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

摘要

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.