In:
Journal of Empirical Research on Human Research Ethics, SAGE Publications, Vol. 12, No. 3 ( 2017-07), p. 169-179
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.
Type of Medium:
Online Resource
ISSN:
1556-2646
,
1556-2654
DOI:
10.1177/1556264617704542
Language:
English
Publisher:
SAGE Publications
Publication Date:
2017
detail.hit.zdb_id:
2263068-5
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