Objectives: Identify genetic policy issues of concern in African American and Latino communities and the general population. Evaluate focus group and community dialogue methodologies. Abstract Text Background: Average citizens, especially the underserved, are frequently left out of genetic policymaking. Since 1995 the National Human Genome Research Institute (NHGRI) - Ethical, Legal, and Social Implications (ELSI) Program has funded a project to engage citizens, particularly those with voices traditionally not heard, in a process of rational democratic deliberation on genetics issues. Methods: Project Segment I involved community dialogues of 30-50 citizens from the general population in seven Michigan cities to assess values and engage in consensus building. Starting 1999 the project worked with community-based organizations to form groups of varied income consisting entirely of African American and Latino citizenry in Michigan and Tuskegee, Alabama. Policy recommendations are arrived at via policy gatherings and analysis. Results: Mistrust of government and non-minority medical professionals and desire for protection from genetic discrimination have been common themes. Reaction in Segment I was mixed on requiring genetic testing to guarantee occupational and public safety. Willingness to ensure equal access through subsidies varied with type of genetic service. Segment II (1999-) has identified five clusters of common concerns, from misuse of genetic information to access inequities, with differences of priority by SES. Conclusions: Participants in genetic dialogues can gain increased understanding of the issues and values at stake, and greater tolerance for the policy choices others make. Citizens with disparate backgrounds can meaningfully contribute to policy formation.
Learning Objectives: During this session, the presenter will discuss ongoing research assessing areas of public concern in the use of genetic technology. At its conclusion, audience members will be able to: 1. Describe key strengths and shortcomings of methodologies used to assess personal and community genetics values. 2. Identify areas of common concern voiced by African American and Latino focus groups. 3. Articulate major policy recommendations deriving from public discussion of genetics issues and values
Keywords: Genetics, Policy/Policy Development
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
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.