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Community inspired ethics: Lessons from a participatory project to interpret ethics with African American communities in the Blackbelt south

Douglas Taylor, The Southeast Community Research Center, P.O. Box 5731, Atlanta, GA 31107, 404.373.6688, D.Taylor@CBPR.org and Stephen Sodeke, PHD, National Center For Bioethics In Research and Health Care, Tuskegee University, Drew Hall, Room 106, Tuskegee Institute, AL 36088.

Ethical guidelines governing research and protecting human subjects have been written by formally-trained experts and largely reflect their perspective. Research ethics has not involved the public in any substantive way in the development of ethical standards and policies. Lack of public input is nowhere more pronounced and pernicious than in communities of color and other marginalized populations.

To enrich democratic decision-making in research ethics, and to amplify the voices from African-American and other minority communities, Tuskegee University National Center for Bioethics, with the Southeast Community Research Center, are conducting the Communities of Color and Bioethics: Expanding the Debate project (COCB). COCB is engaging communities throughout the Blackbelt south (one of the poorest regions in the U.S.) in discussions on their experiences with health professionals, their views on what are ethical practices, and their vision for a healthy community and the role that the resources and people in the health sector ought to play in realizing that vision. Our project has employed various forms of participatory and popular education methods to ensure that the work is community-centered and that the project recognizes and addresses power imbalances between community and researcher participants.

Now in the 3rd year of our investigation, this presentation will share our findings, insights, and recommendations for promoting voices from marginalized communities in the discussion on the ethics of health practice. Along with lessons learned, we will identify and rehearse the participatory tools we employed to improve communication and to achieve project objectives with our community partners.

Learning Objectives:

Keywords: African American, Community Collaboration

Related Web page: www.CBPR.org

Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.

Environmental Justice and Advocacy

The 132nd Annual Meeting (November 6-10, 2004) of APHA