title: "Walking along beside the researcher": how Canadian REBs/IRBs are responding to the needs of community-based participatory research.
abstract: Research ethics boards and institutional review boards (REBs/IRBs) have been criticized for relying on conceptions of research that privilege biomedical, clinical, and experimental designs, and for penalizing research that deviates from this model. Studies that use a community-based participatory research (CBPR) design have been identified as particularly challenging to navigate through existing ethics review frameworks. However, the voices of REB/IRB members and staff have been largely absent in this debate. The objective of this article is to explore the perspectives of members of Canadian university-based REBs/IRBs regarding their capacity to review CBPR protocols. We present findings from interviews with 24 Canadian REB/IRB members, staff, and other key informants. Participants were asked to describe and contrast their experiences reviewing studies using CBPR and mainstream approaches. Contrary to the perception that REBs/IRBs are inflexible and unresponsive, participants described their attempts to dialogue and negotiate with researchers and to provide guidance. Overall, these Canadian REBs/IRBs demonstrated a more complex understanding of CBPR than is typically characterized in the literature. Finally, we situate our findings within literature on relational ethics and explore the possibility of researchers and REBs/IRBs working collaboratively to find solutions to unique ethical tensions in CBPR.
authors.affiliation: University of Toronto, Dalla Lana School of Public Health, 155 College Street, Toronto, Ontario, Canada. adrian.guta@utoronto.ca
authors.forename: Adrian
authors.initials: A
authors.lastname: Guta
authors.forename: Stephanie
authors.initials: S
authors.lastname: Nixon
authors.forename: Jacquie
authors.initials: J
authors.lastname: Gahagan
authors.forename: Sarah
authors.initials: S
authors.lastname: Fielden
mesh_terms: D002170:Canada; D055812:Community-Based Participatory Research; D003159:Community-Institutional Relations; D017041:Ethics Committees; D028744:Ethics Committees, Research; D006801:Humans