학술논문
Creating a data resource: what will it take to build a medical information commons?
Document Type
Article
Author
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
Source
Subject
*MEDICAL information storage & retrieval systems
*MEDICAL informatics
*MEDICAL partnership
*INFORMATION resources management
*DATA analysis
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Language
ISSN
1756-994X
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. [ABSTRACT FROM AUTHOR]