Introducing the Downtown Eastside Community Research Ethics Workshop: Notes on a Process for Community Ethics Review

In Emily E. Anderson (ed.), Ethical Issues in Community and Patient Stakeholder–Engaged Health Research. Springer Verlag. pp. 299-322 (2023)
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Abstract

In this chapter, we share our process working together in Vancouver’s Downtown Eastside (DTES) neighborhood to develop a “community ethics” for research. How members of a community understand key components of research ethics may differ from how formal ethics policies and institutional Research Ethics Boards (REBs) understand or apply ethics concepts. Building on our experience creating a set of community guidelines for ethical research, we piloted a form of community ethics review in the DTES that we came to refer to as the “Community Research Ethics Workshop” or CREW. In the CREW process, members of the community where proposed research will take place are empowered to perform a unique kind of ethics review. This is guided by their personal knowledge of community norms of respectful practice, personal and community histories of interactions with outsider researchers, and personal understandings of vulnerabilities, risks, and protocols for protecting the well-being of their fellow community members. Because of their lived experience regarding what constitutes ethical and respectful practice in their community, community ethics reviewers may be able to identify ethical issues and suggest proposal revisions that institutional REB members may never consider, let alone understand how to integrate or implement in the research process itself.

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