Patients with serious disease who are potential research subjects are routinely described as "vulnerable"and as disproportionately anticipating direct benefit from participation in early-phase trials. In our 1999-2003 ELSI project, "The Social Construction of Benefit in Gene Transfer Research", we explored how benefit in gene transfer research (GTR) is discussed and understood, and whether and how the "therapeutic misconception" exists in GTR.

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.

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.

The overall objective of the proposed research is to study the ethical, legal, and social implications of drug responsive genetic variations, especially where significant differences have been found based upon race, ethnicity, and gender. The research will focus on four elements:

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.

In this study, the Education Development Center, Inc., in collaboration with the International Association of Cystic Fibrosis Adults (IACFA), Temple University, St.

The University of Minnesota Center for Bioethics and the University's Joint Degree Program in Law, Health &the Life Sciences will complete a comprehensive investigation of the ethical, legal, and policy issues in the use of genetic information in private and public disability insurance and to recommend policies based on our findings. To achieve the goals for this project, the investigators will convene an interdisciplinary working group comprised of some of the best U.S.

This project will use case studies and a survey, combining qualitative and quantitative approaches, to describe and analyze the effects of a particular class of patents (those that claim DNA sequences for use as a genetic test). The investigators will examine the effects on 1) provision of DNA-based genetic testing services, and 2) research and development of other genetic tests or therapies based on disease-gene associations at academic and commercial institutions.

Multiple elements contribute to the successful translation of genetic advances into improved health outcomes. This project will address these elements through analysis of a series of genetic testing case examples.