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Protecting Participants in Genomic Research: Understanding the “Web of Protections” Afforded by Federal and State Law

Researchers now commonly collect biospecimens for genomic analysis together with information from mobile devices and electronic health records. This rich combination of data creates new opportunities for understanding and addressing important health issues, but also intensifies challenges to privacy...

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Detalles Bibliográficos
Autores principales: Wolf, Leslie E., Hammack, Catherine M., Brown, Erin Fuse, Brelsford, Kathleen M., Beskow, Laura M.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: SAGE Publications 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7307001/
https://www.ncbi.nlm.nih.gov/pubmed/32342774
http://dx.doi.org/10.1177/1073110520917000
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author Wolf, Leslie E.
Hammack, Catherine M.
Brown, Erin Fuse
Brelsford, Kathleen M.
Beskow, Laura M.
author_facet Wolf, Leslie E.
Hammack, Catherine M.
Brown, Erin Fuse
Brelsford, Kathleen M.
Beskow, Laura M.
author_sort Wolf, Leslie E.
collection PubMed
description Researchers now commonly collect biospecimens for genomic analysis together with information from mobile devices and electronic health records. This rich combination of data creates new opportunities for understanding and addressing important health issues, but also intensifies challenges to privacy and confidentiality. Here, we elucidate the “web” of legal protections for precision medicine research by integrating findings from qualitative interviews with structured legal research and applying them to realistic research scenarios involving various privacy threats.
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spelling pubmed-73070012020-06-22 Protecting Participants in Genomic Research: Understanding the “Web of Protections” Afforded by Federal and State Law Wolf, Leslie E. Hammack, Catherine M. Brown, Erin Fuse Brelsford, Kathleen M. Beskow, Laura M. J Law Med Ethics Symposium Articles Researchers now commonly collect biospecimens for genomic analysis together with information from mobile devices and electronic health records. This rich combination of data creates new opportunities for understanding and addressing important health issues, but also intensifies challenges to privacy and confidentiality. Here, we elucidate the “web” of legal protections for precision medicine research by integrating findings from qualitative interviews with structured legal research and applying them to realistic research scenarios involving various privacy threats. SAGE Publications 2020-04-28 2020-03 /pmc/articles/PMC7307001/ /pubmed/32342774 http://dx.doi.org/10.1177/1073110520917000 Text en © 2020 American Society of Law, Medicine & Ethics https://www.creativecommons.org/licenses/by-nc/4.0/ This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License (https://www.creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access page (https://us.sagepub.com/en-us/nam/open-access-at-sage).
spellingShingle Symposium Articles
Wolf, Leslie E.
Hammack, Catherine M.
Brown, Erin Fuse
Brelsford, Kathleen M.
Beskow, Laura M.
Protecting Participants in Genomic Research: Understanding the “Web of Protections” Afforded by Federal and State Law
title Protecting Participants in Genomic Research: Understanding the “Web of Protections” Afforded by Federal and State Law
title_full Protecting Participants in Genomic Research: Understanding the “Web of Protections” Afforded by Federal and State Law
title_fullStr Protecting Participants in Genomic Research: Understanding the “Web of Protections” Afforded by Federal and State Law
title_full_unstemmed Protecting Participants in Genomic Research: Understanding the “Web of Protections” Afforded by Federal and State Law
title_short Protecting Participants in Genomic Research: Understanding the “Web of Protections” Afforded by Federal and State Law
title_sort protecting participants in genomic research: understanding the “web of protections” afforded by federal and state law
topic Symposium Articles
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7307001/
https://www.ncbi.nlm.nih.gov/pubmed/32342774
http://dx.doi.org/10.1177/1073110520917000
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