ENGAGING MINORITY COMMUNITIES IN GENETICS POLICY MAKING

University Of Michigan At Ann Arbor, Ann Arbor MI

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Abstract

This renewal project, conducted by a consortium of three universities (University of Michigan, Michigan State University and Howard University) builds upon the initial project which conducted a series of public dialogues developing policy recommendations to guide the use of genome technology related to reproductive decision-making. The renewal project will develop a process for engaging minority populations of diverse socioeconomic levels in the process of rational democratic deliberation on moral and political issues relating to genome research and its resulting technology, and will develop recommendations for laws, professional standards and institutional policies regarding the use and application of genome research and technology. 15 African American and Latino community-based organizations in Michigan and Washington/Baltimore will identify participants for focus groups and for a series of five dialogue sessions held in the "home" communities. Focus groups will identify a menu of issues of concern, and dialogue sessions will discuss the issues and develop recommendations. Regional community policy meetings attended by all group participants will convert dialogue group output into specific policy recommendations. Both the recommendations and the process used in their development will be analyzed, with dissemination of recommendations and lessons learned to the public, policy-makers, health educators and practitioners. A Community Advisory Board, with representation from community-based organizations participating in the project, will provide input to all project phases. Qualitative and quantitative methods will be used to evaluate both process and outcome, with comparisons to the initial project.