Community-Based Processes for Research Ethics Review: Findings from a National Study

As partners in the research process, a growing number of community groups are implementing review processes for research ethics that operate independently, in parallel or in conjunction with institution-based institutional review boards (IRBs). With the exception of federally recognized community IRBs, these are not mandated or regulated.

With support from the Greenwall Foundation, we conducted the first systematic study of community-based processes for research ethics review. We identified and described 109 operating and 30 emerging community-based processes for research ethics review in the U.S and found a number of reasons for their development, including (a) enhancing community protections in research by assuring that community considerations be taken into account, (b) assuring community ownership of the review process; and (c) responding to dissatisfaction with institution-based IRB processes. The reported benefits of having a review process included assuring that the research conducted within one's community is relevant and feasible, as well as assuring community benefit and minimizing risks. The process itself was also seen as allowing greater community voice in determining which studies should be conducted, as well as creating opportunities for building capacity. Thus, the process was perceived as helping to strengthen community support for and trust in research, as well as increase research rigor and quality.

This presentation will highlight findings from the study and describe possible scenarios for a research ethics review system that includes both community-based and institution-based review mechanisms.