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

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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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Deverka, P. A., Majumder, M. A., Villanueva, A. G., Anderson, M., Bakker, A. C., Bardill, J., … McGuire, A. L. (2017, September 22). Creating a data resource: What will it take to build a medical information commons? Genome Medicine. BioMed Central Ltd. https://doi.org/10.1186/s13073-017-0476-3

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