Journal
GENOME MEDICINE
Volume 9, Issue -, Pages -Publisher
BIOMED CENTRAL LTD
DOI: 10.1186/s13073-017-0476-3
Keywords
-
Categories
Funding
- National Institutes of Health, National Human Genome Research Institute [R01 HG008918]
- Robert Wood Johnson Foundation
- [K01 HG008818]
- [P20 HG007243]
- [U01 HG006507]
- [U01 HG007307-02S2]
- [U54 HG007963]
- [CC2-GA-2000-52]
- [U01 HG006500]
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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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