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The research ethics committee is not the enemy: oversight of community-based participatory research
1Georgia State University College of Law, Atlanta, GA 30302-4037, USA. lwolf@gsu.edu
Abstract:
Researchers conducting community-based participatory research (CBPR) often complain about research ethics committee (REC) oversight of their research. RECs may contribute to researchers' frustrations by seemingly focusing on form over substance and by failing to communicate effectively with researchers about their mission and their specific concerns. UCSF CBPR researchers presented their views of the UCSF REC's review of its tobacco use study in "It's Like Tuskegee in Reverse: A Case Study of Ethical Tensions in Institutional Review Board Review of Community-Based Participatory Research." This article builds on that case study by providing some perspectives from the REC side, identifying how the researchers and the REC came to be at odds, and seeking to bridge the gap between the CBPR and REC worlds. In particular, the article explores the different perspectives on who are human subjects under the federal regulations in CBPR research, who counts as the community, and the purpose of REC oversight. It offers concrete suggestions for improving the relationship between CBPR researchers and RECs.
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