Community-based participatory research: ethics and outcomes

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This paper outlines the findings of a scoping study examining ethical issues in community-based participatory research (CBPR), based on a literature search and the deliberations of a co-inquiry action research group. The search indicated a range of research approaches claiming to be participatory and community-based, showing significant variation in degrees of participation and community control. Ethical challenges in CBPR include matters relating to: partnership, collaboration and power; community rights, conflict and representation; ownership and dissemination of data, findings and publications; anonymity, privacy and confidentiality; institutional ethical review processes; and blurred boundaries between researcher and researched, academic and activist. While many of these issues are common in qualitative social research, what is distinctive about CBPR is the openness, fluidity and unpredictability of the research process. It is often complicated by multi-layered partnerships based on the negotiation of power relations between diverse groups (with specific histories, politics, cultures and personalities), whilst also being constrained by rigid structures of research governance. Recommendations include: the adoption of specific ethical guidelines for CBPR by UK researchers, funders and sponsors; ethnographic research on the CBPR process; a search of grey literature for accounts of CBPR from community perspectives; and further longitudinal research on outcomes of CBPR.