Ethics and integrity issues considered by community-based research ethics review processes

Introduction: To ensure the ethics and integrity of the research in which they and their communities are engaged, a growing number of community groups have developed their own research ethic review processes that operate independently or in conjunction with institution-based Institutional Review Board (IRBs). Our prior study identified 109 community groups across the U.S. with such processes in place. We conducted a national collaborative study documenting the contributions they make to ensure the ethics and integrity of community-engaged research (CEnR). To gain an in-depth understanding of how these review processes function in comparison to institution-based IRBs, CCPH partnered with five community-based organizations to conduct a cross-case analysis.

Approach: In year one, we analyzed data obtained through structured interviews, focus groups and reviews of documents from 2 community IRBs and 3 community-based research review committees. We also interviewed community and academic researchers whose protocols were reviewed by the community-based review process and an institutional IRB.  In year two, we conducted a cross-case analysis drawing on the individual case studies and a focus group held with the study team.

Results: All of the community-based review processes accounted for community-level considerations (i.e., risks and benefits), cultural considerations (i.e., appropriateness of research design, research team composition), partnership considerations (i.e., issues of equity; data ownership), and dissemination plans.

Discussion: We will discuss how community-based review processes consider issues traditionally assessed by institutional IRBs PLUS community, partnership and cultural factors. This additive approach to reviewing proposals can result in a more rigorous review process.