“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.

“We’re giving you something so we get something in return”: Perspectives on research participation and compensation among people living with HIV who use drugs

“…Furthermore, we suggest that those involved in the research apparatus consider how participants perceive their involvement in research and design research compensation guidelines accordingly. Specifically, ethics boards’ and institutions’ compensation guidelines should ensure that structurally vulnerable participants are respectfully compensated and that their agency is not restricted through paternalistic compensation methods as a form of ‘protection.’ There are examples of research ethics boards working with researchers to develop a mutually supportive review cultures and processes (Guta, Nixon, Gahagna, & Fielden, 2012). This is particularly significant, as concerns regarding the potential harms of compensation for structurally vulnerable populations have not been substantiated.…”

Awareness of Federal Regulatory Mechanisms Relevant to Community-Engaged Research

“…Study of IRB challenges should not be confined to CEnR/CBPR as there may be shared barriers across designs and approaches. IRB member and administrator views of, approaches to, and experiences with CEnR/CBPR are complex and also worthy of deeper exploration in order to identify effective solutions (Guta, et al, 2012; Shore, 2007; Wolf, 2010). …”

Bringing the IRB into the Community: A New Framework for the Ethical Regulation of CBPR

“…Historically, Canadian IRBs and Research Ethics Boards have done a better job of comprehensively evaluating CBPR methods and protocol necessary in order to successfully execute CBPR studies [16]. More importantly, they have been more open to evaluating their existing IRBs with respect to community-based research and make appropriate changes [16].…”

“…More importantly, they have been more open to evaluating their existing IRBs with respect to community-based research and make appropriate changes [16]. After evaluating seven different institutional review boards across Canada, most agree that effective communication and understanding from IRBs on how CBPRs operate is critical to their success.…”

“…After evaluating seven different institutional review boards across Canada, most agree that effective communication and understanding from IRBs on how CBPRs operate is critical to their success. They recognized that, although they had a basic understanding of communitybased research, it was difficult with the ingrained IRB framework to approve such studies [16]. Furthermore, board members were often not fully aware of the negative effects some biomedical studies could have on the community, such as cultural concerns, lack of resources, etc.…”