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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
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author Hiratsuka, Vanessa Y.
Beans, Julie A.
Blanchard, Jessica W.
Reedy, Justin
Blacksher, Erika
Lund, Justin R.
Spicer, Paul G.
author_facet Hiratsuka, Vanessa Y.
Beans, Julie A.
Blanchard, Jessica W.
Reedy, Justin
Blacksher, Erika
Lund, Justin R.
Spicer, Paul G.
author_sort Hiratsuka, Vanessa Y.
collection PubMed
description 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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spelling pubmed-70755692020-03-23 An Alaska Native community’s views on genetic research, testing, and return of results: Results from a public deliberation Hiratsuka, Vanessa Y. Beans, Julie A. Blanchard, Jessica W. Reedy, Justin Blacksher, Erika Lund, Justin R. Spicer, Paul G. PLoS One Research Article 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. Public Library of Science 2020-03-16 /pmc/articles/PMC7075569/ /pubmed/32176704 http://dx.doi.org/10.1371/journal.pone.0229540 Text en © 2020 Hiratsuka et al http://creativecommons.org/licenses/by/4.0/ This is an open access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/) , which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.
spellingShingle Research Article
Hiratsuka, Vanessa Y.
Beans, Julie A.
Blanchard, Jessica W.
Reedy, Justin
Blacksher, Erika
Lund, Justin R.
Spicer, Paul G.
An Alaska Native community’s views on genetic research, testing, and return of results: Results from a public deliberation
title An Alaska Native community’s views on genetic research, testing, and return of results: Results from a public deliberation
title_full An Alaska Native community’s views on genetic research, testing, and return of results: Results from a public deliberation
title_fullStr An Alaska Native community’s views on genetic research, testing, and return of results: Results from a public deliberation
title_full_unstemmed An Alaska Native community’s views on genetic research, testing, and return of results: Results from a public deliberation
title_short An Alaska Native community’s views on genetic research, testing, and return of results: Results from a public deliberation
title_sort alaska native community’s views on genetic research, testing, and return of results: results from a public deliberation
topic Research Article
url 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
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