What is a Medical Information Commons?

Juli M Bollinger¹, Peter D Zuk¹, Mary A Majumder¹, Erika Versalovic¹, Angela G Villanueva¹, Rebecca L Hsu¹, Amy L McGuire¹, Robert Cook-Deegan¹

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Affiliation

¹ Juli M. Bollinger, M.S., is a Research Associate in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine and a Research Associate and Associate Faculty at the Berman Institute of Bioethics at Johns Hopkins University. Peter D. Zuk is a Research Associate in the Center for Medical Ethics and Health Policy at Baylor College of Medicine and Ph.D. candidate in Philosophy at Rice University (both Houston, TX). Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. Erika Versalovic is a Ph.D. student in the philosophy department at the University of Washington and a neuroethics fellow with the Center for Neurotechnology in Seattle, WA. Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Rebecca L. Hsu is a research coordinator with the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Amy L. McGuire, J.D., Ph.D., is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Dr. McGuire serves on the program committee for the Greenwall Foundation Faculty Scholars Program in Bioethics and is immediate past president of the Association of Bioethics Program Directors. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University.

PMID: 30994065
PMCID: PMC6730652
DOI: 10.1177/1073110519840483

What is a Medical Information Commons?

Juli M Bollinger et al. J Law Med Ethics. 2019 Mar.

. 2019 Mar;47(1):41-50.

doi: 10.1177/1073110519840483.

Authors

Juli M Bollinger¹, Peter D Zuk¹, Mary A Majumder¹, Erika Versalovic¹, Angela G Villanueva¹, Rebecca L Hsu¹, Amy L McGuire¹, Robert Cook-Deegan¹

Affiliation

¹ Juli M. Bollinger, M.S., is a Research Associate in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine and a Research Associate and Associate Faculty at the Berman Institute of Bioethics at Johns Hopkins University. Peter D. Zuk is a Research Associate in the Center for Medical Ethics and Health Policy at Baylor College of Medicine and Ph.D. candidate in Philosophy at Rice University (both Houston, TX). Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. Erika Versalovic is a Ph.D. student in the philosophy department at the University of Washington and a neuroethics fellow with the Center for Neurotechnology in Seattle, WA. Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Rebecca L. Hsu is a research coordinator with the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Amy L. McGuire, J.D., Ph.D., is the Leon Jaworski Professor of Biomedical Ethics and Director of the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Dr. McGuire serves on the program committee for the Greenwall Foundation Faculty Scholars Program in Bioethics and is immediate past president of the Association of Bioethics Program Directors. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University.

PMID: 30994065
PMCID: PMC6730652
DOI: 10.1177/1073110519840483

Abstract

A 2011 National Academies of Sciences report called for an "Information Commons" and a "Knowledge Network" to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.

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References

1. Halpern J, “The U.S. National Academy of Sciences - In Service to Science and Society” Proceedings of the National Academy of Sciences of the United States of America 95, no. 5 (1997): 1606–1608. - PMC - PubMed
1. National Research Council, Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease (Washington, DC: The National Academies Press, 2011), doi: 10.17226/13284. - DOI - PubMed
1. Marshall E, “Bermuda Rules: Community Spirit, With Teeth,” Science 29 (2001): 1192. - PubMed
1. NAP report, supra note 2, at 4.
1. Id., at 2.

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What is a Medical Information Commons?

Affiliation

What is a Medical Information Commons?

Authors

Affiliation

Abstract

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources