Community-Based Participatory Research in United States Bioethics: Steps Toward More Democratic Theory and Policy

In Spring 2003, The American Journal of Bioethics (AJOB) published my article, "Differences From Somewhere: The Normativity of Whiteness in Bioethics in the United States" (Myser 2003). Here I argue that there has been inadequate attention to the dominance of whiteness in the cultural construction of U.S. bioethics, risking the reproduction of white privilege in its practice. Because most commentators missed the importance of community- based participatory research (CBPR) as one method proposed for greater democracy in bioethics theorizing and policy making, I will briefly discuss this practical bioethics and social justice work that directly evolves from and complements the theoretical work of my AJOB article. By describing some of my own collaborative pluralist and democratic bioethics work to date, I hope to answer the question:

What does...[white studies and critical race theory] have to do with bioethics...what practical effect...does it have for confronting and understanding the central dilemmas of bioethics...[e.g.] to eliminate [racial] mistrust some groups have toward medicine...[and]...useful medical research studies or health screening programs?

(The New Atlantis Editors 2003)

I also hope to encourage bioethicists to work in partnerships with the public that are more diverse and egali-tarian¹ , as one obligation of professionals and citizens in a pluralistic democracy.

I was introduced to the CBPR method at Tuskegee University's National Center for Bioethics in Research and Health Care² , and adapted it for bioethics work in collaboration with CBPR expert Douglas Taylor³ . Our goal was to develop CBPR to serve as an instrument for public engagement and social justice—to incorporate the values and priorities of marginalized ethnic and socioeconomic communities—for greater democracy and more useful public service through bioethics research. The project was initiated at Tuskegee in 2001 under Bioethics Director Marian Secundy,⁴ and is ongoing under the leadership of Taylor, collaborating with and serving African Americans in the "Blackbelt"⁵ region in Southeastern United States.

CBPR is a practical mechanism for redistributing power and increasing social justice⁶ , a method to engage more diverse voices in the cultural construction of bioethics⁷ . The basic idea involves building equal collaborations between professionals and laypersons from marginalized communities to: 1) identify what counts as compelling bioethics issues for the community in question; 2)determine what research method(s) can best explore and/or remedy such issues; 3) address relevant inequities affecting the community; and 4) develop and disseminate any research "products" to the mutual benefit of all parties. "Researchers" and "participants" are interactively linked, without a hierarchical relation serving as a means of cultural control. Thus, social meanings, values, and bioethics issues, standards and policies must be socially negotiated and constructed. Key methodological distinctions of CBPR are: how knowledge is produced (relationally), by whom, and to what end it is disseminated (for the mutual benefit of all partners, with a special focus on addressing inequities affecting marginalized communities).

One of the successes of this dialogic approach to bioethics is that some of those who have previously been "acted upon" (e.g., African American research subjects and community members affected by the Tuskegee syphilis study) are through CBPR becoming actors contributing to the construction of bioethics theory and policies. There are complex challenges for such collaborations, however, especially in a politically-fraught setting such as Tuskegee. AJOB commentator Sandra Anderson Garcia (2003) echoes concerns raised by Tuskegee administrators, faculty, and community members during the course of our project —relating to the effects of "colonized minds" and "[giving] up . . . trying to displace whiteness from the center of American society."⁸ Garcia's caveat that "decolonizing the minds of both colonizers and . . . colonized has been, and probably always will be difficult" strikes at the heart of a range of "trust" challenges that must be addressed throughout a CBPR project. In...