dc.contributor.author | Deverka, Patricia A. | en_US |
dc.contributor.author | Majumder, Mary A. | en_US |
dc.contributor.author | Villanueva, Angela G. | en_US |
dc.contributor.author | Anderson, Margaret | en_US |
dc.contributor.author | Bakker, Annette C. | en_US |
dc.contributor.author | Bardill, Jessica | en_US |
dc.contributor.author | Boerwinkle, Eric | en_US |
dc.contributor.author | Bubela, Tania | en_US |
dc.contributor.author | Evans, Barbara J. | en_US |
dc.contributor.author | Garrison, Nanibaa’ A. | en_US |
dc.contributor.author | Gibbs, Richard A. | en_US |
dc.contributor.author | Gentleman, Robert | en_US |
dc.contributor.author | Glazer, David | en_US |
dc.contributor.author | Goldstein, Melissa M. | en_US |
dc.contributor.author | Greely, Hank | en_US |
dc.contributor.author | Harris, Crane | en_US |
dc.contributor.author | Knoppers, Bartha M. | en_US |
dc.contributor.author | Koenig, Barbara A. | en_US |
dc.contributor.author | Kohane, Isaac S. | en_US |
dc.contributor.author | La Rosa, Salvatore | en_US |
dc.contributor.author | Mattison, John | en_US |
dc.contributor.author | O’Donnell, Christopher J. | en_US |
dc.contributor.author | Rai, Arti K. | en_US |
dc.contributor.author | Rehm, Heidi L. | en_US |
dc.contributor.author | Rodriguez, Laura L. | en_US |
dc.contributor.author | Shelton, Robert | en_US |
dc.contributor.author | Simoncelli, Tania | en_US |
dc.contributor.author | Terry, Sharon F. | en_US |
dc.contributor.author | Watson, Michael S. | en_US |
dc.contributor.author | Wilbanks, John | en_US |
dc.contributor.author | Cook-Deegan, Robert | en_US |
dc.contributor.author | McGuire, Amy L. | en_US |
dc.date.accessioned | 2017-12-06T05:55:08Z | |
dc.date.issued | 2017 | en_US |
dc.identifier.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. | en |
dc.identifier.issn | | en |
dc.identifier.uri | http://nrs.harvard.edu/urn-3:HUL.InstRepos:34492397 | |
dc.description.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. | en |
dc.language.iso | en_US | en |
dc.publisher | BioMed Central | en |
dc.relation.isversionof | doi:10.1186/s13073-017-0476-3 | en |
dc.relation.hasversion | http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5610432/pdf/ | en |
dash.license | LAA | en_US |
dc.title | Creating a data resource: what will it take to build a medical information commons? | en |
dc.type | Journal Article | en_US |
dc.description.version | Version of Record | en |
dc.relation.journal | Genome Medicine | en |
dash.depositing.author | Kohane, Isaac S. | en_US |
dc.date.available | 2017-12-06T05:55:08Z | |
dc.identifier.doi | 10.1186/s13073-017-0476-3 | * |
dash.authorsordered | false | |
dash.contributor.affiliated | Kohane, Isaac | |
dash.contributor.affiliated | Rehm, Heidi | |