ArticleThe Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics2019
What is a Medical Information Commons?
Abstract read
In one paragraph
Article in The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers, 1 of them a synthesis that pooled it.
0numbers the graph read from it
0cells of the map it votes in
6citing papers in PubMed, 1 pooled it
–field-weighted citation impact
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
6 citing papers in PubMed, 1 synthesis or guideline pooled it.
- The ethical and legal landscape of brain data governance.PloS one · 2022Pooled it
- Opportunities and challenges of 5G network technology toward precision medicine.Clinical and translational science · 2023Review
- Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019Article
- BRCA1/2 Variant Data-Sharing Practices.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019Article
- The Role of Participants in a Medical Information Commons.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019Article
- Who Owns the Data in a Medical Information Commons?The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
8 authors.
Juli M BollingerJuli M. Bollinger, M.S., is a Research Associate in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine and a Research Associate and Associate Faculty at the Berman Institute of Bioethics at Johns Hopkins University. Peter D. Zuk is a Research Associate in the Center for Medical Ethics and Health Policy at Baylor College of Medicine and Ph.D. candidate in Philosophy at Rice University (both Houston, TX). Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. Erika Versalovic is a Ph.D. student in the philosophy department at the University of Washington and a neuroethics fellow with the Center for Neurotechnology in Seattle, WA. Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Rebecca L. Hsu is a research coordinator with the Center for Medical Ethics and Health Policy at Baylor College of Medicine. 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. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University.
Peter D ZukJuli M. Bollinger, M.S., is a Research Associate in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine and a Research Associate and Associate Faculty at the Berman Institute of Bioethics at Johns Hopkins University. Peter D. Zuk is a Research Associate in the Center for Medical Ethics and Health Policy at Baylor College of Medicine and Ph.D. candidate in Philosophy at Rice University (both Houston, TX). Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. Erika Versalovic is a Ph.D. student in the philosophy department at the University of Washington and a neuroethics fellow with the Center for Neurotechnology in Seattle, WA. Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Rebecca L. Hsu is a research coordinator with the Center for Medical Ethics and Health Policy at Baylor College of Medicine. 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. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University.
Mary A MajumderJuli M. Bollinger, M.S., is a Research Associate in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine and a Research Associate and Associate Faculty at the Berman Institute of Bioethics at Johns Hopkins University. Peter D. Zuk is a Research Associate in the Center for Medical Ethics and Health Policy at Baylor College of Medicine and Ph.D. candidate in Philosophy at Rice University (both Houston, TX). Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. Erika Versalovic is a Ph.D. student in the philosophy department at the University of Washington and a neuroethics fellow with the Center for Neurotechnology in Seattle, WA. Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Rebecca L. Hsu is a research coordinator with the Center for Medical Ethics and Health Policy at Baylor College of Medicine. 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. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University.
Erika VersalovicJuli M. Bollinger, M.S., is a Research Associate in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine and a Research Associate and Associate Faculty at the Berman Institute of Bioethics at Johns Hopkins University. Peter D. Zuk is a Research Associate in the Center for Medical Ethics and Health Policy at Baylor College of Medicine and Ph.D. candidate in Philosophy at Rice University (both Houston, TX). Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. Erika Versalovic is a Ph.D. student in the philosophy department at the University of Washington and a neuroethics fellow with the Center for Neurotechnology in Seattle, WA. Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Rebecca L. Hsu is a research coordinator with the Center for Medical Ethics and Health Policy at Baylor College of Medicine. 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. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University.
Angela G VillanuevaJuli M. Bollinger, M.S., is a Research Associate in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine and a Research Associate and Associate Faculty at the Berman Institute of Bioethics at Johns Hopkins University. Peter D. Zuk is a Research Associate in the Center for Medical Ethics and Health Policy at Baylor College of Medicine and Ph.D. candidate in Philosophy at Rice University (both Houston, TX). Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. Erika Versalovic is a Ph.D. student in the philosophy department at the University of Washington and a neuroethics fellow with the Center for Neurotechnology in Seattle, WA. Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Rebecca L. Hsu is a research coordinator with the Center for Medical Ethics and Health Policy at Baylor College of Medicine. 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. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University.
Rebecca L HsuJuli M. Bollinger, M.S., is a Research Associate in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine and a Research Associate and Associate Faculty at the Berman Institute of Bioethics at Johns Hopkins University. Peter D. Zuk is a Research Associate in the Center for Medical Ethics and Health Policy at Baylor College of Medicine and Ph.D. candidate in Philosophy at Rice University (both Houston, TX). Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. Erika Versalovic is a Ph.D. student in the philosophy department at the University of Washington and a neuroethics fellow with the Center for Neurotechnology in Seattle, WA. Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Rebecca L. Hsu is a research coordinator with the Center for Medical Ethics and Health Policy at Baylor College of Medicine. 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. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University.
Amy L McGuireJuli M. Bollinger, M.S., is a Research Associate in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine and a Research Associate and Associate Faculty at the Berman Institute of Bioethics at Johns Hopkins University. Peter D. Zuk is a Research Associate in the Center for Medical Ethics and Health Policy at Baylor College of Medicine and Ph.D. candidate in Philosophy at Rice University (both Houston, TX). Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. Erika Versalovic is a Ph.D. student in the philosophy department at the University of Washington and a neuroethics fellow with the Center for Neurotechnology in Seattle, WA. Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Rebecca L. Hsu is a research coordinator with the Center for Medical Ethics and Health Policy at Baylor College of Medicine. 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. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University.
Robert Cook-DeeganJuli M. Bollinger, M.S., is a Research Associate in the Center for Medical Ethics and Health Policy at the Baylor College of Medicine and a Research Associate and Associate Faculty at the Berman Institute of Bioethics at Johns Hopkins University. Peter D. Zuk is a Research Associate in the Center for Medical Ethics and Health Policy at Baylor College of Medicine and Ph.D. candidate in Philosophy at Rice University (both Houston, TX). Mary A. Majumder, J.D., Ph.D., is an Associate Professor of Medicine at the Center for Medical Ethics and Health Policy, Baylor College of Medicine. Erika Versalovic is a Ph.D. student in the philosophy department at the University of Washington and a neuroethics fellow with the Center for Neurotechnology in Seattle, WA. Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Rebecca L. Hsu is a research coordinator with the Center for Medical Ethics and Health Policy at Baylor College of Medicine. 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. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University.
Funding
Building the Medical Information Commons: Participant Engagement and PolicyR01HG008918 · NHGRI · BAYLOR COLLEGE OF MEDICINE · PI COOK-DEEGAN, ROBERT MULLAN, MCGUIRE, AMY L · 2015 to 2017
$2.4MThe Sulston Project: making the knowledge commons for interpreting cancer genomic variants more effectiveR01CA237118 · NCI · ARIZONA STATE UNIVERSITY-TEMPE CAMPUS · PI COOK-DEEGAN, ROBERT MULLAN, MCGUIRE, AMY L · 2019 to 2022
$2.4MNCI NIH HHS R01 CA237118NHGRI NIH HHS R01 HG008918
Abstract
A 2011 National Academies of Sciences report called for an "Information Commons" and a "Knowledge Network" to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.
Indexed as
Information DisseminationAttitudeHumansInformation TechnologyMedical InformaticsNational Academy of Sciences, U.S.Stakeholder ParticipationUnited States
Identifiers
What OpenQuestion holds
Textmetadata
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Read underepoch 390
Registered trials
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.