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

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

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;
genome medicine 2017 Vol. 9 pp. 84
202
deverka2017creatinggenome

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.

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