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.

The broad goal of the research proposal is to identify factors that either promote or inhibit the development, by scientists, of new genetic technologies relevant to health care and to consider the research policy implications of individual and organizational factors. The specific aim is to elicit the views of individual research scientists on appropriate transfer of genetic technologies into health care practice.

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 proposed research will study whether there should be any limits placed on life insurers' use of predictive genetic information in risk classification or medical underwriting. The research will focus on the following issues:

- the current state of the science on the use of predictive genetic information in mortality risk calculations;

- the statutory and case law addressing actuarial fairness in life insurance;

The Human Genome Project (HGP) is a source of hope and a cause for concern for people with disabilities and their families. Few researchers have solicited the input of the disability community about the HGP or reviewed possible responses to their concerns and expectations. In particular, little is known about the 'grassroots' disability perspectives and, within the grassroots perspective, the views of underrepresented subgroups including women, minorities, and low-income families.

The ethical, legal, and social issues arising from the use of DNA forensics have not been fully explored. This project aims to investigate the various positions on new and controversial issues surrounding DNA profiling and to educate policymakers so that they better understand privacy and civil liberty issues involved in the application of DNA technology to the criminal justice system.

This study entitled "Response of a Sample Population with the Deleterious HD allele" (RESPOND-HD) will examine ethical, legal, and social considerations that may affect the experience of persons following genetic testing for Huntington's disease (HD). HD is a genetic brain disease that typically begins in mid-life. Since predictive testing for HD was one of the first genetic tests available for later onset disorders, research in HD has traditionally helped define issues for ethical, legal and social aspects of genetic disorders.

Pharmacogenetic testing is considered one of the most promising clinical applications arising from genomics research, with the potential to reduce adverse drug responses and improve efficacy of drug treatment. Because pharmacogenetic tests address a specific question about drug therapy, they have generally been viewed as having fewer ethical and social implications than other types of genetic testing. Yet some policy concerns will need to be addressed before pharmacogenetic tests can be introduced appropriately into clinical practice.

The proposed project explores a new direction in our larger research on the use of human genetic variation studies in the search for biomedically related genetic markers. Broadly, the aim of the new add-on project and the original project is to understand how human genetic variation researchers operationalize the concept of "a human population." Together, these studies will provide empirical information that will help geneticists and bioethicists to understand whether there may be potential downstream social and biomedical consequences of different conceptualizations.

The recruitment of American Indians and Alaska Natives (AI/AN) to participate in research is complicated by a long and troubled history between researchers and Native populations of the United States regarding the collection of Native American remains, cultural artifacts, and access to and use of natural resources, as well as health research. This history has led to widespread distrust and reluctance to participate in research.