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

Autor: Deverka PA; American Institutes for Research, Health Care Group, 100 Europa Drive, Suite 315, Chapel Hill, NC, 27517, USA., Majumder MA; Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Houston, TX, 77030, USA., Villanueva AG; Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Houston, TX, 77030, USA., Anderson M; Deloitte, 1919 N Lynn, Arlington, VA, 22209, USA., Bakker AC; Children's Tumor Foundation, 120 Wall Street, 16th Floor, New York, NY, 10005, USA., Bardill J; Department of English, Concordia University, 1455 Boulevard de Maisonneuve O, Montreal, QC, H3G 1M8, Canada., Boerwinkle E; 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, One Baylor Plaza, Houston, TX, 77030, USA., Bubela T; Faculty of Health Sciences, Simon Fraser University, 8888 University Drive, Burnaby, BC, V5A 1S6, Canada., Evans BJ; Law Center and Department of Electrical and Computer Engineering, University of Houston, 4604 Calhoun Road, Houston, TX, 77004, USA., Garrison NA; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institutes, 1900 Ninth Avenue, Room 677, Seattle, WA, 98101, USA., Gibbs RA; Human Genome Sequencing Center, Baylor College of Medicine, One Baylor Plaza, Houston, TX, 77030, USA., Gentleman R; 23andMe, 899 West Evelyn Avenue, Mountain View, CA, 94041, USA., Glazer D; Verily Life Sciences LLC, 269 E. Grand Avenue, South San Francisco, CA, 94080, USA., Goldstein MM; Milken Institute School of Public Health, The Georgetown Washington University, 950 New Hampshire Avenue, NW, Second Floor, Washington, DC, 20052, USA., Greely H; Center for Law and the Biosciences, Stanford University, Neukom N361, Stanford, CA, 94305, USA., Harris C; Illumina, Inc., 5200 Research Pl, San Diego, CA, 92122, USA., Knoppers BM; Centre of Genomics and Policy, McGill University, Montreal, 740 Avenue Drive Penfield, Suite 5200, Montreal, Quebec, H3A 0G1, Canada., Koenig BA; Institute for Health and Aging, and Department of Anthropology, History, and Social Medicine, University of California San Francisco, San Francisco, CA, 94143, USA., Kohane IS; Department of Biomedical Informatics, Harvard Medical School, 10 Shattuck Street, Boston, MA, 02115, USA., La Rosa S; Children's Tumor Foundation, 120 Wall Street, 16th Floor, New York, NY, 10005, USA., Mattison J; Kaiser Permanente, University of California San Diego and Singularity University, 4965 Maynard Street, San Diego, CA, 92122, USA., O'Donnell CJ; Center for Population Genomics, Boston Veterans Administration Healthcare, 73 Mount Wayte Avenue, Framingham, MA, 01702, USA., Rai AK; Duke University School of Law; Duke Innovation and Entrepreneurship Initiative, 210 Science Drive, Box 90360, Durham, NC, 27708, USA., Rehm HL; Harvard Medical School, Brigham and Women's Hospital and The Broad Institute of MIT and Harvard, 65 Landsdowne Street, Cambridge, MA, 02139, USA., Rodriguez LL; Division of Policy, Communications, and Education, National Human Genome Research Institute 31 Center Drive, Room 4B09, Bethesda, MD, 20892, USA., Shelton R; Private Access, Inc, 19800 MacArthur Boulevard, Suite 300, Irvine, CA, 92612, USA., Simoncelli T; Broad Institute of Harvard and MIT, 415 Main Street, Cambridge, MA, 02142, USA., Terry SF; Genetic Alliance, 4301 Connecticut Avenue, NW, Suite 404, Washington, DC, 20008, USA., Watson MS; American College of Medical Genetics and Genomics, 7101 Wisconsin Avenue, Suite 1101, Bethesda, MD, 20814, USA., Wilbanks J; Sage Bionetworks, 1100 Fairview Avenue N., Mailstop M1-C108, Seattle, WA, 98109, USA., Cook-Deegan R; 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, 1834 Connecticut Avenue, NW, Washington, DC, 20009, USA., McGuire AL; Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Houston, TX, 77030, USA. amcguire@bcm.edu.
Jazyk: angličtina
Zdroj: Genome medicine [Genome Med] 2017 Sep 22; Vol. 9 (1), pp. 84. Date of Electronic Publication: 2017 Sep 22.
DOI: 10.1186/s13073-017-0476-3
Abstrakt: 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.
Databáze: MEDLINE