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Benefits and barriers in the design of harmonized access agreements for international data sharing
In the past decade, there has been a surge in the number of sensitive human genomic and health datasets available to researchers via Data Access Agreements (DAAs) and managed by Data Access Committees (DACs). As this form of sharing increases, so do the challenges of achieving a reasonable level of...
Autores principales: | , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Nature Publishing Group UK
2019
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6889499/ https://www.ncbi.nlm.nih.gov/pubmed/31792275 http://dx.doi.org/10.1038/s41597-019-0310-4 |
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author | Saulnier, Katie M. Bujold, David Dyke, Stephanie O. M. Dupras, Charles Beck, Stephan Bourque, Guillaume Joly, Yann |
author_facet | Saulnier, Katie M. Bujold, David Dyke, Stephanie O. M. Dupras, Charles Beck, Stephan Bourque, Guillaume Joly, Yann |
author_sort | Saulnier, Katie M. |
collection | PubMed |
description | In the past decade, there has been a surge in the number of sensitive human genomic and health datasets available to researchers via Data Access Agreements (DAAs) and managed by Data Access Committees (DACs). As this form of sharing increases, so do the challenges of achieving a reasonable level of data protection, particularly in the context of international data sharing. Here, we consider how excessive variation across DAAs can hinder these goals, and suggest a core set of clauses that could prove useful in future attempts to harmonize data governance. |
format | Online Article Text |
id | pubmed-6889499 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2019 |
publisher | Nature Publishing Group UK |
record_format | MEDLINE/PubMed |
spelling | pubmed-68894992019-12-06 Benefits and barriers in the design of harmonized access agreements for international data sharing Saulnier, Katie M. Bujold, David Dyke, Stephanie O. M. Dupras, Charles Beck, Stephan Bourque, Guillaume Joly, Yann Sci Data Comment In the past decade, there has been a surge in the number of sensitive human genomic and health datasets available to researchers via Data Access Agreements (DAAs) and managed by Data Access Committees (DACs). As this form of sharing increases, so do the challenges of achieving a reasonable level of data protection, particularly in the context of international data sharing. Here, we consider how excessive variation across DAAs can hinder these goals, and suggest a core set of clauses that could prove useful in future attempts to harmonize data governance. Nature Publishing Group UK 2019-12-02 /pmc/articles/PMC6889499/ /pubmed/31792275 http://dx.doi.org/10.1038/s41597-019-0310-4 Text en © The Author(s) 2019 Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as 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 images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/. |
spellingShingle | Comment Saulnier, Katie M. Bujold, David Dyke, Stephanie O. M. Dupras, Charles Beck, Stephan Bourque, Guillaume Joly, Yann Benefits and barriers in the design of harmonized access agreements for international data sharing |
title | Benefits and barriers in the design of harmonized access agreements for international data sharing |
title_full | Benefits and barriers in the design of harmonized access agreements for international data sharing |
title_fullStr | Benefits and barriers in the design of harmonized access agreements for international data sharing |
title_full_unstemmed | Benefits and barriers in the design of harmonized access agreements for international data sharing |
title_short | Benefits and barriers in the design of harmonized access agreements for international data sharing |
title_sort | benefits and barriers in the design of harmonized access agreements for international data sharing |
topic | Comment |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6889499/ https://www.ncbi.nlm.nih.gov/pubmed/31792275 http://dx.doi.org/10.1038/s41597-019-0310-4 |
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