Who Owns the Data in a Medical Information Commons?

Amy L McGuire; Jessica Roberts; Sean Aas; Barbara J Evans

doi:10.1177/1073110519840485

Who Owns the Data in a Medical Information Commons?

J Law Med Ethics. 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.

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.

Publication types

Research Support, N.I.H., Extramural
Research Support, Non-U.S. Gov't

MeSH terms

Databases as Topic / legislation & jurisprudence*
Databases, Genetic / legislation & jurisprudence
Humans
Information Dissemination / legislation & jurisprudence*
Ownership / legislation & jurisprudence*
Ownership / organization & administration*
United States

Abstract

Publication types

MeSH terms

Grants and funding