Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons

Affiliations

Affiliation

¹ 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 policymakers. Dierdre Gilmore, M.A., is a Senior Researcher at the American Institutes for Research. Gilmore earned a MA in Medical Anthropology at the University of London. Jennifer Richmond, M.S.P.H., is a Research Associate at the American Institutes for Research and a doctoral student in the Department of Health Behavior at the University of North Carolina at Chapel Hill (UNC-CH) Gillings School of Global Public Health. Zachary Smith is a Research Assistant at the American Institutes for Research. Rikki Mangrum, M.L.S., is a Senior Research Scientist at the American Institutes for Research. 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 serves as Director of the UCSF Program in Bioethics. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. He is a physician and molecular biologist who turned to policy and then entered academe through Georgetown, Stanford, and Duke Universities before joining ASU. Angela G. Villanueva, M.P.H., is a Research Associate at 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. 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.

PMID: 30994071
PMCID: PMC6730638
DOI: 10.1177/1073110519840486

Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons

Patricia A Deverka et al. J Law Med Ethics. 2019 Mar.

. 2019 Mar;47(1):70-87.

doi: 10.1177/1073110519840486.

Affiliation

¹ 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 policymakers. Dierdre Gilmore, M.A., is a Senior Researcher at the American Institutes for Research. Gilmore earned a MA in Medical Anthropology at the University of London. Jennifer Richmond, M.S.P.H., is a Research Associate at the American Institutes for Research and a doctoral student in the Department of Health Behavior at the University of North Carolina at Chapel Hill (UNC-CH) Gillings School of Global Public Health. Zachary Smith is a Research Assistant at the American Institutes for Research. Rikki Mangrum, M.L.S., is a Senior Research Scientist at the American Institutes for Research. 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 serves as Director of the UCSF Program in Bioethics. Robert Cook-Deegan, M.D., is a Professor in the School for the Future of Innovation in Society at Arizona State University. He is a physician and molecular biologist who turned to policy and then entered academe through Georgetown, Stanford, and Duke Universities before joining ASU. Angela G. Villanueva, M.P.H., is a Research Associate at 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. 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.

PMID: 30994071
PMCID: PMC6730638
DOI: 10.1177/1073110519840486

Abstract

A medical information commons (MIC) is a networked data environment utilized for research and clinical applications. At three deliberations across the U.S., we engaged 75 adults in two-day facilitated discussions on the ethical and social issues inherent to sharing data with an MIC. Deliberants made recommendations regarding opt-in consent, transparent data policies, public representation on MIC governing boards, and strict data security and privacy protection. Community engagement is critical to earning the public's trust.

PubMed Disclaimer

Figures

See this image and copyright information in PMC

Cited by

Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons.
McGuire AL, Majumder MA, Villanueva AG, Bardill J, Bollinger JM, Boerwinkle E, Bubela T, Deverka PA, Evans BJ, Garrison NA, Glazer D, Goldstein MM, Greely HT, Kahn SD, Knoppers BM, Koenig BA, Lambright JM, Mattison JE, O'Donnell C, Rai AK, Rodriguez LL, Simoncelli T, Terry SF, Thorogood AM, Watson MS, Wilbanks JT, Cook-Deegan R. McGuire AL, et al. J Law Med Ethics. 2019 Mar;47(1):12-20. doi: 10.1177/1073110519840480. J Law Med Ethics. 2019. PMID: 30994067 Free PMC article.
Privacy, bias and the clinical use of facial recognition technology: A survey of genetics professionals.
Aboujaoude E, Light J, Brown JEH, Boscardin WJ, Hallgrímsson B, Klein OD. Aboujaoude E, et al. Am J Med Genet C Semin Med Genet. 2023 Sep;193(3):e32035. doi: 10.1002/ajmg.c.32035. Epub 2023 Feb 7. Am J Med Genet C Semin Med Genet. 2023. PMID: 36751120 Free PMC article.
Patient Perspectives and Preferences for Consent in the Digital Health Context: State-of-the-art Literature Review.
Kassam I, Ilkina D, Kemp J, Roble H, Carter-Langford A, Shen N. Kassam I, et al. J Med Internet Res. 2023 Feb 10;25:e42507. doi: 10.2196/42507. J Med Internet Res. 2023. PMID: 36763409 Free PMC article. Review.
Public Involvement and Engagement in Big Data Research: Scoping Review.
Teodorowski P, Jones E, Tahir N, Ahmed S, Rodgers SE, Frith L. Teodorowski P, et al. J Particip Med. 2024 Aug 16;16:e56673. doi: 10.2196/56673. J Particip Med. 2024. PMID: 39150751 Free PMC article.
The involvement of rare disease patient organisations in therapeutic innovation across rare paediatric neurological conditions: a narrative review.
Nguyen CQ, Alba-Concepcion K, Palmer EE, Scully JL, Millis N, Farrar MA. Nguyen CQ, et al. Orphanet J Rare Dis. 2022 Apr 18;17(1):167. doi: 10.1186/s13023-022-02317-6. Orphanet J Rare Dis. 2022. PMID: 35436886 Free PMC article. Review.

See all "Cited by" articles

References

1. National Research Council, 2011, Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease (Washington, DC: The National Academies Press; ); - PubMed
2. Topol EJ, “The Big Medical Data Miss: Challenges in Establishing an Open Medical Resource,” Nature Reviews Genetics 16, no. 5 (2015): 253–254, available at <10.1038/nrg3943> (last visited March 1, 2019); - DOI - PubMed
3. LunaDNA, LunaDNA, Home Page, available at <http://www.lunadna.com>. (last visited July 25, 2018);
4. UK Biobank, UK Biobank, Home Page, available at <http://www.ukbiobank.ac.uk> (last visited July 25, 2018);
5. CARTaGENE, CARTaGENE, Home Page, available at <http://www.cartagene.qc.ca/en/home> (last visited July 25, 2018);
6. deCODE genetics, Unrivaled capabilities, Science, available at <http://www.decode.com/research> (last visited July 25, 2018);
7. Terry SF, Shelton R, Biggers G, Baker D, and Edwards K, “The Haystack is Made of Needles,” Genetic Testing and Molecular Biomarkers 17, no. 3 (2013): 175–177, available at <10.1089/gtmb.2012.1542> (last visited March 1, 2019); - DOI - PubMed
8. Vayena E and Blasimme A, “Biomedical Big Data: New Models of Control Over Access, Use and Governance,” Bioethical Inquiry 14, no. 4 (2017): 501–513, available at <10.1007/s11673-017-9809-6> (last visited March 1, 2019) - DOI - PMC - PubMed
1. Biobanks in this context are repositories of human biological material (e.g., DNA, RNA, tissue, organs, cells) and associated data that can be used in many types of research.
1. Adams SA and Petersen C, “Precision Medicine: Opportunities, Possibilities, and Challenges for Patients and Providers,” Journal of the American Medical Informatics Association 23, no. 4 (2016): 787–790, available at <10.1093/jamia/ocv215> (last visited March 1, 2019). - DOI - PMC - PubMed
1. Olson MV, “Prevision Medicine at the Crossroads,” Human Genomics 11, no. 23 (2017), available at <10.1186/s40246-017-0119-1> (last visited March 1, 2019). - DOI - PMC - PubMed
1. Deverka PA, Majumder MA, Villanueva AG, 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.biomedcentral.com/articles/10.1186/s13073-017-0476-3> (last visited January 17, 2019). - DOI - PMC - PubMed

Publication types

Actions

MeSH terms

Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions
Actions

Grants and funding

LinkOut - more resources

Full Text Sources

Save citation to file

Email citation

Add to Collections

Add to My Bibliography

Your saved search

Create a file for external citation management software

Your RSS Feed

Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons

Affiliation

Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons

Authors

Affiliation

Abstract

Figures

Similar articles

Cited by

References

Publication types

MeSH terms

Grants and funding

LinkOut - more resources

Full Text Sources