Grant: Regional Partnership Program Fellowship

This project explores the meaning of genetic diagnosis to people from Newfoundland and Labrador. The history of isolation and patterns of early immigration and settlement in Newfoundland and Labrador contributes to a unique population with a number of genetic diseases. This makes Newfoundland interesting to both genetics researchers and social scientists. This research will explore how aspects of biology and the concept of health now shape our individual, social and political identities. The research will investigate how people who have some experience with a genetic disease, as individuals or in their families and communitites, consider the implications for health and well being, social stigma, privacy and medical needs. The project seeks to identify the problems people associate with genetic diagnosis, what they expect from healthcare service providers, and what government insitutions should do in order to maximize acess to information without jeopardizing privacy and confidentiality. The research will be based on interviews with people affected by or concerned with genetic disease in their community. The project also takes into account that medical technology can shape society. This project will contribute information that will be important for policy makers and health educators as well as health care providers. It will contribute to our knowledge of what people in Newfoundland understand about genetic disease, what information they need and how best to provide it. The information will also provide a useful model for understanding the impact of other medical technologies and biomedical research projects on concepts of personal and community identity.