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

Genome Med 2017 09 22;9(1):84. Epub 2017 Sep 22.

Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Houston, TX, 77030, USA.

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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http://dx.doi.org/10.1186/s13073-017-0476-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC5610432PMC
September 2017
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