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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...

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Autores principales: Saulnier, Katie M., Bujold, David, Dyke, Stephanie O. M., Dupras, Charles, Beck, Stephan, Bourque, Guillaume, Joly, Yann
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Nature Publishing Group UK 2019
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.
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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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