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Creating a data resource: what will it take to build a medical information commons?

National and international public–private partnerships, consortia, and government initiatives are underway to collect and share genomic, personal, and healthcare data on a massive scale. Ideally, these efforts will contribute to the creation of a medical information commons (MIC), a comprehensive da...

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Autores principales: Deverka, Patricia A., Majumder, Mary A., Villanueva, Angela G., Anderson, Margaret, Bakker, Annette C., Bardill, Jessica, Boerwinkle, Eric, Bubela, Tania, Evans, Barbara J., Garrison, Nanibaa’ A., Gibbs, Richard A., Gentleman, Robert, Glazer, David, Goldstein, Melissa M., Greely, Hank, Harris, Crane, Knoppers, Bartha M., Koenig, Barbara A., Kohane, Isaac S., La Rosa, Salvatore, Mattison, John, O’Donnell, Christopher J., Rai, Arti K., Rehm, Heidi L., Rodriguez, Laura L., Shelton, Robert, Simoncelli, Tania, Terry, Sharon F., Watson, Michael S., Wilbanks, John, Cook-Deegan, Robert, McGuire, Amy L.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: BioMed Central 2017
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5610432/
https://www.ncbi.nlm.nih.gov/pubmed/28938910
http://dx.doi.org/10.1186/s13073-017-0476-3
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author Deverka, Patricia A.
Majumder, Mary A.
Villanueva, Angela G.
Anderson, Margaret
Bakker, Annette C.
Bardill, Jessica
Boerwinkle, Eric
Bubela, Tania
Evans, Barbara J.
Garrison, Nanibaa’ A.
Gibbs, Richard A.
Gentleman, Robert
Glazer, David
Goldstein, Melissa M.
Greely, Hank
Harris, Crane
Knoppers, Bartha M.
Koenig, Barbara A.
Kohane, Isaac S.
La Rosa, Salvatore
Mattison, John
O’Donnell, Christopher J.
Rai, Arti K.
Rehm, Heidi L.
Rodriguez, Laura L.
Shelton, Robert
Simoncelli, Tania
Terry, Sharon F.
Watson, Michael S.
Wilbanks, John
Cook-Deegan, Robert
McGuire, Amy L.
author_facet Deverka, Patricia A.
Majumder, Mary A.
Villanueva, Angela G.
Anderson, Margaret
Bakker, Annette C.
Bardill, Jessica
Boerwinkle, Eric
Bubela, Tania
Evans, Barbara J.
Garrison, Nanibaa’ A.
Gibbs, Richard A.
Gentleman, Robert
Glazer, David
Goldstein, Melissa M.
Greely, Hank
Harris, Crane
Knoppers, Bartha M.
Koenig, Barbara A.
Kohane, Isaac S.
La Rosa, Salvatore
Mattison, John
O’Donnell, Christopher J.
Rai, Arti K.
Rehm, Heidi L.
Rodriguez, Laura L.
Shelton, Robert
Simoncelli, Tania
Terry, Sharon F.
Watson, Michael S.
Wilbanks, John
Cook-Deegan, Robert
McGuire, Amy L.
author_sort Deverka, Patricia A.
collection PubMed
description National and international public–private partnerships, consortia, and government initiatives are underway to collect and share genomic, personal, and healthcare data on a massive scale. Ideally, these efforts will contribute to the creation of a medical information commons (MIC), a comprehensive data resource that is widely available for both research and clinical uses. Stakeholder participation is essential in clarifying goals, deepening understanding of areas of complexity, and addressing long-standing policy concerns such as privacy and security and data ownership. This article describes eight core principles proposed by a diverse group of expert stakeholders to guide the formation of a successful, sustainable MIC. These principles promote formation of an ethically sound, inclusive, participant-centric MIC and provide a framework for advancing the policy response to data-sharing opportunities and challenges.
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spelling pubmed-56104322017-10-10 Creating a data resource: what will it take to build a medical information commons? Deverka, Patricia A. Majumder, Mary A. Villanueva, Angela G. Anderson, Margaret Bakker, Annette C. Bardill, Jessica Boerwinkle, Eric Bubela, Tania Evans, Barbara J. Garrison, Nanibaa’ A. Gibbs, Richard A. Gentleman, Robert Glazer, David Goldstein, Melissa M. Greely, Hank Harris, Crane Knoppers, Bartha M. Koenig, Barbara A. Kohane, Isaac S. La Rosa, Salvatore Mattison, John O’Donnell, Christopher J. Rai, Arti K. Rehm, Heidi L. Rodriguez, Laura L. Shelton, Robert Simoncelli, Tania Terry, Sharon F. Watson, Michael S. Wilbanks, John Cook-Deegan, Robert McGuire, Amy L. Genome Med Correspondence National and international public–private partnerships, consortia, and government initiatives are underway to collect and share genomic, personal, and healthcare data on a massive scale. Ideally, these efforts will contribute to the creation of a medical information commons (MIC), a comprehensive data resource that is widely available for both research and clinical uses. Stakeholder participation is essential in clarifying goals, deepening understanding of areas of complexity, and addressing long-standing policy concerns such as privacy and security and data ownership. This article describes eight core principles proposed by a diverse group of expert stakeholders to guide the formation of a successful, sustainable MIC. These principles promote formation of an ethically sound, inclusive, participant-centric MIC and provide a framework for advancing the policy response to data-sharing opportunities and challenges. BioMed Central 2017-09-22 /pmc/articles/PMC5610432/ /pubmed/28938910 http://dx.doi.org/10.1186/s13073-017-0476-3 Text en © The Author(s). 2017 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 Correspondence
Deverka, Patricia A.
Majumder, Mary A.
Villanueva, Angela G.
Anderson, Margaret
Bakker, Annette C.
Bardill, Jessica
Boerwinkle, Eric
Bubela, Tania
Evans, Barbara J.
Garrison, Nanibaa’ A.
Gibbs, Richard A.
Gentleman, Robert
Glazer, David
Goldstein, Melissa M.
Greely, Hank
Harris, Crane
Knoppers, Bartha M.
Koenig, Barbara A.
Kohane, Isaac S.
La Rosa, Salvatore
Mattison, John
O’Donnell, Christopher J.
Rai, Arti K.
Rehm, Heidi L.
Rodriguez, Laura L.
Shelton, Robert
Simoncelli, Tania
Terry, Sharon F.
Watson, Michael S.
Wilbanks, John
Cook-Deegan, Robert
McGuire, Amy L.
Creating a data resource: what will it take to build a medical information commons?
title Creating a data resource: what will it take to build a medical information commons?
title_full Creating a data resource: what will it take to build a medical information commons?
title_fullStr Creating a data resource: what will it take to build a medical information commons?
title_full_unstemmed Creating a data resource: what will it take to build a medical information commons?
title_short Creating a data resource: what will it take to build a medical information commons?
title_sort creating a data resource: what will it take to build a medical information commons?
topic Correspondence
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5610432/
https://www.ncbi.nlm.nih.gov/pubmed/28938910
http://dx.doi.org/10.1186/s13073-017-0476-3
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