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

Patricia A Deverka¹, Mary A Majumder², Angela G Villanueva², Margaret Anderson³, Annette C Bakker⁴, Jessica Bardill⁵, Eric Boerwinkle⁶, Tania Bubela⁷, Barbara J Evans⁸, Nanibaa' A Garrison⁹, Richard A Gibbs¹⁰, Robert Gentleman¹¹, David Glazer¹², Melissa M Goldstein¹³, Hank Greely¹⁴, Crane Harris¹⁵, Bartha M Knoppers¹⁶, Barbara A Koenig¹⁷, Isaac S Kohane¹⁸, Salvatore La Rosa⁴, John Mattison¹⁹, Christopher J O'Donnell²⁰, Arti K Rai²¹, Heidi L Rehm²², Laura L Rodriguez²³, Robert Shelton²⁴, Tania Simoncelli²⁵, Sharon F Terry²⁶, Michael S Watson²⁷, John Wilbanks²⁸, Robert Cook-Deegan²⁹, Amy L McGuire³⁰

Affiliations

¹ American Institutes for Research, Health Care Group, 100 Europa Drive, Suite 315, Chapel Hill, NC, 27517, USA.
² Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Houston, TX, 77030, USA.
³ Deloitte, 1919 N Lynn, Arlington, VA, 22209, USA.
⁴ Children's Tumor Foundation, 120 Wall Street, 16th Floor, New York, NY, 10005, USA.
⁵ Department of English, Concordia University, 1455 Boulevard de Maisonneuve O, Montreal, QC, H3G 1M8, Canada.
⁶ 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.
⁷ Faculty of Health Sciences, Simon Fraser University, 8888 University Drive, Burnaby, BC, V5A 1S6, Canada.
⁸ Law Center and Department of Electrical and Computer Engineering, University of Houston, 4604 Calhoun Road, Houston, TX, 77004, USA.
⁹ Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institutes, 1900 Ninth Avenue, Room 677, Seattle, WA, 98101, USA.
¹⁰ Human Genome Sequencing Center, Baylor College of Medicine, One Baylor Plaza, Houston, TX, 77030, USA.
¹¹ 23andMe, 899 West Evelyn Avenue, Mountain View, CA, 94041, USA.
¹² Verily Life Sciences LLC, 269 E. Grand Avenue, South San Francisco, CA, 94080, USA.
¹³ Milken Institute School of Public Health, The Georgetown Washington University, 950 New Hampshire Avenue, NW, Second Floor, Washington, DC, 20052, USA.
¹⁴ Center for Law and the Biosciences, Stanford University, Neukom N361, Stanford, CA, 94305, USA.
¹⁵ Illumina, Inc., 5200 Research Pl, San Diego, CA, 92122, USA.
¹⁶ Centre of Genomics and Policy, McGill University, Montreal, 740 Avenue Drive Penfield, Suite 5200, Montreal, Quebec, H3A 0G1, Canada.
¹⁷ Institute for Health and Aging, and Department of Anthropology, History, and Social Medicine, University of California San Francisco, San Francisco, CA, 94143, USA.
¹⁸ Department of Biomedical Informatics, Harvard Medical School, 10 Shattuck Street, Boston, MA, 02115, USA.
¹⁹ Kaiser Permanente, University of California San Diego and Singularity University, 4965 Maynard Street, San Diego, CA, 92122, USA.
²⁰ Center for Population Genomics, Boston Veterans Administration Healthcare, 73 Mount Wayte Avenue, Framingham, MA, 01702, USA.
²¹ Duke University School of Law; Duke Innovation and Entrepreneurship Initiative, 210 Science Drive, Box 90360, Durham, NC, 27708, USA.
²² Harvard Medical School, Brigham and Women's Hospital and The Broad Institute of MIT and Harvard, 65 Landsdowne Street, Cambridge, MA, 02139, USA.
²³ Division of Policy, Communications, and Education, National Human Genome Research Institute 31 Center Drive, Room 4B09, Bethesda, MD, 20892, USA.
²⁴ Private Access, Inc, 19800 MacArthur Boulevard, Suite 300, Irvine, CA, 92612, USA.
²⁵ Broad Institute of Harvard and MIT, 415 Main Street, Cambridge, MA, 02142, USA.
²⁶ Genetic Alliance, 4301 Connecticut Avenue, NW, Suite 404, Washington, DC, 20008, USA.
²⁷ American College of Medical Genetics and Genomics, 7101 Wisconsin Avenue, Suite 1101, Bethesda, MD, 20814, USA.
²⁸ Sage Bionetworks, 1100 Fairview Avenue N., Mailstop M1-C108, Seattle, WA, 98109, USA.
²⁹ 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.
³⁰ Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Houston, TX, 77030, USA. amcguire@bcm.edu.

PMID: 28938910
PMCID: PMC5610432
DOI: 10.1186/s13073-017-0476-3

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

Patricia A Deverka et al. Genome Med. 2017.

. 2017 Sep 22;9(1):84.

doi: 10.1186/s13073-017-0476-3.

Authors

Affiliations

¹ American Institutes for Research, Health Care Group, 100 Europa Drive, Suite 315, Chapel Hill, NC, 27517, USA.
² Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Houston, TX, 77030, USA.
³ Deloitte, 1919 N Lynn, Arlington, VA, 22209, USA.
⁴ Children's Tumor Foundation, 120 Wall Street, 16th Floor, New York, NY, 10005, USA.
⁵ Department of English, Concordia University, 1455 Boulevard de Maisonneuve O, Montreal, QC, H3G 1M8, Canada.
⁶ 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.
⁷ Faculty of Health Sciences, Simon Fraser University, 8888 University Drive, Burnaby, BC, V5A 1S6, Canada.
⁸ Law Center and Department of Electrical and Computer Engineering, University of Houston, 4604 Calhoun Road, Houston, TX, 77004, USA.
⁹ Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institutes, 1900 Ninth Avenue, Room 677, Seattle, WA, 98101, USA.
¹⁰ Human Genome Sequencing Center, Baylor College of Medicine, One Baylor Plaza, Houston, TX, 77030, USA.
¹¹ 23andMe, 899 West Evelyn Avenue, Mountain View, CA, 94041, USA.
¹² Verily Life Sciences LLC, 269 E. Grand Avenue, South San Francisco, CA, 94080, USA.
¹³ Milken Institute School of Public Health, The Georgetown Washington University, 950 New Hampshire Avenue, NW, Second Floor, Washington, DC, 20052, USA.
¹⁴ Center for Law and the Biosciences, Stanford University, Neukom N361, Stanford, CA, 94305, USA.
¹⁵ Illumina, Inc., 5200 Research Pl, San Diego, CA, 92122, USA.
¹⁶ Centre of Genomics and Policy, McGill University, Montreal, 740 Avenue Drive Penfield, Suite 5200, Montreal, Quebec, H3A 0G1, Canada.
¹⁷ Institute for Health and Aging, and Department of Anthropology, History, and Social Medicine, University of California San Francisco, San Francisco, CA, 94143, USA.
¹⁸ Department of Biomedical Informatics, Harvard Medical School, 10 Shattuck Street, Boston, MA, 02115, USA.
¹⁹ Kaiser Permanente, University of California San Diego and Singularity University, 4965 Maynard Street, San Diego, CA, 92122, USA.
²⁰ Center for Population Genomics, Boston Veterans Administration Healthcare, 73 Mount Wayte Avenue, Framingham, MA, 01702, USA.
²¹ Duke University School of Law; Duke Innovation and Entrepreneurship Initiative, 210 Science Drive, Box 90360, Durham, NC, 27708, USA.
²² Harvard Medical School, Brigham and Women's Hospital and The Broad Institute of MIT and Harvard, 65 Landsdowne Street, Cambridge, MA, 02139, USA.
²³ Division of Policy, Communications, and Education, National Human Genome Research Institute 31 Center Drive, Room 4B09, Bethesda, MD, 20892, USA.
²⁴ Private Access, Inc, 19800 MacArthur Boulevard, Suite 300, Irvine, CA, 92612, USA.
²⁵ Broad Institute of Harvard and MIT, 415 Main Street, Cambridge, MA, 02142, USA.
²⁶ Genetic Alliance, 4301 Connecticut Avenue, NW, Suite 404, Washington, DC, 20008, USA.
²⁷ American College of Medical Genetics and Genomics, 7101 Wisconsin Avenue, Suite 1101, Bethesda, MD, 20814, USA.
²⁸ Sage Bionetworks, 1100 Fairview Avenue N., Mailstop M1-C108, Seattle, WA, 98109, USA.
²⁹ 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.
³⁰ Center for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Houston, TX, 77030, USA. amcguire@bcm.edu.

PMID: 28938910
PMCID: PMC5610432
DOI: 10.1186/s13073-017-0476-3

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.

PubMed Disclaimer

Conflict of interest statement

Competing interests

Baylor College of Medicine (BCM) and Miraca Holdings, Inc. have formed a joint venture with shared ownership and governance of the Baylor Genetics Laboratories. All co-authors at BCM have no competing interests. MA was employed at FasterCures during the development of this manuscript and is currently employed by Deloitte. RG is employed by and a shareholder in 23andMe, plus is on the Scientific Advisory Board for the Bioconductor Project and Elixir (EU). DG is employed by Verily. CH is employed by Illumina, Inc. HLR is on the Scientific Advisory Board of Genome Medical, Inc. RS is the CEO of Private Access, Inc. The remaining authors declare that they have no competing interests.

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional.

References

1. The NationalAcademies Press . Toward precision medicine: building a knowledge network for biomedical research and a new taxonomy of disease. 2011. - PubMed
1. Cook-Deegan R, Ankeny RA, Jones KM. Sharing data to build a medical information commons: from Bermuda to the Global Alliance. Annu Rev Genomics Hum Genet. 2017;18:389–415. doi: 10.1146/annurev-genom-083115-022515. - DOI - PMC - PubMed
1. Ostrom E. Governing the commons: the evolution of institutions for collective action. 1. Cambridge; New York: Cambridge University Press; 1990. Analyzing long-enduring, self-organized, and self-governed CPRs; pp. 58–102.
1. Hess C, Ostrom E, editors. Understanding knowledge as a commons: from theory to practice. Cambridge: MIT Press; 2007.
1. Schofield PN, Bubela T, Weaver T, Portilla L, Brown SD, Hancock JM, et al. Post-publication sharing of data and tools. Nature. 2009;461:171–3. doi: 10.1038/461171a. - DOI - PMC - PubMed

Publication types

Actions
Actions

MeSH terms

Actions
Actions
Actions
Actions

Grants and funding

LinkOut - more resources

Full Text Sources
Other Literature Sources
- scite Smart Citations

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

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

Affiliations

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

Authors

Affiliations

Abstract

Conflict of interest statement

Competing interests

Publisher’s Note

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources

Other Literature Sources