Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2017 Jul;12(3):169-179.
doi: 10.1177/1556264617704542. Epub 2017 Apr 23.

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

Jessica W Blanchard  1 , Gloria Tallbull  1 , Chantelle Wolpert  2 , Jill Powell  3 , Morris W Foster  4 , Charmaine Royal  3
Affiliations

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

Jessica W Blanchard et al. J Empir Res Hum Res Ethics. 2017 Jul.

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.

PubMed Disclaimer

References

    1. The American Society of Human Genetics. Ancestry Testing Statement. 2008 Nov 13; Retrieved from http://www.ashg.org/pdf/ashgancestrytestingstatement_final.pdf.
    1. Bardill J. Native American DNA: Ethical, legal, and social implications of an evolving concept. Annual Review of Anthropology. 2014;43:155–166.
    1. Bates BR, Harris TM. The Tuskegee Study of Untreated Syphilis and public perceptions of biomedical research: a focus group study. Journal of the National Medical Association. 2004;96(8):1051. - PMC - PubMed
    1. Blanchard J. Inequitable partners in collaborative research: reflections on community-based participatory research. Applied Anthropologist. 2011;2(31):29–36.
    1. Bolnick DA, Fullwiley D, Duster T, Cooper RS, Fujimura JH, Kahn J, … TallBear K. The science and business of genetic ancestry testing. Science. 2007;318(5849):399–400. - PubMed

Publication types

LinkOut - more resources