The 131st Annual Meeting (November 15-19, 2003) of APHA

Abstract #64777

Ann Ueda, School of Public Health, Boston University, Boston AIDS Consortium, 140 Clarendon Street, Boston, MA 02116, 617-867-0144, aueda@bacboston.org

Population-based research is of great interest to genetic scientists and pharmaceutical companies, for the relative ease it provides in finding genetic causes, predispositions, and targeted medications for common diseases. However, certain populations or identifiable groups may have particular concerns, issues, and problems with such research being conducted on them. It is important to understand what these are, their origins, and how they may affect groups’ interest in participating in genetic research. The U.S. Indian Health Services has developed a human subjects research protections model designed for Native American tribes that wish to become involved in population-based genetic research. The model will be reviewed and then applied to two distinct groups that could be of interest for genetic researchers: African-Americans and gay men and women. The concerns of population-based genetic research for the two groups will be identified, and the adequacy of the Indian Health Services model to address these concerns will be discussed. Finally, a set of recommendations will be proposed that can help move community or group concerns to actual considerations that are afforded legal and ethical protections.

Learning Objectives:

• 3. Understand the importance of conducting genetic research in clearly identifiable human populations.
  6. Identify the potential concerns and problems that may result from population-based genetic research.
  9. Become familiar with the human subjects research protections model developed by the U.S. Indian Health Services to protect Native American tribes involved with genetic research.
  12. Apply the Indian Health Services model to African-American and gay/lesbian populations.
  15. Understand the strenghts and limitations of the Indian Health Services model for these specific populations.
  18. Identify ethical and legal considerations to ensure that concerns of groups or communities involved with population-based research are adequately understood and addressed by genetic researchers.

Keywords: Genetics, Research

Presenting author's disclosure statement:
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.