Abstract
Community based research is conducted by, for, and with the participation of community members, and aims to ensure that knowledge contributes to making a concrete and constructive difference in the world (The Loka Institute 2002). Yet decisions about research ethics are often controlled outside the research community itself. In this analysis we grapple with the imposition of a community confidentiality clause and the implications it had for consent, confidentiality, and capacity in a province-wide community based research project. Through untangling these implications we provide recommendations for reframing how to think about research ethics and strategies for enabling research ethics’ processes to be more responsive to and respectful of community-based research.
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For example: participatory action research, participatory research, action research, collaborative research, feminist action research, feminist-informed participatory action research, community-based participatory research.
In recognition that each person in the research team has an effect on the research process, each person is expected to reflect upon, or examine, how their own assumptions and worldviews affect and are affected by the research.
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This paper is written in the spirit of community-based research with the intent of reaching a diverse audience by using non-academic language. For an academic treatment of this topic the reader should consult: Reid, Colleen, Ponic, Pamela, Hara, Louise, Ledrew, Robin, Kaweesi, Connie, and Besla, Kashmir. (under review). Living an ethical agreement: Negotiating confidentiality and harm in a feminist participatory action research project. In G. Creese and W. Frisby (Eds.) Feminist Methodologies in Community Research. Vancouver BC: UBC Press.
Appendix: Questions for Small Group Discussions
The questions for small group discussions were posed at the NCEHR Conference in Ottawa, Canada February 2009.
Appendix: Questions for Small Group Discussions
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Reid, C., Brief, E. Confronting Condescending Ethics: How Community-Based Research Challenges Traditional Approaches to Consent, Confidentiality, and Capacity. J Acad Ethics 7, 75–85 (2009). https://doi.org/10.1007/s10805-009-9085-0
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DOI: https://doi.org/10.1007/s10805-009-9085-0