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- Title
Creating a data resource: what will it take to build a medical information commons?
- Authors
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
- 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.
- Subjects
MEDICAL information storage &; retrieval systems; MEDICAL informatics; MEDICAL partnership; INFORMATION resources management; DATA analysis
- Publication
Genome Medicine, 2017, Vol 9, p1
- ISSN
1756-994X
- Publication type
Article
- DOI
10.1186/s13073-017-0476-3