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.

This project is focused on the ways in which two diagnostic technologies--screening mammography and genetic testing--emerged, diffused, interacted with medical and social thought and values, and provoked controversy. The central research questions are: What are the factors that have led to the dramatic shift in beliefs about, and practices surrounding, breast cancer risk over the past fifty years? What have been the consequences?

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 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 proposed project will determine the factors with which people distinguish genetic from non-genetic disease, and the factors that they bring to bear in interpreting genetic diseases or conditions. The project will identify the ways in which these factors might vary between the following three contrastive pairs:

- people who are members of racial or ethnic groups that historically have been subjected to stigmatization, versus those who are not;

- scientists who conduct this research, and the lay public who it may concern; and

The University of Iowa College of Nursing and the Midwest Nursing Research Society (MNRS) will hold a 2 1/2 day conference ' Midwest Genetic Nursing Research: Advancing Science Through Collaboration' to be held from Oct. 13-15, 2000, at the College of Nursing in Iowa City, IA. The specific goals of the 2 1/2 day conference are to:

- present state of the science information in genetic discoveries and the related ethical, legal, and social issues impacting human health and nursing practice,

This ethnographic study examines the social and ethical implications of the use of categories of race and ethnicity in human genome research.

To advance understanding of the ethical dimensions of genetic research for diverse populations this project will address questions that take into account concerns of the individual, scientific institutions, and the broader community. Informed consent provides the focus of the ethical exchange between investigators and study participants. This social interaction will serve as the context for exploring ethical issues associated with the implementation of collaborative international genetic research.

As the scientific study of genetic variation between human groups gains momentum around the world, traditional questions of research ethics are being transformed in ways that challenge our conventional wisdom about the responsible conduct of research. Challenges associated with obtaining informed consent may be heightened because of difficulties explaining genetic concepts cross-culturally. In some cases, language barriers may diminish effective communication even when literal translation is not a problem.

This proposal addresses the question posed in the RFA for the ELSI program 'Will continuing research in molecular biology and functional genomics affect how individuals and society view the relationship of humans to one another and to the rest of the living world?' Specifically, the purpose of this application is to address the impact of current and future knowledge of genetics and genomics on the scientific and cultural definition of race, an issue for the Human Genome Project (HGP).