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)
| Authors | |
| 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.
|
| Keywords | No keywords specified (fix it) |
| Categories | (categorize this paper) |
| DOI | 10.1177/1073110519840480 |
| Options |
Mark as duplicate
Export citation
Request removal from index
|
Download options
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 - 2021 - Journal of Medical Ethics 47 (7):522-525.
National Institutes of Mental Health Data Archive: Privacy, Consent, and Diversity Considerations and Options for Improvement.Scott M. Lee & Mary A. Majumder - forthcoming - American Journal of Bioethics Neuroscience:1-7.
Mining the Data: Exploring Rural Patients’ Attitudes About the Use of Their Personal Information in Research.Jennifer B. McCormick, Margaret Hopkins, Erik B. Lehman & Michael J. Green - 2022 - AJOB Empirical Bioethics 13 (2):89-106.
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.
Similar books and articles
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.
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.
Characterizing the Biomedical Data-Sharing Landscape.Angela G. Villanueva, Robert Cook-Deegan, Barbara A. Koenig, Patricia A. Deverka, Erika Versalovic, Amy L. McGuire & Mary A. Majumder - 2019 - Journal of Law, Medicine and Ethics 47 (1):21-30.
Who Owns the Data in a Medical Information Commons?Amy L. McGuire, Jessica Roberts, Sean Aas & Barbara J. Evans - 2019 - Journal of Law, Medicine and Ethics 47 (1):62-69.
Medical Information Commons to Support Learning Healthcare Systems: Examples From Canada.Tania Bubela, Shelagh K. Genuis, Naveed Z. Janjua, Mel Krajden, Nicole Mittmann, Katerina Podolak & Lawrence W. Svenson - 2019 - Journal of Law, Medicine and Ethics 47 (1):97-105.
Ethical Obligations in a Tragedy of the Commons.Baylor L. Johnson - 2003 - Environmental Values 12 (3):271-287.
The Importance of Trust for Ethics, Law, and Public Policy.Mark A. Hall - 2005 - Cambridge Quarterly of Healthcare Ethics 14 (2):156-167.
Genomic Data-Sharing Practices.Angela G. Villanueva, Robert Cook-Deegan, Jill O. Robinson, Amy L. McGuire & Mary A. Majumder - 2019 - Journal of Law, Medicine and Ethics 47 (1):31-40.
The Withering Away of Property: The Rise of the Internet Information Commons.John Cahir - 2004 - Oxford Journal of Legal Studies 24 (4):619-641.
Is Consent Based on Trust Morally Inferior to Consent Based on Information?Nana Cecilie Halmsted Kongsholm & Klemens Kappel - 2017 - Bioethics 31 (6):432-442.
Returning a Research Participant's Genomic Results to Relatives: Analysis and Recommendations.Susan M. Wolf, Rebecca Branum, Barbara A. Koenig, Gloria M. Petersen, Susan A. Berry, Laura M. Beskow, Mary B. Daly, Conrad V. Fernandez, Robert C. Green, Bonnie S. LeRoy, Noralane M. Lindor, P. Pearl O'Rourke, Carmen Radecki Breitkopf, Mark A. Rothstein, Brian Van Ness & Benjamin S. Wilfond - 2015 - Journal of Law, Medicine and Ethics 43 (3):440-463.
Trust in the Physician and in Medical Institutions. Modalities of Comprehension and Analysis.Mihaela Radoi & Adrian Lupu - 2014 - Postmodern Openings 5 (4):57-73.
Analytics
Added to PP index
2019-04-18
Total views
46 ( #243,755 of 2,497,781 )
Recent downloads (6 months)
8 ( #89,700 of 2,497,781 )
2019-04-18
Total views
46 ( #243,755 of 2,497,781 )
Recent downloads (6 months)
8 ( #89,700 of 2,497,781 )
How can I increase my downloads?
Downloads
