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

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

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

Note: Order does not necessarily reflect citation order of authors.

Citation: Deverka, P. A., M. A. Majumder, A. G. Villanueva, M. Anderson, A. C. Bakker, J. Bardill, E. Boerwinkle, et al. 2017. “Creating a data resource: what will it take to build a medical information commons?” Genome Medicine 9 (1): 84. doi:10.1186/s13073-017-0476-3. http://dx.doi.org/10.1186/s13073-017-0476-3.
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Abstract: 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.
Published Version: doi:10.1186/s13073-017-0476-3
Other Sources: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5610432/pdf/
Terms of Use: This article is made available under the terms and conditions applicable to Other Posted Material, as set forth at http://nrs.harvard.edu/urn-3:HUL.InstRepos:dash.current.terms-of-use#LAA
Citable link to this page: http://nrs.harvard.edu/urn-3:HUL.InstRepos:34492397
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