학술논문
Creating a data resource: what will it take to build a medical information commons?
Document Type
article
Author
Patricia A. Deverka; Mary A. Majumder; Angela G. Villanueva; Margaret Anderson; Annette C. Bakker; Jessica Bardill; Eric Boerwinkle; Tania Bubela; Barbara J. Evans; Nanibaa’ A. Garrison; Richard A. Gibbs; Robert Gentleman; David Glazer; Melissa M. Goldstein; Hank Greely; Crane Harris; Bartha M. Knoppers; Barbara A. Koenig; Isaac S. Kohane; Salvatore La Rosa; John Mattison; Christopher J. O’Donnell; Arti K. Rai; Heidi L. Rehm; Laura L. Rodriguez; Robert Shelton; Tania Simoncelli; Sharon F. Terry; Michael S. Watson; John Wilbanks; Robert Cook-Deegan; Amy L. McGuire
Source
Genome Medicine, Vol 9, Iss 1, Pp 1-5 (2017)
Subject
Language
English
ISSN
1756-994X
Abstract
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.