Who owns your consent? How REBs give away participants’ agency

Abstract

We draw on three illustrative vignettes to examine how REBs manage participants’ agency in the context of qualitative research. We ask: Who owns a participant’s consent? Central to informed consent is the principle of Respect for Persons, which privileges the autonomy of individuals to make decisions about what happens (or not) to them. Yet, REBs sometimes require researchers to get permission from organizations to conduct research on their current and former members, even when the research is not about those organizations. Our aim is to raise awareness about the inherent contradictions of this practice and to consider guidelines for determining the appropriateness of involving organizations that may be tangentially connected to the research objectives or potential participants.