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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...
Autores principales: | , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
SAGE Publications
2020
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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. |
format | Online Article Text |
id | pubmed-7307001 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2020 |
publisher | SAGE Publications |
record_format | MEDLINE/PubMed |
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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