Evidence map›Paper›PMID 28938910›Full record

ArticleGenome medicine2017

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 and 22 more

Abstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in Genome medicine, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 29 papers, 1 of them a synthesis that pooled it.

0numbers the graph read from it
0cells of the map it votes in
29citing papers in PubMed, 1 pooled it
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

29 citing papers in PubMed, 1 synthesis or guideline pooled it.

  1. Pooled it
  2. Article
  3. Article
  4. Article
  5. Article
  6. Review
  7. Article
  8. Review
  9. Article
  10. Article
  11. Where Does Open Science Lead Us During a Pandemic? A Public Good Argument to Prioritize Rights in the Open Commons.Cambridge quarterly of healthcare ethics : CQ : the international journal of healthcare ethics committees · 2021
    Article
  12. Article
  13. Article
  14. Article
  15. Article
  16. What is a Medical Information Commons?The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019
    Article
  17. The Role of Participants in a Medical Information Commons.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019
    Article
  18. Who Owns the Data in a Medical Information Commons?The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019
    Article
  19. Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019
    Article
  20. Characterizing the Biomedical Data-Sharing Landscape.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019
    Review
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

32 authors.

Patricia A DeverkaAmerican Institutes for Research, Health Care Group, 100 Europa Drive, Suite 315, Chapel Hill, NC, 27517, USA.
Mary A MajumderCenter for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Houston, TX, 77030, USA.
Angela G VillanuevaCenter for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Houston, TX, 77030, USA.
Margaret AndersonDeloitte, 1919 N Lynn, Arlington, VA, 22209, USA.
Annette C BakkerChildren's Tumor Foundation, 120 Wall Street, 16th Floor, New York, NY, 10005, USA.
Jessica BardillDepartment of English, Concordia University, 1455 Boulevard de Maisonneuve O, Montreal, QC, H3G 1M8, Canada.
Eric BoerwinkleHuman 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.
Tania BubelaFaculty of Health Sciences, Simon Fraser University, 8888 University Drive, Burnaby, BC, V5A 1S6, Canada.
Barbara J EvansLaw Center and Department of Electrical and Computer Engineering, University of Houston, 4604 Calhoun Road, Houston, TX, 77004, USA.
Nanibaa' A GarrisonTreuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institutes, 1900 Ninth Avenue, Room 677, Seattle, WA, 98101, USA.
Richard A GibbsHuman Genome Sequencing Center, Baylor College of Medicine, One Baylor Plaza, Houston, TX, 77030, USA.
Robert Gentleman23andMe, 899 West Evelyn Avenue, Mountain View, CA, 94041, USA.
David GlazerVerily Life Sciences LLC, 269 E. Grand Avenue, South San Francisco, CA, 94080, USA.
Melissa M GoldsteinMilken Institute School of Public Health, The Georgetown Washington University, 950 New Hampshire Avenue, NW, Second Floor, Washington, DC, 20052, USA.
Hank GreelyCenter for Law and the Biosciences, Stanford University, Neukom N361, Stanford, CA, 94305, USA.
Crane HarrisIllumina, Inc., 5200 Research Pl, San Diego, CA, 92122, USA.
Bartha M KnoppersCentre of Genomics and Policy, McGill University, Montreal, 740 Avenue Drive Penfield, Suite 5200, Montreal, Quebec, H3A 0G1, Canada.
Barbara A KoenigInstitute for Health and Aging, and Department of Anthropology, History, and Social Medicine, University of California San Francisco, San Francisco, CA, 94143, USA.
Isaac S KohaneDepartment of Biomedical Informatics, Harvard Medical School, 10 Shattuck Street, Boston, MA, 02115, USA.
Salvatore La RosaChildren's Tumor Foundation, 120 Wall Street, 16th Floor, New York, NY, 10005, USA.
John MattisonKaiser Permanente, University of California San Diego and Singularity University, 4965 Maynard Street, San Diego, CA, 92122, USA.
Christopher J O'DonnellCenter for Population Genomics, Boston Veterans Administration Healthcare, 73 Mount Wayte Avenue, Framingham, MA, 01702, USA.
Arti K RaiDuke University School of Law; Duke Innovation and Entrepreneurship Initiative, 210 Science Drive, Box 90360, Durham, NC, 27708, USA.
Heidi L RehmHarvard Medical School, Brigham and Women's Hospital and The Broad Institute of MIT and Harvard, 65 Landsdowne Street, Cambridge, MA, 02139, USA.
Laura L RodriguezDivision of Policy, Communications, and Education, National Human Genome Research Institute 31 Center Drive, Room 4B09, Bethesda, MD, 20892, USA.
Robert SheltonPrivate Access, Inc, 19800 MacArthur Boulevard, Suite 300, Irvine, CA, 92612, USA.
Tania SimoncelliBroad Institute of Harvard and MIT, 415 Main Street, Cambridge, MA, 02142, USA.
Sharon F TerryGenetic Alliance, 4301 Connecticut Avenue, NW, Suite 404, Washington, DC, 20008, USA.
Michael S WatsonAmerican College of Medical Genetics and Genomics, 7101 Wisconsin Avenue, Suite 1101, Bethesda, MD, 20814, USA.
John WilbanksSage Bionetworks, 1100 Fairview Avenue N., Mailstop M1-C108, Seattle, WA, 98109, USA.
Robert Cook-DeeganSchool 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.
Amy L McGuireCenter for Medical Ethics and Health Policy, Baylor College of Medicine, One Baylor Plaza, Houston, TX, 77030, USA. amcguire@bcm.edu.

Funding

TrainingU54HG007963 · NHGRI · HARVARD MEDICAL SCHOOL · PI KOHANE, ISAAC S., MURPHY, SHAWN N · 2014 to 2018
$18.3M
Integration of Whole Genome Sequencing into Clinical MedicineU01HG006500 · NHGRI · BRIGHAM AND WOMEN'S HOSPITAL · PI GREEN, ROBERT C. · 2012 to 2016
$11.5M
Clinical sequencing in cancer: Clinical ethical and technological studiesU01HG006507 · NHGRI · UNIVERSITY OF WASHINGTON · PI JARVIK, GAIL PAIRITZ · 2012 to 2016
$10.6M
CSER RoRC Centralized Support Coordinating CenterU01HG007307 · NHGRI · UNIVERSITY OF WASHINGTON · PI BURKE, WYLIE G., JARVIK, GAIL PAIRITZ · 2013 to 2016
$3.6M
Building the Medical Information Commons: Participant Engagement and PolicyR01HG008918 · NHGRI · BAYLOR COLLEGE OF MEDICINE · PI COOK-DEEGAN, ROBERT MULLAN, MCGUIRE, AMY L · 2015 to 2017
$2.4M
Center for Transdisciplinary ELSI Research in Translational GenomicsP20HG007243 · NHGRI · KAISER FOUNDATION RESEARCH INSTITUTE · PI HARRIS-WAI, JULIE NOEL, KOENIG, BARBARA A. · 2013 to 2016
$958k
Genomics and Native Communities: Perspectives, Ethics, and EngagementK01HG008818 · NHGRI · UNIVERSITY OF CALIFORNIA LOS ANGELES · PI GARRISON, NANIBAA' A · 2016 to 2020
$819k
NHGRI NIH HHS K01 HG008818NHGRI NIH HHS P20 HG007243NHGRI NIH HHS R01 HG008918NHGRI NIH HHS U01 HG006500NHGRI NIH HHS U01 HG006507NHGRI NIH HHS U01 HG007307NHGRI NIH HHS U54 HG007963
6 · The paper itself

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.

Indexed as

Information DisseminationMedical InformaticsHumansInformation Services

Identifiers

PMID28938910
PMCPMC5610432

What OpenQuestion holds

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LicenceCC BY
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.