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There is almost no systematic, empirical research on the topic of how information about genetic risk information travels through families, what family and cultural characteristics might impede or promote its dissemination, and how individuals at genetic risk conceptualize these issues. The purpose of this project is to explore these issues using risk information about breast and ovarian cancer as a model.

The specific aims of this study are to: confirm and extend previous work on the prevalence and nature of data sharing and withholding in academic genetics and its subfields; investigate the factors associated with data sharing and withholding in academic genetics and its subfields; and investigate the effects of university and governmental policies on data sharing and withholding in academic genetics and its subfields.

This project addresses the ethical, legal, and social implications of Alzheimer's disease (AD) genetics from the critical perspective of a group at high risk for the disease: currently unaffected relatives in families with AD. The applicants--Mass General Hospital/Harvard Medical School and the University of Alabama--have been working together since 1990 as part of the NIMH Genetics Initiative to identify families with Alzheimer's disease for genetic linkage study.

The purpose of this project is to develop and test a CDROM on ethical aspects of genetic testing for practicing registered nurses and senior level professional nursing students. Comprised of modules on ethics, genetic testing, and case studies on breast cancer and Alzheimer disease, the CDROM will provide for individually paced, interactive learning. Content will be critiqued by members of professional nursing organizations who participate in genetic testing.

This project is a collaborative effort of faculty from the Mount Sinai School of Medicine in the Departments of Human Genetics, Medical Education, the Morchand Center for Clinical Competence, Internal Medicine, Pediatrics, and Obstetrics and Gynecology. It is designed to evaluate the effectiveness of the use of Standardized Patients (SP) in resident education about the appropriate uses and issues associated with genetic testing, and to provide residents with training in genetic history taking and pedigree analysis.

This project is an Information Conference on the Human Genome Project: The Challenges and Impact of Human Genome Research for Minority Communities. This two day conference is designed primarily for representatives of minority communities, including community leaders, representatives of minority organizations, educators, government officials, fraternal groups, religious organizations representatives, civic, social, business and professional organizations. It is open to the public.