Genes and other biological markers are rapidly being identified that can provide presymptomatic estimates of risk for the eventual development of late-onset diseases. There is widespread public interest in obtaining risk information, particularly as treatments are developed to slow or prevent the onset of degenerative diseases. Many of the recently discovered gene markers are not deterministic genes, but rather susceptibility genes that interact with other, as yet unidentified genes, and with factors such as age, gender, race, family history and environmental exposures.

This project's primary objective is to provide tools and resources for open and informed public discussion about behavioral genetics, and about the significant ethical and social issues raised by it. Tools in this context means concepts and distinctions that facilitate clear, careful, and meaningful conversation among professional and lay groups.

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 a collaborative effort of faculty from the Mount Sinai School of Medicine in the Departments of Human Genetics, Medical Education, Community and Preventive Medicine, and The Morchand Center for Clinical Competence.

This conference, Genetics and Society: Impact of New Technologies on Law, Medicine, and Policy, will bring together more than 800 physicians, lawyers, ethicists, scientists, clergy, students, consumers, and consumer advocates to explore the opportunities and challenges emerging from today's research. The conference, organized by the Whitehead Institute for Biomedical Research, in association with the American Society of Law, Medicine and Ethics (ASLME), will take place on May 10, 11, and 12, 2000.

This project will bring together an interdisciplinary working group of scholars to explore these questions. During a three year period, it will meet to develop the language, criteria, and conceptual framework for exploring issues related to genetic variation research and social identity. Specifically the project will address ways in which the information emerging from research into human genetic variation may affect three overlapping domains: concepts of identity and authenticity; concepts of identity and community; and concepts of identity, family, and kinship.

The overall aim of this ethnographic and longitudinal project is to assess how parents from different cultural backgrounds who have a child or who are at risk for having a child with a genetic disorder seek out, understand, and use knowledge (including information received during genetic counseling and evaluation) to interpret genetic disorders and their experiences, and to make decisions about reproduction, health, and services.

The aims of this study are to:

- compare newborn identification of biochemical genetic disorders by expanded screening with clinical identification in term of the interaction between the parents and the health care system and elements of health outcome for the child and family and;

- assess the impact of false positive identification in expanded newborn screening in terms of parental response and interactions with the health care system.

The purpose of the proposed project is to deepen empirical understanding of reproductive genetic services in rural areas, through a comparative case study of genetic counseling, testing, and related services among rural and urban residents of Kentucky. The study explicitly seeks to describe and analyze regional variation in experiences and uses of reproductive genetic services as linked to intersections of place, culture, and policy ('routes of access'). The study will address the following specific, inter-related aims: 1.