Phoebe Friesen

Significant strides have been made within systems of research ethics oversight through the development of indigenous-run research ethics boards (REBs). By transferring power and authority over the process of research ethics review, the likelihood that past research harms will be repeated is decreased and the chances of ensuring direct benefits to communities through research are increased. While the development of such boards should be celebrated, increasing demands can be heard from other marginalized communities who also wish to have a say in processes of research ethics oversight. In Canada, community members recently released A Manifesto for Ethical Research in the Downtown Eastside, Quebec Native Women Inc. put forward Guidelines for Research with Aboriginal Women, while community-research exchanges have been established in order to facilitate research that directly benefits communities (e.g. CURE Montreal). Across the border, community-based REBs have sprung up in the Bronx and San Francisco, seeking to protect the rights of those in communities that often experience research as exploitative. Like indigenous communities, these settings also attract a significant number of short-term researchers, have experienced a history of harms within research, and often see projects that benefit researchers more than communities. The demands of these communities raise several difficult questions: 1) Which communities deserve more agency in research ethics oversight and why? 2) How might we define and delineate such communities when there is no clear structure of leadership? 3) What forms of involvement might appropriately support these demands? A preliminary proposal that seeks to address these questions is offered, including justifications for community involvement in research ethics oversight and suggestions for how we might identify community boundaries and engage community members in processes of research ethics review. Concerns related to representation and increased burdens on marginalized communities are also considered. Keywords: Community involvement, burdens on marginalized, appropriate involvement