CORE--GENESIS/ELSI

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Research and education in the ethical, legal, and social issues in the application of human genetic technology is a national priority. The Utah Center for Human Genome Research has conducted an ELSI program, titled Genetic Science in Society (GENESIS) since 1991. This proposal will continue and expand this activity with the creation of a GENESIS/ELSI Core for the Utah Human Genome Center. The Core will conduct five activities that will be integrated with other key activities of the Center. These activities are: (1) Guidelines for Genetic Research in Families will be prepared for use by IRB's, investigators and research subjects on the ethical, legal, and social issues that arise in genetics research with families. A multidisciplinary faculty with experience in ELSI issues and human genetic research will develop the guidelines in consultation with research scientists and lay individuals in families with hereditary conditions. The guidelines will be published in a peer reviewed journal. (2) A Fellowship Program will be developed for two fellows per year. Fellows will be recruited from a broad range of disciplines relevant to ELSI issues. Fellows will have a variety of responsibilities and opportunities for research and teaching. (3) A University Seminar Series will continue our intramural program of multidisciplinary seminars with leading national and international scholars focusing on the applications of contemporary genetic research. (4) An Ethics Forum will continue to provide an opportunity for the discussion of contemporary ELSI issues by the young scientists involved in genetic research. (5) Public Education in the ethical, legal, and social issues in human genetics will be conducted. It is proposed that II faculty members will receive partial funding through the GENESIS Core. The Utah ELSI core will be a strong, long term program of research and education on ELSI issues that will provide valuable support for investigators and subjects involved in human genetic research.