Work

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

Year: 2017

Type: article

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.

Source: Journal of Empirical Research on Human Research Ethics

DOI: 10.1177/1556264617704542

Authors: Jessica W. Blanchard, Gloria Tallbull, Chantelle Wolpert, Jill Powell, Morris W. Foster, Charmaine Royal

Institutions: University of Oklahoma, Emory and Henry College, Duke University, Old Dominion University

Language: English

Topic: Race, Genetics, and Society

Subfield: Genetics

Field: Biochemistry, Genetics and Molecular Biology

Domain: Life Sciences

SDG: Reduced inequalities

Open Access status: green

Funders: University of Oklahoma, National Institutes of Health, National Human Genome Research Institute, National Institute on Minority Health and Health Disparities