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 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.
Deverka, PA; Majumder, MA; Villanueva, AG; Anderson, M; Bakker, AC; Bardill, J; Boerwinkle, E; Bubela, T; Evans, BJ; Garrison, NA; Gibbs, RA; Gentleman, R; Glazer, D; Goldstein, MM; Greely, H; Harris, C; Knoppers, BM; Koenig, BA; Kohane, IS; La Rosa, S; Mattison, J; O'Donnell, CJ; Rai, AK; Rehm, HL; Rodriguez, LL; Shelton, R; Simoncelli, T; Terry, SF; Watson, MS; Wilbanks, J; Cook-Deegan, R; McGuire, AL
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