Community-Based Participatory Research, Ethics, and Institutional Review Boards: Untying a Gordian Knot

Abstract

Community-based participatory research (CBPR) poses ethical challenges that are distinct from biomedical research. These arise from the epistemological differences between traditional biomedical research paradigms and CBPR, as the latter entails ongoing engagement of communities in research from development to dissemination. Biomedical research typically poses research questions and obtains ethics review before engaging with the population or community of interest. While institutional review board (IRB) practices seek to minimize harm in research conducted with human subjects, traditional IRB review can introduce new or exacerbate existing ethical challenges when reviewing non-traditional research protocols. In what follows, we seek to: define CBPR; identify unique ethical obligations in CBPR; pose potential solutions for amending the IRB process to support CBPR; and facilitate a research ethics framework that aims to reduce the exploitive and appropriational tendencies in research by inviting researchers, IRBs, and communities into a collaborative effort aimed at best practices.