"What Do They Really Mean by Partnerships?" Questioning the Unquestionable Good in Ethics Guidelines Promoting Community Engagement in Indigenous Health Research.

Abstract

Academics and community members collaborated in research to examine how best to apply ethics guidelines for research involving Indigenous communities in a community with complex and multiple political and cultural jurisdictions. We examined issues of NunatuKavut (Southern Inuit) authority and representation in relation to governance of research in a context where community identity is complex and shifting, and new provincial legislation mandates centralized ethics review. We scrutinize the taken-for-granted assumption of research ethics that community engagement is an unquestionable "good." We examine the question of whether and how research ethics guidelines and associated assumptions about the value of community engagement may be grounded in, and inadvertently reinforce, ongoing colonialist relations of power. We present findings that community engagement-if done uncritically and in service to ethics guidelines rather than in service to ethical research-can itself cause harm by leading to community fatigue, undermining the community's ability to be effectively involved in the research, and restricting the community's ability to have oversight and control over research. We conclude by suggesting that the laudable goal of engaging communities in research requires careful reflection on the appropriate use of resources to operationalize meaningful collaboration.