Community health workers support community-based participatory research ethics: lessons learned along the research-to-practice-to-community continuum

Abstract

Ethical principles of community-based participatory research (CBPR)--specifically, community engagement, mutual learning, action-reflection, and commitment to sustainability--stem from the work of Kurt Lewin and Paulo Freire. These are particularly relevant in cancer disparities research because vulnerable populations are often construed to be powerless, supposedly benefiting from programs over which they have no control. The long history of exploiting minority individuals and communities for research purposes (the U.S. Public Health Service Tuskegee Syphilis Study being the most notorious) has left a legacy of mistrust of research and researchers. The purpose of this article is to examine experiences and lessons learned from community health workers (CHWs) in the 10-year translation of an educational intervention in the research-to-practice-to-community continuum. We conclude that the central role played by CHWs enabled the community to gain some degree of control over the intervention and its delivery, thus operationalizing the ethical principles of CBPR.

Figure 1

Educational program to increase colorectal cancer screening: research-to-practice-to-community continuum.