Volume 7, Numbers 1-2, 75-85, DOI: 10.1007/s10805-009-9085-0

Confronting Condescending Ethics: How Community-Based Research Challenges Traditional Approaches to Consent, Confidentiality, and Capacity

Colleen Reid and Elana Brief

From the issue entitled "Special Issue: Transitions: The Changing Landscape of Human Participant Protection Selected Proceeding from the 2009 Conference of the National Council on Ethics in Human Research Varia: Selected papers from the NCEHR Conference on Research Ethics in the Context of Sectoral Violence"

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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.

Keywords  Community based research - Community confidentiality - Research ethics - Women’s health

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.

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