Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons

Amy L McGuire¹, Mary A Majumder¹, Angela G Villanueva¹, Jessica Bardill¹, Juli M Bollinger¹, Eric Boerwinkle¹, Tania Bubela¹, Patricia A Deverka¹, Barbara J Evans¹, Nanibaa' A Garrison¹, David Glazer¹, Melissa M Goldstein¹, Henry T Greely¹, Scott D Kahn¹, Bartha M Knoppers¹, Barbara A Koenig¹, J Mark Lambright¹, John E Mattison¹, Christopher O'Donnell¹, Arti K Rai¹, Laura L Rodriguez¹, Tania Simoncelli¹, Sharon F Terry¹, Adrian M Thorogood¹, Michael S Watson¹, John T Wilbanks¹, Robert Cook-Deegan¹

Affiliations

Affiliation

¹ 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. 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. Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Jessica Bardill, Ph.D., is an Assistant Professor of Indigenous Canadian Literatures and Cultures at Concordia University in Montreal, Quebec. Juli 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. Eric Boerwinkle, Ph.D., is the Dean of the University of Texas Health Science Center at Houston, School of Public Health and the Associate Director, Human Genome Sequencing Center at Baylor College of Medicine. Tania Bubela, Ph.D., J.D., is the Dean of the Faculty of Health Sciences at Simon Fraser University and a Fellow of the Canadian Academy of Health Sciences. Patricia Deverka, M.D., M.S., M.B.E., is Director, Value Evidence and Outcomes at Geisinger National Precision Health, where she focuses Outcomes at Geisinger National Precision Health, where she focuses systems and policymakers. Barbara 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. Nanibaa' A. Garrison, Ph.D. (Navajo), is an Assistant Professor at the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital and Research Institute and at the Department of Pediatrics at the University of Washington School of Medicine. David Glazer is an engineering director at Verily Life Sciences, where he helps life science organizations use cloud computing to accelerate and scale their work with big data. Melissa M. Goldstein, J.D., is an Associate Professor in the Department of Health Policy and Management at the Milken Institute School of Public Health at the George Washington University. Henry T. Greely, J.D., is the Deane F. and Kate Edelman Johnson Professor of Law and a professor (by courtesy) of Genetics at Stanford University, where he directs the Center for Law and the Biosciences. He is President of the International Neuroethics Society, co-chair of the Neuroethics Work Group of the NIH BRAIN Initiative, and a member of the National Academies' Committee on Science, Technology, and Law. Scott D. Kahn, Ph.D., is the Chief Information Officer at LunaDNA where he is responsible for all informatics and data science strategy. Bartha M. Knoppers, Ph.D., (Comparative Medical Law), is a Full Professor, Canada Research Chair in Law and Medicine and Director of the Centre of Genomics and Policy of the Faculty of Medicine at McGill 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. She also serve as Director of the UCSF Program in Bioethics. J. Mark Lambright, M.B.A., is the Chairman, Trident Advisors, LLC - CEO (Interim), Private Access, Inc. Mark Lambright has been a senior executive of a number of healthcare and technology companies ranging in size from startup to multi-billion in revenue. John Mattison, M.D., is Assistant Medical Director, KP, SCAL, Chief Health Information Officer. Founder of CDA/CCD (XML standard for healthcare interoperability). Co-Editor of Healthcare Information Technology (2017 McGraw Hill). Christopher J. O'Donnell, M.D., M.P.H., is Chief, Cardiology Section and Director, Center for Population Genomics, of the Boston VA Healthcare System and co-Principal Investigator (Chief Scientist) of the national VA Million Veteran Program; and is VA Contact Principal Investigator of the NIH All of Us Research Program. He is also a faculty member of the Department of Medicine, Brigham and Women's Hospital and Associate Professor of Medicine, Harvard Medical School. Arti K. Rai, J.D., is the Elvin R. Latty Professor of Law and co-Director of the Center for Innovation Policy at Duke Law. Laura L. Rodriguez, Ph.D., is the Director of the Division of Policy, Communications, and Education at the National Human Genome Research Institute. Tania Simoncelli, M.S., is the Director of Science Policy at the Chan Zuckerberg Initiative. Formerly Executive Director, Count Me In at the Broad Institute, Assistant Director of Forensic Science and Biomedical Innovation, White House Office of Science & Technology Policy, and Science Advisor to the American Civil Liberties Union. Sharon F. Terry, M.A., is the president and CEO of Genetic Alliance. Adrian Thorogood, B.C.L./LL.B., is a lawyer and Academic Associate at the Centre of Genomics and Policy at McGill University in Montreal, Canada. He manages the Regulatory and Ethics Work Stream of the Global Alliance for Genomics and Health. Michael S. Watson, M.S., Ph.D., is the Executive Director, American College of Medical Genetics and Genomics and ACMG Foundation for Genetic and Genomic Medicine and an Adjunct Professor of Pediatrics at Washington University School of Medicine. John T. Wilbanks is the Chief Commons Officer at Sage Bionetworks, and co-PI on awards for AllofUs Research Program, ELSI Issues in Unregulated Mobile Research, CTSA Center for Data To Health. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University.

PMID: 30994067
PMCID: PMC6738947
DOI: 10.1177/1073110519840480

Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons

Amy L McGuire et al. J Law Med Ethics. 2019 Mar.

. 2019 Mar;47(1):12-20.

doi: 10.1177/1073110519840480.

Authors

Affiliation

¹ 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. 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. Angela G. Villanueva, M.P.H., is a Research Associate at the Center for Medical Ethics and Health Policy at Baylor College of Medicine. Jessica Bardill, Ph.D., is an Assistant Professor of Indigenous Canadian Literatures and Cultures at Concordia University in Montreal, Quebec. Juli 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. Eric Boerwinkle, Ph.D., is the Dean of the University of Texas Health Science Center at Houston, School of Public Health and the Associate Director, Human Genome Sequencing Center at Baylor College of Medicine. Tania Bubela, Ph.D., J.D., is the Dean of the Faculty of Health Sciences at Simon Fraser University and a Fellow of the Canadian Academy of Health Sciences. Patricia Deverka, M.D., M.S., M.B.E., is Director, Value Evidence and Outcomes at Geisinger National Precision Health, where she focuses Outcomes at Geisinger National Precision Health, where she focuses systems and policymakers. Barbara 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. Nanibaa' A. Garrison, Ph.D. (Navajo), is an Assistant Professor at the Treuman Katz Center for Pediatric Bioethics at Seattle Children's Hospital and Research Institute and at the Department of Pediatrics at the University of Washington School of Medicine. David Glazer is an engineering director at Verily Life Sciences, where he helps life science organizations use cloud computing to accelerate and scale their work with big data. Melissa M. Goldstein, J.D., is an Associate Professor in the Department of Health Policy and Management at the Milken Institute School of Public Health at the George Washington University. Henry T. Greely, J.D., is the Deane F. and Kate Edelman Johnson Professor of Law and a professor (by courtesy) of Genetics at Stanford University, where he directs the Center for Law and the Biosciences. He is President of the International Neuroethics Society, co-chair of the Neuroethics Work Group of the NIH BRAIN Initiative, and a member of the National Academies' Committee on Science, Technology, and Law. Scott D. Kahn, Ph.D., is the Chief Information Officer at LunaDNA where he is responsible for all informatics and data science strategy. Bartha M. Knoppers, Ph.D., (Comparative Medical Law), is a Full Professor, Canada Research Chair in Law and Medicine and Director of the Centre of Genomics and Policy of the Faculty of Medicine at McGill 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. She also serve as Director of the UCSF Program in Bioethics. J. Mark Lambright, M.B.A., is the Chairman, Trident Advisors, LLC - CEO (Interim), Private Access, Inc. Mark Lambright has been a senior executive of a number of healthcare and technology companies ranging in size from startup to multi-billion in revenue. John Mattison, M.D., is Assistant Medical Director, KP, SCAL, Chief Health Information Officer. Founder of CDA/CCD (XML standard for healthcare interoperability). Co-Editor of Healthcare Information Technology (2017 McGraw Hill). Christopher J. O'Donnell, M.D., M.P.H., is Chief, Cardiology Section and Director, Center for Population Genomics, of the Boston VA Healthcare System and co-Principal Investigator (Chief Scientist) of the national VA Million Veteran Program; and is VA Contact Principal Investigator of the NIH All of Us Research Program. He is also a faculty member of the Department of Medicine, Brigham and Women's Hospital and Associate Professor of Medicine, Harvard Medical School. Arti K. Rai, J.D., is the Elvin R. Latty Professor of Law and co-Director of the Center for Innovation Policy at Duke Law. Laura L. Rodriguez, Ph.D., is the Director of the Division of Policy, Communications, and Education at the National Human Genome Research Institute. Tania Simoncelli, M.S., is the Director of Science Policy at the Chan Zuckerberg Initiative. Formerly Executive Director, Count Me In at the Broad Institute, Assistant Director of Forensic Science and Biomedical Innovation, White House Office of Science & Technology Policy, and Science Advisor to the American Civil Liberties Union. Sharon F. Terry, M.A., is the president and CEO of Genetic Alliance. Adrian Thorogood, B.C.L./LL.B., is a lawyer and Academic Associate at the Centre of Genomics and Policy at McGill University in Montreal, Canada. He manages the Regulatory and Ethics Work Stream of the Global Alliance for Genomics and Health. Michael S. Watson, M.S., Ph.D., is the Executive Director, American College of Medical Genetics and Genomics and ACMG Foundation for Genetic and Genomic Medicine and an Adjunct Professor of Pediatrics at Washington University School of Medicine. John T. Wilbanks is the Chief Commons Officer at Sage Bionetworks, and co-PI on awards for AllofUs Research Program, ELSI Issues in Unregulated Mobile Research, CTSA Center for Data To Health. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University.

PMID: 30994067
PMCID: PMC6738947
DOI: 10.1177/1073110519840480

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 (MIC). 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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References

1. See Boyd R, Richerson PJ, Meizen-Dick R, and De Moor T et al. , “Tragedy Revisited,” Science 362, no. 6420 (2018): 1236–1241. - PubMed
1. National Research Council, Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease (Washington, D.C.: The National Academies Press, 2011). - PubMed
1. Cook-Deegan R, Majumder MA, McGuire AL, “Introduction: Sharing Data in a Medical Information Commons,” Journal of Law, Medicine & Ethics 47, no. 1 (2019): 7–11; - PubMed
2. Deverka PA, Majumder MA, Villanueva AG and Anderson M et al. , “Creating a Data Resource: What Will It Take to Build a Medical Information Commons?” Genome Medicine 9, no. 84 (2017): 1–5, available at <https://genomemedicine.biomed-central.com/articles/10.1186/s13073-017-04...> (last visited January 4, 2019). - DOI - PMC - PubMed
1. See Hess C and Ostrom E, eds., Understanding Knowledge as a Commons: From Theory to Practice (Cambridge; London: MIT Press, 2011);
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1. Majumder MA, Bollinger JM, Villanueva AG, Deverka PA, and Koenig BA, “The Role of Participants in a Medical Information Commons,” Journal of Law, Medicine & Ethics 47, no. 1 (2019): 51–61. - PMC - PubMed

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Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons

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Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons

Authors

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Abstract

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Grants and funding

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Full Text Sources