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APPLaUD: access for patients and participants to individual level uninterpreted genomic data
BACKGROUND: There is a growing support for the stance that patients and research participants should have better and easier access to their raw (uninterpreted) genomic sequence data in both clinical and research contexts. MAIN BODY: We review legal frameworks and literature on the benefits, risks, a...
Autores principales: | , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
BioMed Central
2018
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5816450/ https://www.ncbi.nlm.nih.gov/pubmed/29454384 http://dx.doi.org/10.1186/s40246-018-0139-5 |
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author | Thorogood, Adrian Bobe, Jason Prainsack, Barbara Middleton, Anna Scott, Erick Nelson, Sarah Corpas, Manuel Bonhomme, Natasha Rodriguez, Laura Lyman Murtagh, Madeleine Kleiderman, Erika |
author_facet | Thorogood, Adrian Bobe, Jason Prainsack, Barbara Middleton, Anna Scott, Erick Nelson, Sarah Corpas, Manuel Bonhomme, Natasha Rodriguez, Laura Lyman Murtagh, Madeleine Kleiderman, Erika |
author_sort | Thorogood, Adrian |
collection | PubMed |
description | BACKGROUND: There is a growing support for the stance that patients and research participants should have better and easier access to their raw (uninterpreted) genomic sequence data in both clinical and research contexts. MAIN BODY: We review legal frameworks and literature on the benefits, risks, and practical barriers of providing individuals access to their data. We also survey genomic sequencing initiatives that provide or plan to provide individual access. Many patients and research participants expect to be able to access their health and genomic data. Individuals have a legal right to access their genomic data in some countries and contexts. Moreover, increasing numbers of participatory research projects, direct-to-consumer genetic testing companies, and now major national sequencing initiatives grant individuals access to their genomic sequence data upon request. CONCLUSION: Drawing on current practice and regulatory analysis, we outline legal, ethical, and practical guidance for genomic sequencing initiatives seeking to offer interested patients and participants access to their raw genomic data. |
format | Online Article Text |
id | pubmed-5816450 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2018 |
publisher | BioMed Central |
record_format | MEDLINE/PubMed |
spelling | pubmed-58164502018-02-21 APPLaUD: access for patients and participants to individual level uninterpreted genomic data Thorogood, Adrian Bobe, Jason Prainsack, Barbara Middleton, Anna Scott, Erick Nelson, Sarah Corpas, Manuel Bonhomme, Natasha Rodriguez, Laura Lyman Murtagh, Madeleine Kleiderman, Erika Hum Genomics Review BACKGROUND: There is a growing support for the stance that patients and research participants should have better and easier access to their raw (uninterpreted) genomic sequence data in both clinical and research contexts. MAIN BODY: We review legal frameworks and literature on the benefits, risks, and practical barriers of providing individuals access to their data. We also survey genomic sequencing initiatives that provide or plan to provide individual access. Many patients and research participants expect to be able to access their health and genomic data. Individuals have a legal right to access their genomic data in some countries and contexts. Moreover, increasing numbers of participatory research projects, direct-to-consumer genetic testing companies, and now major national sequencing initiatives grant individuals access to their genomic sequence data upon request. CONCLUSION: Drawing on current practice and regulatory analysis, we outline legal, ethical, and practical guidance for genomic sequencing initiatives seeking to offer interested patients and participants access to their raw genomic data. BioMed Central 2018-02-17 /pmc/articles/PMC5816450/ /pubmed/29454384 http://dx.doi.org/10.1186/s40246-018-0139-5 Text en © The Author(s). 2018 Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver (http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated. |
spellingShingle | Review Thorogood, Adrian Bobe, Jason Prainsack, Barbara Middleton, Anna Scott, Erick Nelson, Sarah Corpas, Manuel Bonhomme, Natasha Rodriguez, Laura Lyman Murtagh, Madeleine Kleiderman, Erika APPLaUD: access for patients and participants to individual level uninterpreted genomic data |
title | APPLaUD: access for patients and participants to individual level uninterpreted genomic data |
title_full | APPLaUD: access for patients and participants to individual level uninterpreted genomic data |
title_fullStr | APPLaUD: access for patients and participants to individual level uninterpreted genomic data |
title_full_unstemmed | APPLaUD: access for patients and participants to individual level uninterpreted genomic data |
title_short | APPLaUD: access for patients and participants to individual level uninterpreted genomic data |
title_sort | applaud: access for patients and participants to individual level uninterpreted genomic data |
topic | Review |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5816450/ https://www.ncbi.nlm.nih.gov/pubmed/29454384 http://dx.doi.org/10.1186/s40246-018-0139-5 |
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