<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> / Thesis / Doctor of Philosophy (PhD)
| Identifer | oai:union.ndltd.org:mcmaster.ca/oai:macsphere.mcmaster.ca:11375/17482 |
| Date | 11 1900 |
| Creators | Hayden, Leigh |
| Contributors | Warry, W., Anthropology |
| Source Sets | McMaster University |
| Language | en_US |
| Detected Language | English |
| Type | Thesis |
Page generated in 0.002 seconds