Who Owns the Data in a Medical Information Commons?

Amy L McGuire¹, Jessica Roberts¹, Sean Aas¹, Barbara J Evans¹

Affiliations

Affiliation

¹ 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. She received a B.A. in psychology from the University of Pennsylvania, a J.D. from the University of Houston, and a Ph.D. from the Institute for Medical Humanities at the University of Texas Medical Branch. Jessica L. Roberts, J.D., is the Alumnae College Professor in Law at the University of Houston Law Center and a past recipient of a Greenwall Faculty Scholar grant. She earned a B.A. in Political Science from the University of Southern California and a J.D. from Yale Law School. Sean Aas, Ph.D., M.A., is a Senior Research Scholar at the Kennedy Institute of Ethics and an Assistant Professor in the Philosophy Department at Georgetown. He is also, presently, a Greenwall Foundation Faculty Scholar. He earned a B.A. and B.S. in Philosophy and Mathematics at The Evergreen State College, a M.A. in Philosophy from Georgia State University, and a Ph.D. in Philosophy from Brown University. Barbara J. Evans, MS, Ph.D., J.D., LL.M., is the Mary Ann and Lawrence E. Faust Professor of Law and Director of the Center for Biotechnology & Law at the University of Houston Law Center and holds a joint appointment as Professor of Electrical and Computer Engineering at the UH Cullen College of Engineering. She holds a B.S.E.E. from the University of Texas at Austin, M.S. and Ph.D. degrees from Stanford University, a J.D. from Yale Law School, and an LL.M. in Health Law from University of Houston.

PMID: 30994077
PMCID: PMC6727646
DOI: 10.1177/1073110519840485

Who Owns the Data in a Medical Information Commons?

Amy L McGuire et al. J Law Med Ethics. 2019 Mar.

. 2019 Mar;47(1):62-69.

doi: 10.1177/1073110519840485.

Authors

Amy L McGuire¹, Jessica Roberts¹, Sean Aas¹, Barbara J Evans¹

Affiliation

¹ 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. She received a B.A. in psychology from the University of Pennsylvania, a J.D. from the University of Houston, and a Ph.D. from the Institute for Medical Humanities at the University of Texas Medical Branch. Jessica L. Roberts, J.D., is the Alumnae College Professor in Law at the University of Houston Law Center and a past recipient of a Greenwall Faculty Scholar grant. She earned a B.A. in Political Science from the University of Southern California and a J.D. from Yale Law School. Sean Aas, Ph.D., M.A., is a Senior Research Scholar at the Kennedy Institute of Ethics and an Assistant Professor in the Philosophy Department at Georgetown. He is also, presently, a Greenwall Foundation Faculty Scholar. He earned a B.A. and B.S. in Philosophy and Mathematics at The Evergreen State College, a M.A. in Philosophy from Georgia State University, and a Ph.D. in Philosophy from Brown University. Barbara J. Evans, MS, Ph.D., J.D., LL.M., is the Mary Ann and Lawrence E. Faust Professor of Law and Director of the Center for Biotechnology & Law at the University of Houston Law Center and holds a joint appointment as Professor of Electrical and Computer Engineering at the UH Cullen College of Engineering. She holds a B.S.E.E. from the University of Texas at Austin, M.S. and Ph.D. degrees from Stanford University, a J.D. from Yale Law School, and an LL.M. in Health Law from University of Houston.

PMID: 30994077
PMCID: PMC6727646
DOI: 10.1177/1073110519840485

Abstract

In this paper, we explore the perspectives of expert stakeholders about who owns data in a medical information commons (MIC) and what rights and interests ought to be recognized when developing a governance structure for an MIC. We then examine the legitimacy of these claims based on legal and ethical analysis and explore an alternative framework for thinking about participants' rights and interests in an MIC.

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References

1. Davis JH, “President Weighs In on Data From Genes,” The New York Times, February 25, 2016, available at <https://www.nytimes.com/20l6/02/26/us/politics/president-obama-weighs-in...> (last visited January 11, 2019).
2. See also Mikk KA, Sleeper HA, and Topol EJ, “The Pathway to Patient Data Ownership and Better Health,” Journal of the American Medical Association 318, no. 15 (2017): 1433–1434; - PubMed
3. Kish LJ and Topol EJ, “Unpatients – Why Patients Should Own their Medical Data,” Nature Biotechnology 33, no. 9 (2015): 921–924; - PubMed
4. Hall MA and Schulman KA, “Ownership of Medical Information,” Journal of the American Medical Association 301, no. 12 (2009): 1282–1284. - PubMed
1. For example, LunaDNA states on their home webpage “…we believe that you should always control your data, even as you contribute your health data to the advancement of science,” and their FAQs explain: “You own your data so it is completely in your control at all times.” See LunaDNA website, available at <https://www.lunadna.com/> (last visited October 18, 2018).
1. Honoré AM, “Ownership,” in Guest AG, eds., Oxford Essays in Jurisprudence (Oxford: Oxford University Press, 1961): at 107.
1. Id., at 129.
1. Alexander GS and Peñalver EM, An Introduction to Property Theory (Cambridge University Press, 2012): at 2;
2. Björkman B and Hansson SO, “Bodily Rights and Property Rights,” Journal of Medical Ethics 32 no. 4 (2006): at 210 (citing H. Sidgwick, Elements of Politics (London: Cambridge University Press, 1891)); - PMC - PubMed
3. Ossorio PN, “Property and Human Bodies,” in Magnus D, Caplan A, and McGee G, eds., Who Owns Life? (Amherst: Prometheus Books, 2002): at 224–225.

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Who Owns the Data in a Medical Information Commons?

Affiliation

Who Owns the Data in a Medical Information Commons?

Authors

Affiliation

Abstract

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources