ReviewThe Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics2019
Characterizing the Biomedical Data-Sharing Landscape.
Abstract readReview
In one paragraph
Review 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 13 papers.
0numbers the graph read from it
0cells of the map it votes in
13citing papers in PubMed
–field-weighted citation impact
What it found
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Who cites it
13 citing papers in PubMed.
- Current progress in targeted pharmacotherapy to treat symptoms of major depressive disorder: moving from broad-spectrum treatments to precision psychiatry.CNS spectrums · 2025Review
- Data access arrangements in genomic research consortia.Scientific reports · 2024Review
- SHARE: An ethical framework for equitable data sharing in Caribbean health research.Revista panamericana de salud publica = Pan American journal of public health · 2024Article
- Toward a common standard for data and specimen provenance in life sciences.Learning health systems · 2024Article
- EasySMPC: a simple but powerful no-code tool for practical secure multiparty computation.BMC bioinformatics · 2022Article
- Data sharing across osteoarthritis research groups and disciplines: Opportunities and challenges.Osteoarthritis and cartilage open · 2022Article
- Essential requirements for establishing and operating data trusts: practical guidance co-developed by representatives from fifteen canadian organizations and initiatives.International journal of population data science · 2020Article
- SCALEUS-FD: A FAIR Data Tool for Biomedical Applications.BioMed research international · 2020Article
- Genomic Data-Sharing Practices.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
- 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
- Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons.The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2019Article
- What is 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
7 authors.
Angela G VillanuevaAngela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. Barbara A. Koenig, Ph.D., is Professor of Bioethics and Medical Anthropology, based at the Institute for Health & Aging, University of California, San Francisco. Patricia A. Deverka, M.D., M.S., M.B.E., is Director, Value Evidence and Outcomes at Geisinger National Precision Health, where she focuses on demonstrating the value of genomic sequencing for health systems and policy-makers.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. 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. 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.
Robert Cook-DeeganAngela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. Barbara A. Koenig, Ph.D., is Professor of Bioethics and Medical Anthropology, based at the Institute for Health & Aging, University of California, San Francisco. Patricia A. Deverka, M.D., M.S., M.B.E., is Director, Value Evidence and Outcomes at Geisinger National Precision Health, where she focuses on demonstrating the value of genomic sequencing for health systems and policy-makers.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. 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. 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.
Barbara A KoenigAngela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. Barbara A. Koenig, Ph.D., is Professor of Bioethics and Medical Anthropology, based at the Institute for Health & Aging, University of California, San Francisco. Patricia A. Deverka, M.D., M.S., M.B.E., is Director, Value Evidence and Outcomes at Geisinger National Precision Health, where she focuses on demonstrating the value of genomic sequencing for health systems and policy-makers.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. 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. 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.
Patricia A DeverkaAngela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. Barbara A. Koenig, Ph.D., is Professor of Bioethics and Medical Anthropology, based at the Institute for Health & Aging, University of California, San Francisco. Patricia A. Deverka, M.D., M.S., M.B.E., is Director, Value Evidence and Outcomes at Geisinger National Precision Health, where she focuses on demonstrating the value of genomic sequencing for health systems and policy-makers.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. 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. 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 VersalovicAngela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. Barbara A. Koenig, Ph.D., is Professor of Bioethics and Medical Anthropology, based at the Institute for Health & Aging, University of California, San Francisco. Patricia A. Deverka, M.D., M.S., M.B.E., is Director, Value Evidence and Outcomes at Geisinger National Precision Health, where she focuses on demonstrating the value of genomic sequencing for health systems and policy-makers.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. 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. 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.
Amy L McGuireAngela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. Barbara A. Koenig, Ph.D., is Professor of Bioethics and Medical Anthropology, based at the Institute for Health & Aging, University of California, San Francisco. Patricia A. Deverka, M.D., M.S., M.B.E., is Director, Value Evidence and Outcomes at Geisinger National Precision Health, where she focuses on demonstrating the value of genomic sequencing for health systems and policy-makers.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. 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. 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.
Mary A MajumderAngela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. Barbara A. Koenig, Ph.D., is Professor of Bioethics and Medical Anthropology, based at the Institute for Health & Aging, University of California, San Francisco. Patricia A. Deverka, M.D., M.S., M.B.E., is Director, Value Evidence and Outcomes at Geisinger National Precision Health, where she focuses on demonstrating the value of genomic sequencing for health systems and policy-makers.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. 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. 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.
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
$2.4MCenter for Transdisciplinary ELSI Research in Translational GenomicsP20HG007243 · NHGRI · KAISER FOUNDATION RESEARCH INSTITUTE · PI HARRIS-WAI, JULIE NOEL, KOENIG, BARBARA A. · 2013 to 2016
$958kNCI NIH HHS R01 CA237118NHGRI NIH HHS P20 HG007243NHGRI NIH HHS R01 HG008918
Abstract
Advances in technologies and biomedical informatics have expanded capacity to generate and share biomedical data. With a lens on genomic data, we present a typology characterizing the data-sharing landscape in biomedical research to advance understanding of the key stakeholders and existing data-sharing practices. The typology highlights the diversity of data-sharing efforts and facilitators and reveals how novel data-sharing efforts are challenging existing norms regarding the role of individuals whom the data describe.
Indexed as
Databases, Nucleic AcidBiomedical ResearchHumansInformation Dissemination
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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.