The Promises and Pitfalls of Native Genetic Research

The goal of this project is to explore the range of ethical, legal, and social implications of genetic research and health services with Indian and Native peoples. These issues have proven to be intensely controversial in some quarters and the intent in this proposal is to explore areas of common ground and possibility for compromise between Indian and Native communities and genetic researchers. Beginning with a conference of national experts and representatives from diverse Indian and Native communities to set the agenda for this research, the project then moves to community consultations in five Indian and Native communities (three rural and two urban). This community work will then be followed by a survey of the Institutional Review Boards (IRBs) that review research in Indian and Native communities, including tribal and Indian Health Service bodies. The project has three specific aims:
- to articulate the possibilities and problems that accompany emerging genetic knowledge about Indian and native people;
- to consult members of diverse urban and rural Indian and Native communities about the ethical, legal, and social implications of possible developments in genetic research and health services, and
- to formulate guidelines for the conduct of genetic research and the delivery of genetic health services in Indian and Native communities.