Resources to Advance Research Ethics & Integrity in Community-Based Participatory Research

Community-based participatory research (CBPR) raises research ethics and integrity considerations that go beyond those normally assessed by Institutional Review Board (IRBs). CBPR represents a shift from regarding individual community members as research subjects to engaging community members and the organizations that represent them as research partners. Institution-based IRBs, designed to protect the rights and welfare of individual study participants, are less equipped to protect the rights and welfare of communities involved in research.

A national organization founded in 1996, Community-Campus Partnerships for Health (CCPH) promotes health through partnerships between communities and academic institutions. Its strategic goals are to leverage the knowledge, wisdom and experience in communities and in academic institutions to solve pressing health, social, environmental and economic challenges; ensure that community-driven social change is central to community-academic partnerships; and build the capacity of communities and academic institutions to engage each other in partnerships that balance power, share resources, and work towards systems change.

CCPH members have consistently expressed interest in deepening their understanding of the research ethics review process and strategies for assuring the ethics and integrity of research conducted in communities. CCPH began collaborating with the Tuskegee Bioethics Center in 2007 to organize a call series on CBPR ethics, publish the report “Ensuring Community-Level Research Protections,” launch a CBPR ethics listserv and convene a workgroup that is developing a CBPR curriculum for IRBs. This presentation will report on results of these and other initiatives, highlight resources they produced, and make recommendations for strengthening ethics review of CBPR.