Barriers and Strategies Related to Qualitative Research on Genetic Ancestry Testing in Indigenous Communities

J Empir Res Hum Res Ethics. 2017 Jul;12(3):169-179. doi: 10.1177/1556264617704542. Epub 2017 Apr 23.

Abstract

Conducting genetics-related research with populations that have historically experienced considerable harm and little benefit from genetics research poses unique challenges for understanding community-based perceptions of new genetic technologies. This article identifies challenges and strategies for collecting qualitative data on the perceptions of direct-to-consumer (DTC) Genetic Ancestry tests (GAT) among diverse Indigenous communities. Based on a 3-year project related to perceptions, attitudes, and values associated with genetic ancestry testing among diverse Indigenous communities in Oklahoma, the engagement process revealed specific opportunities to improve the process of qualitative data collection related to GAT, and more broadly, to conduct genetics-related research with Indigenous communities in culturally and methodologically appropriate ways. Priority areas include issues related to participant recruitment and tribal advisory boards, challenges of self-identification as a recruitment mechanism, and the necessity of including Indigenous researchers in all aspects of the research process.

Keywords: DNA; Indigenous/aboriginal/native populations; ancestry; bioethics; community-based; ethnographic methods; genetic research; qualitative methods; research ethics; tribal.

Publication types

  • Research Support, N.I.H., Extramural

MeSH terms

  • Advisory Committees
  • Attitude to Health*
  • Community-Based Participatory Research*
  • Cultural Competency*
  • Culture
  • Female
  • Genetic Research*
  • Genetic Testing*
  • Humans
  • Indians, North American*
  • Male
  • Oklahoma
  • Qualitative Research
  • Research Personnel
  • Residence Characteristics*
  • Social Values