The National Information Resource on Ethics & Human Genetics (NIREHG), in cooperation with the National Reference Center for Bioethics Literature (NRCBL, funded by a contract with the National Library of Medicine and other sources) and with the consultation of an Advisory Board of subject matter experts, proposes:
- To continue the identification, collection, and cataloging of materials on the ethical, legal, and social implications (ELSI) of genetic research;

This project will continue the activity of the National Information Resource on Ethics and Human Genetics at the Kennedy Institute of Ethics, Georgetown University. The research group will continue to gather, catalog, index, and disseminate information on the ethical, legal, and social issues raised by the human genome project and its applications in human genetics. The materials collected by the research group will be housed at the National Reference Center for Bioethics Literature.

This project will continue the activity of the National Information Resource on Ethics and Human Genetics at the Kennedy Institute of Ethics, Georgetown University. The research group will:

This project builds on an exploratory study of psychosocial and ethnocultural factors related to intentions to obtain genetic testing for heritable colon cancer, and a pilot study of genetic counseling for intermediate-risk colorectal cancer (CRC) family members.

The main goal of this proposal is to develop appropriate comprehensive counseling guidelines for predictive colon cancer gene testing by assessing perceptions and attitudes toward the gene tests, including their social and psychological determinants, and assessing the impact of the test on at-risk persons.

This renewal project, conducted by a consortium of three universities (University of Michigan, Michigan State University and Tuskegee University) will develop a process for engaging minority populations of diverse socioeconomic levels in the process of rational democratic deliberation on moral and political issues relating to genome research and its resulting technology, and will develop recommendations for laws, professional standards and institutional policies regarding the use and application of genome research and technology.

This project will explore the breadth of current efforts to structure public health practice to respond to advances in genetics, analyzing these efforts for their consistency with existing public health law and policy and for their responsiveness to the lessons of history. The roles of public health institutions in reproductive genetic testing, state-run newborn screening programs, and predictive genetic testing will receive particular emphasis.

This study will examine the significance accorded to disability in judgements about quality and value of human lives, focusing on two domains in which such judgments are of central importance prenatal testing by prospective parents, and the use of disability-adjusted life years (DALYs) to determine the cost-effectiveness of health care interventions. To address these issues, the investigators will convene an interdisciplinary working group of researchers with backgrounds in philosophy, law, genetics, counseling, public health, economics, and social science. The group will

The long term goal of this project is to improve patient understanding about breast cancer risk and genetic testing. This project will conduct a clinical trial to evaluate the effectiveness of a CD-ROM, called 'Counseling by Computer: Breast Cancer Risk and Genetic Testing', at educating women about breast cancer risk, and options and implications of genetic testing.