Genome Medicine (Sep 2017)
Creating a data resource: what will it take to build a medical information commons?
- 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
Affiliations
- Patricia A. Deverka
- American Institutes for Research, Health Care Group
- Mary A. Majumder
- Center for Medical Ethics and Health Policy, Baylor College of Medicine
- Angela G. Villanueva
- Center for Medical Ethics and Health Policy, Baylor College of Medicine
- Margaret Anderson
- Deloitte, 1919 N Lynn
- Annette C. Bakker
- Children’s Tumor Foundation
- Jessica Bardill
- Department of English, Concordia University
- Eric Boerwinkle
- Human Genetics Center, School of Public Health, The University of Texas Health Science Center at Houston and Human Genome Sequencing Center, Baylor College of Medicine
- Tania Bubela
- Faculty of Health Sciences, Simon Fraser University
- Barbara J. Evans
- Law Center and Department of Electrical and Computer Engineering, University of Houston
- Nanibaa’ A. Garrison
- Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Research Institutes
- Richard A. Gibbs
- Human Genome Sequencing Center, Baylor College of Medicine
- Robert Gentleman
- 23andMe
- David Glazer
- Verily Life Sciences LLC
- Melissa M. Goldstein
- Milken Institute School of Public Health, The Georgetown Washington University
- Hank Greely
- Center for Law and the Biosciences, Stanford University
- Crane Harris
- Illumina, Inc., 5200 Research Pl
- Bartha M. Knoppers
- Centre of Genomics and Policy, McGill University
- Barbara A. Koenig
- Institute for Health and Aging, and Department of Anthropology, History, and Social Medicine, University of California San Francisco
- Isaac S. Kohane
- Department of Biomedical Informatics, Harvard Medical School
- Salvatore La Rosa
- Children’s Tumor Foundation
- John Mattison
- Kaiser Permanente, University of California San Diego and Singularity University
- Christopher J. O’Donnell
- Center for Population Genomics, Boston Veterans Administration Healthcare
- Arti K. Rai
- Duke University School of Law; Duke Innovation and Entrepreneurship Initiative
- Heidi L. Rehm
- Harvard Medical School, Brigham and Women’s Hospital and The Broad Institute of MIT and Harvard
- Laura L. Rodriguez
- Division of Policy, Communications, and Education, National Human Genome Research Institute 31 Center Drive
- Robert Shelton
- Private Access, Inc
- Tania Simoncelli
- Broad Institute of Harvard and MIT
- Sharon F. Terry
- Genetic Alliance
- Michael S. Watson
- American College of Medical Genetics and Genomics
- John Wilbanks
- Sage Bionetworks
- Robert Cook-Deegan
- School for the Future of Innovation in Society and Consortium for Science, Policy and Outcomes, Arizona State University, and Senior Fellow, FasterCures, a Center of the Milken Institute
- Amy L. McGuire
- Center for Medical Ethics and Health Policy, Baylor College of Medicine
- DOI
- https://doi.org/10.1186/s13073-017-0476-3
- Journal volume & issue
-
Vol. 9,
no. 1
pp. 1 – 5
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.
