The Promises and Pitfalls of Native Genetic Research
DATES OF FUNDING:
Paul Spicer, PhD.
CENTER STAFF INVOLVED:
Marjorie Bezdek, Ceceila Big Crow, Dedra Buchwald, Candace Fleming, Jeffrey Henderson, Patricia Nez Henderson, Bonnie Holyrock, Crystal Loudhawk, Spero Manson, and Paul Spicer
SPECIFIC AIMS/RESEARCH GOALS:
This study has 3 specific aims:
- to articulate the possibilities and problems that accompany emerging genetic knowledge about AI/AN people;
- to consult members of diverse urban and rural AI/AN 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 AI/AN communities.
Conferences of key stakeholders in debates about genetic research and health services for Indian and Native people;
Discussions of these issues in tribal and urban Native communities; and
An inventory of existing research procedures and policies governing AI/AN genetic research.
A survey on attitudes toward research among patients and staff at an Indian clinic and among AI/AN teachers and students.
National leaders in debates about genetic health services and research with Indian and Native people and community members from a wide range of Indian and Native communities.
A survey instrument has been developed to explore the range of opinion on research attitudes.