An Alaska Native community’s views on genetic research, testing, and return of results: Results from a public deliberation

As genetic testing technology advances, genetic testing will move into standard practice in the primary care setting. Genetic research, testing, and return of results are complex topics that require input from Alaska Native and American Indian (ANAI) communities as policies are developed for impleme...

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Published inPloS one Vol. 15; no. 3; p. e0229540
Main Authors Hiratsuka, Vanessa Y., Beans, Julie A., Blanchard, Jessica W., Reedy, Justin, Blacksher, Erika, Lund, Justin R., Spicer, Paul G.
Format Journal Article
LanguageEnglish
Published United States Public Library of Science 16.03.2020
Public Library of Science (PLoS)
Subjects
Adult
Alaska - ethnology
Alaska Natives - psychology
Bioethics
Biology and Life Sciences
Boards of directors
Citizen participation
Community
Female
Genetic research
Genetic Research - ethics
Genetic screening
Genetic Testing - ethics
Genetics
Health care
Health care policy
Health Knowledge, Attitudes, Practice - ethnology
Humans
Indigenous peoples
Leadership
Male
Medical research
Medicine and Health Sciences
Primary care
Research methodology
Researchers
Science Policy
Setting (Literature)
Studies
Technology
Alaska
India
United States > US
Oklahoma
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Summary:As genetic testing technology advances, genetic testing will move into standard practice in the primary care setting. Genetic research, testing, and return of results are complex topics that require input from Alaska Native and American Indian (ANAI) communities as policies are developed for implementation. This study employed a day and half long public deliberation with ANAI primary care patients to elicit value-laden views of genetic research, testing, and return of results. Participants emphasized the need for a balance between the potential for genetics research, testing, and return of results to empower individuals and improve health with the potential to expose individuals and communities to privacy breaches, discrimination, and emotional harms. Public deliberation was well received by this group of participants and elicited rich discussion on the complex topic of genetic research, testing, and return of results.
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Competing Interests: The authors have declared that no competing interests exist.
ISSN:1932-6203
1932-6203
DOI:10.1371/journal.pone.0229540