Amy L. McGuire, Mary A. Majumder, Angela G. Villanueva, Jessica Bardill, Juli M. Bollinger, Eric Boerwinkle, Tania Bubela, Patricia A. Deverka, Barbara J. Evans, Nanibaa' A. Garrison, David Glazer, Melissa M. Goldstein, Henry T. Greely, Scott D. Kahn, Bartha M. Knoppers, Barbara A. Koenig, J. Mark Lambright, John E. Mattison, Christopher O'Donnell, Arti K. Rai, Laura L. Rodriguez, Tania Simoncelli, Sharon F. Terry, Adrian M. Thorogood, Michael S. Watson, John T. Wilbanks & Robert Cook-Deegan
Journal of Law, Medicine and Ethics 47 (1):12-20 (2019)
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Abstract |
Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.
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DOI | 10.1177/1073110519840480 |
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References found in this work BETA
What is a Medical Information Commons?Juli M. Bollinger, Peter D. Zuk, Mary A. Majumder, Erika Versalovic, Angela G. Villanueva, Rebecca L. Hsu, Amy L. McGuire & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):41-50.
The Role of Participants in a Medical Information Commons.Mary A. Majumder, Juli M. Bollinger, Angela G. Villanueva, Patricia A. Deverka & Barbara A. Koenig - 2019 - Journal of Law, Medicine and Ethics 47 (1):51-61.
Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.Patricia A. Deverka, Dierdre Gilmore, Jennifer Richmond, Zachary Smith, Rikki Mangrum, Barbara A. Koenig, Robert Cook-Deegan, Angela G. Villanueva, Mary A. Majumder & Amy L. McGuire - 2019 - Journal of Law, Medicine and Ethics 47 (1):70-87.
Criminal Prohibition of Wrongful Re‑Identification: Legal Solution or Minefield for Big Data?Mark Phillips, Edward S. Dove & Bartha M. Knoppers - 2017 - Journal of Bioethical Inquiry 14 (4):527-539.
Citations of this work BETA
What is a Medical Information Commons?Juli M. Bollinger, Peter D. Zuk, Mary A. Majumder, Erika Versalovic, Angela G. Villanueva, Rebecca L. Hsu, Amy L. McGuire & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):41-50.
Public Involvement in the Governance of Population-Level Biomedical Research: Unresolved Questions and Future Directions.Sonja Erikainen, Phoebe Friesen, Leah Rand, Karin Jongsma, Michael Dunn, Annie Sorbie, Matthew McCoy, Jessica Bell, Michael Burgess, Haidan Chen, Vicky Chico, Sarah Cunningham-Burley, Julie Darbyshire, Rebecca Dawson, Andrew Evans, Nick Fahy, Teresa Finlay, Lucy Frith, Aaron Goldenberg, Lisa Hinton, Nils Hoppe, Nigel Hughes, Barbara Koenig, Sapfo Lignou, Michelle McGowan, Michael Parker, Barbara Prainsack, Mahsa Shabani, Ciara Staunton, Rachel Thompson, Kinga Varnai, Effy Vayena, Oli Williams, Max Williamson, Sarah Chan & Mark Sheehan - forthcoming - Journal of Medical Ethics:medethics-2020-106530.
Learning Health System — Moving From Ethical Frameworks to Practical Implementation.Stephanie R. Morain, Mary A. Majumder & Amy L. McGuire - 2019 - Journal of Law, Medicine and Ethics 47 (3):454-458.
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