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Controlled Access under Review: Improving the Governance of Genomic Data Access

In parallel with massive genomic data production, data sharing practices have rapidly expanded over the last decade. To ensure authorized access to data, access review by data access committees (DACs) has been utilized as one potential solution. Here we discuss core elements to be integrated into th...

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Detalles Bibliográficos
Autores principales: Shabani, Mahsa, Dyke, Stephanie O. M., Joly, Yann, Borry, Pascal
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Public Library of Science 2015
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4697814/
https://www.ncbi.nlm.nih.gov/pubmed/26720729
http://dx.doi.org/10.1371/journal.pbio.1002339
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author Shabani, Mahsa
Dyke, Stephanie O. M.
Joly, Yann
Borry, Pascal
author_facet Shabani, Mahsa
Dyke, Stephanie O. M.
Joly, Yann
Borry, Pascal
author_sort Shabani, Mahsa
collection PubMed
description In parallel with massive genomic data production, data sharing practices have rapidly expanded over the last decade. To ensure authorized access to data, access review by data access committees (DACs) has been utilized as one potential solution. Here we discuss core elements to be integrated into the fabric of access review by both established and emerging DACs in order to foster fair, efficient, and responsible access to datasets. We particularly highlight the fact that the access review process could be adversely influenced by the potential conflicts of interest of data producers, particularly when they are directly involved in DACs management. Therefore, in structuring DACs and access procedures, possible data withholding by data producers should receive thorough attention.
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spelling pubmed-46978142016-01-13 Controlled Access under Review: Improving the Governance of Genomic Data Access Shabani, Mahsa Dyke, Stephanie O. M. Joly, Yann Borry, Pascal PLoS Biol Perspective In parallel with massive genomic data production, data sharing practices have rapidly expanded over the last decade. To ensure authorized access to data, access review by data access committees (DACs) has been utilized as one potential solution. Here we discuss core elements to be integrated into the fabric of access review by both established and emerging DACs in order to foster fair, efficient, and responsible access to datasets. We particularly highlight the fact that the access review process could be adversely influenced by the potential conflicts of interest of data producers, particularly when they are directly involved in DACs management. Therefore, in structuring DACs and access procedures, possible data withholding by data producers should receive thorough attention. Public Library of Science 2015-12-31 /pmc/articles/PMC4697814/ /pubmed/26720729 http://dx.doi.org/10.1371/journal.pbio.1002339 Text en © 2015 Shabani et al http://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are properly credited.
spellingShingle Perspective
Shabani, Mahsa
Dyke, Stephanie O. M.
Joly, Yann
Borry, Pascal
Controlled Access under Review: Improving the Governance of Genomic Data Access
title Controlled Access under Review: Improving the Governance of Genomic Data Access
title_full Controlled Access under Review: Improving the Governance of Genomic Data Access
title_fullStr Controlled Access under Review: Improving the Governance of Genomic Data Access
title_full_unstemmed Controlled Access under Review: Improving the Governance of Genomic Data Access
title_short Controlled Access under Review: Improving the Governance of Genomic Data Access
title_sort controlled access under review: improving the governance of genomic data access
topic Perspective
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4697814/
https://www.ncbi.nlm.nih.gov/pubmed/26720729
http://dx.doi.org/10.1371/journal.pbio.1002339
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