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University of Colorado Denver

Centers for American Indian and Alaska Native Health
 
 
 

NCAIANMHR

The Promises and Pitfalls of Native Genetic Research


PROJECT TITLE:
The Promises and Pitfalls of Native Genetic Research

FUNDING SOURCE: 
NIEHS

DATES OF FUNDING: 
2000-2003

PRINCIPAL INVESTIGATOR(S): 
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:

  1. to articulate the possibilities and problems that accompany emerging genetic knowledge about AI/AN people;
  2. 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
  3. to formulate guidelines for the conduct of genetic research and the delivery of genetic health services in AI/AN communities.

 

RESEARCH DESIGN:
  • 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.
  •  

    PARTICIPANTS:

    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.

     

    MEASURES:

    A survey instrument has been developed to explore the range of opinion on research attitudes.

     

    PUBLICATIONS:

    None currently

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