The Tensions of Unity: Challenges of Community-Centered Research

Historically, there are numerous examples of how medical and other types of research have not adequately protected the interests of the community (of patients or others) that is studied. The most infamous example is the Tuskegee Project, which examined the progression of syphilis in a group of African-American men. Although improved treatment became available before the end of the project, the researchers chose to continue observing the progress of the disease rather than inform their study participants that effective treatment was now available. This sad story offers perhaps the most salient and now well-known example of how a community was mistreated in the name of science and research, but there are many other examples in the annuals of bioethics. As a result of such incidents, as well as many other factors, communities often view health research as "outsider-centered" rather than focusing on addressing their own needs. Further, "outsider-centered research" often is seen as taking something (e.g., data) away from the community to achieve "outsider" goals, rather than sharing findings with the community and contributing to community well-being. Given this historical context of human research, often conducted with a colonial sense of authority and indisputable importance, we can understand the mistrust of research that we regularly encounter in the communities we study. This mistrust is also present among frontline social service and health support providers, individuals who commonly come from and define them-selves as members of the communities they serve.