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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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Detalles Bibliográficos
Autores principales: Hiratsuka, Vanessa Y., Beans, Julie A., Blanchard, Jessica W., Reedy, Justin, Blacksher, Erika, Lund, Justin R., Spicer, Paul G.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7075569/
https://www.ncbi.nlm.nih.gov/pubmed/32176704
http://dx.doi.org/10.1371/journal.pone.0229540
Descripción
Sumario: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.