• IRB: ETHICS & HUMAN RESEARCH

Conceptions of Risk Regarding a Chronic Illness Survey: Perspectives of Participants, Researchers, and Ethics Review Board Members

Risk assessment is key to ethics review, yet we know little about how research participants experience risk in survey research. We tackle this deficit in this Canadian case study of a chronic illness survey. We interviewed research participants, researchers, and review ethics board (REB) members’ about their involvement in the same chronic illness survey. Here we report on a key difference to emerge in our analysis: the research participants reflected on the impact survey completion had upon them, while the researchers and REB members discussed how they had anticipated the potential risks to the participants. This illustrated a pivotal breach between formal governance of risk assessment and the meanings survey completion held for the research participants. This disjuncture suggests that in some cases, impact may be a more appropriate conceptualization on which to base ethical assessments than is risk. Further investigation is needed to explore participants’ experiences of research and the implications for governance.

Townsend A, Taylor K, Cox S. Conceptions of risk regarding a chronic illness survey: Perspectives of participants, researchers, and ethics review board members. IRB: Ethics & Human Research 2014;36(5):13-20. Holzer will be the free article from the issue.