Evidence map›Paper›PMID 30994077›Full record

ArticleThe Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics2019

Who Owns the Data in a Medical Information Commons?

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

Abstract read
PubMed Full text at PMC Publisher
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 11 papers.

0numbers the graph read from it
0cells of the map it votes in
11citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

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.

2 · The registry

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.

3 · Its place in the literature

Who cites it

11 citing papers in PubMed.

  1. Review
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  10. Article
  11. What is a Medical Information Commons?The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019
    Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

4 authors.

Amy L McGuireAmy 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.
Jessica RobertsAmy 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.
Sean AasAmy 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.
Barbara J EvansAmy 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.

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
$2.4M
The 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
$2.4M
NCI NIH HHS R01 CA237118NHGRI NIH HHS R01 HG008918
6 · The paper itself

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.

Indexed as

Databases as TopicDatabases, GeneticHumansInformation DisseminationOwnershipUnited States

Identifiers

PMID30994077
PMCPMC6727646

What OpenQuestion holds

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Registered trials

None linked

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.