Document Type
Article
Department
Office of the Provost
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.
Publication (Name of Journal)
Genome Medicine
DOI
10.1186/s13073-017-0476-3
Recommended Citation
Deverka, P. A.,
Majumder, M. A.,
Villanueva, A. G.,
Anderson, M.,
Bakker, A. C.,
Bardill, J.,
Boerwinkle, E.,
Bubela, T. M.,
Evans, B. J.,
Garrison, N. A.
(2017). Creating a data resource: What will it take to build a medical information commons?. Genome Medicine, 9(1), 84.
Available at:
https://ecommons.aku.edu/provost_office/744
Creative Commons License
This work is licensed under a Creative Commons Attribution 4.0 International License.
Comments
Pagination are not provided by the author/publisher. This work was published before Tania joined Aga Khan University.