based health research. My primary research questions were: (1) Why do people participate in health research, despite its risks? (2) Why are people asked to participate in health research? (3) What factors influence local research environments? I employed a critical-interpretive medical anthropology framework to investigate and describe three studies: a Phase 2a asthma drug study, a Phase 1 oncology drug study, and a muscle regeneration study. I followed each of these studies, conducting hundreds of hours of participant observation and interviewing 31 participants multiple times during the course of their enrolment. To learn about the organization and governance of university-based health research I also interviewed researchers, research coordinators, and ethics experts. In addition, I conducted participant observation at three different research ethics boards (REBs) and two industry conferences. Participant enrolment was significantly influenced by: belief in the "good" of medical research, the enjoyment they experienced as former participants, and desire to receive benefit, including remuneration and possible health benefits. Participation often entails long hours, and much of this time is spent socializing with the research team. Participants often develop trusting relationships with the research team, and learn to adopt its scientific language, in addition to its interests and perspectives. Thus, participants rarely question how research is funded and who ultimately benefits from research. They also do not identify as participants, but rather as volunteers or guests. This is a significant obstacle for participant organization. Since they are not organized to voice their interests collectively, REBs are responsible for protecting their interests. Research ethics board focus almost exclusively on reducing risk and rarely address increasing the potential benefit of researcher to the participants. I conclude my analysis with recommendations for REBs, policy makers, and researchers.</p>