COMMUNITY GENETICS AND ETHICS PROJECTS

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DESCRIPTION (Applicant's Abstract): The goal of the Community Genetics and Ethics Project (CGEP) is to enhance community-based participation in consideration of the ethical, legal and social implications (ELSI) of the Human Genome Project and the "new genetics." CGEP tests the hypotheses that: a) a community-based collaboration will involve a wide range of a rural region's population in discussion of ELSI issues; and b) such discussion will affect participants' knowledge of and attitudes toward these issues. The aims of CGEP are: to inform a large number of individuals from a broad array of backgrounds about scientific aspects of the new genetics; to raise awareness within its region of how the new genetics and its applications may affect people's lives; to foster interactive community dialogue about ELSI issues; to encourage widespread participation in societal decisions about use of the new genetics; to raise awareness among professionals of how the new genetics and ELSI issues may play a role in their work and in the lives of those their work touches; to create ongoing regional community-based networks for use of individuals and institutions in dealing with ELSI issues; and to create a nationally replicable model for meaningful, community-based discussion of ELSI issues. To achieve these aims, CGEP will hold ten Retreats (at least 300 total participants), Discussion Group (at least 3200 total participants ) and ten Community Forums (at least 750 total participants), each involving individuals from varied backgrounds. CGEP will also: compile and circulate a community resource directory of individuals and institutions; publish a newsletter, with contributions from CGEP participants, that reaches over 1,000 readers in the region; establish a site on the World Wide Web that includes the CGEP newsletter, listings of upcoming local events of interest, an updated annotated bibliography in genetics and ethics, and links to appropriate web sites; prepare and circulate to communities, political leaders, policy boards and other interested parties a final report including information regarding participation, evaluation and outcome of CGEP programs; make its activities known nationally, through formal presentations and informal networking to colleagues in genetics, ethics, the law, patient advocacy groups and community-based discussion groups; and create assessment tools, a compendium of relevant materials, and a manual describing and evaluating project component, for use by others considering similar programs.