Understanding community-based processes for research ethics review

Institutional Review Boards (IRBs), designed to protect the rights and welfare of individual study participants, are neither expected nor equipped to protect the rights and welfare of communities involved in research. A number of community groups and community-institutional partnerships have established their own community-based processes for research ethics review that operate independently, in parallel or in collaboration with institution-based IRBs. To better understand these processes, we conducted an online survey of community groups and community-institutional partnerships in the U.S. involved in research with funding from the Greenwall Foundation. We identified 109 community-based processes for research ethics review that operate through a wide range of structures, from committees that report to a community-based organization's board of directors to community-advisory boards that vet all research conducted in a community to coalition-based IRBs that review research conducted by their member community organizations. We found their main reasons for forming include ensuring that the involved community is engaged in and directly benefits from research and is protected from possible research risks. Among the benefits cited for having a process are being able to assure that communities have a voice in determining which studies are conducted in their communities and that the research is relevant, feasible and builds community capacity. In our presentation, we will report our survey findings, recommend ways to strengthen ethics review of community-engaged research, and describe a collaborative network that is forming between the study team and survey respondents to conduct case studies of their review processes.