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Who Owns the Data in a Medical Information Commons?
Amy L McGuire1, Jessica Roberts1, Sean Aas1
1Amy 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.
This study examines data ownership and stakeholder rights within medical information commons (MICs). It proposes a new governance framework balancing legal, ethical, and practical considerations for equitable data sharing.
Area of Science:
- Health Informatics
- Bioethics
- Data Governance
Background:
- Establishing clear data ownership and rights is crucial for effective medical information commons (MICs).
- Existing governance models may not adequately address the complexities of shared medical data.
- Expert stakeholder perspectives are vital for developing equitable data sharing frameworks.
Purpose of the Study:
- To explore expert stakeholder views on data ownership within MICs.
- To analyze the legitimacy of various claims regarding rights and interests in MIC data.
- To propose an alternative governance framework for MIC participants' rights and interests.
Main Methods:
- Qualitative exploration of expert stakeholder perspectives.
- Legal and ethical analysis of data ownership claims.
- Development of a novel governance framework for MICs.
Main Results:
- Identified diverse perspectives on data ownership among expert stakeholders.
- Evaluated the legal and ethical basis for different data rights claims.
- Proposed a new framework to address participant rights and interests in MICs.
Conclusions:
- A nuanced approach to data ownership and rights is necessary for MICs.
- The proposed framework offers a more equitable and sustainable model for MIC governance.
- Further research is needed to implement and validate the proposed governance structure.
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