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What is a Medical Information Commons?

Published online by Cambridge University Press:  01 January 2021

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.

Type
Symposium Articles
Copyright
Copyright © American Society of Law, Medicine and Ethics 2019

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References

Halpern, J., “The U.S. National Academy of Sciences – In Service to Science and Society” Proceedings of the National Academy of Sciences of the United States of America 95, no. 5 (1997): 1606-1608.CrossRefGoogle Scholar
National Research Council, Toward Precision Medicine: Building a Knowledge Network for Biomedical Research and a New Taxonomy of Disease (Washington, DC: The National Academies Press, 2011), doi: http://dx.doi.org/10.17226/13284.Google Scholar
Marshall, E., “Bermuda Rules: Community Spirit, With Teeth,” Science 29 (2001): 1192.Google Scholar
NAP report, supra note 2, at 4.Google Scholar
Id., at 2.Google Scholar
Id., at 3.Google Scholar
National Institutes of Health, Home Page, All of Us Research Program website, available at <https://allofus.nih.gov/> (last visited September 11, 2018); National Cancer Institute, GDC Overview, Genomic Data Commons Website, available at <https://gdc.cancer.gov/about-gdc/gdc-overview> (last visited September 11, 2018). National Institutes of Health, Big Data to Knowledge (July 2018), Big Data to Knowledge Initiative website, available at <https://commonfund.nih.gov/bd2k> (last visited September 11, 2018), 23andMe Research Participation website, available at <https://www.23andme.com/research/> (last visited September 11, 2018); Project Baseline, The Study, Project Baseline website, available at <https://www.projectbaseline.com/study/> (last visited September 11, 2018); Global Alliance for Genomics and Health, Home Page, Global Alliance for Genomics and Health website, available at <https://www.ga4gh.org/> (last visited September 11, 2018).+(last+visited+September+11,+2018);+National+Cancer+Institute,+GDC+Overview,+Genomic+Data+Commons+Website,+available+at++(last+visited+September+11,+2018).+National+Institutes+of+Health,+Big+Data+to+Knowledge+(July+2018),+Big+Data+to+Knowledge+Initiative+website,+available+at++(last+visited+September+11,+2018),+23andMe+Research+Participation+website,+available+at++(last+visited+September+11,+2018);+Project+Baseline,+The+Study,+Project+Baseline+website,+available+at++(last+visited+September+11,+2018);+Global+Alliance+for+Genomics+and+Health,+Home+Page,+Global+Alliance+for+Genomics+and+Health+website,+available+at++(last+visited+September+11,+2018).>Google Scholar
Deverka, P.A., Majumder, M.A., Villanueva, A.G., 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.biomedcentral.com/articles/10.1186/s13073-017-0476-3> (last visited January 8, 2019).CrossRefGoogle Scholar
See Majumder, M.A., Zuk, P.D., and McGuire, A.L., “Medical Information Commons,” in Hudson, B., Rosenbloom, J., and Cole, D., eds., Routledge Handbook of the Study of the Commons (Taylor & Francis Group, Forthcoming 2019); T. Dietz, E. Ostrom, and P.C. Stern, “The Struggle to Govern the Commons,” Science 302, no. 5652 (2003): 1907-1912.Google Scholar
McGuire, A.L., Majumder, M.A., Villanueva, A.G., and Bardill, J. et al., “Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons,” Journal of Law, Medicine & Ethics 47, no. 1 (2019): 12-20; M.A. Majumder, J.M. Bollinger, A. G. Villanueva, P.A. Deverka, and B.A. Koenig, “The Role of Participants in a Medical Information Commons,” Journal of Law, Medicine & Ethics 47, no. 1 (2019): 51-61; A.L. McGuire, J. Roberts, S. Aas, B.J. Evans, “Who Owns the Data in a Medical Information Commons?” Journal of Law, Medicine & Ethics 47, no. 1 (2019): 62-69.CrossRefGoogle Scholar
NVivo qualitative data analysis Software; QSR International Pty Ltd. Version 10, 2012.Google Scholar
Typologies in which commons are arrayed on a spectrum from fully centralized to fully decentralized, with some form of federation as the middle way, are common. For a helpful discussion of these distinctions, see, e.g., Contreras and Reichman, “Sharing by Design: Data and Decentralized Commons,” Science 350, no. 6266 (2015): 1312-1314, available at <http://science.sciencemag.org/content/350/6266/1312/tabpdf> (last visited January 8, 2019).CrossRef+(last+visited+January+8,+2019).>Google Scholar
See A.L. McGuire, supra note 10.Google Scholar
National Academies of Sciences, Engineering, and Medicine. “Returning Individual Research Results to Participants: Guidance for a New Research Paradigm,” (Washington, DC: The National Academies Press, 2018), http://dx.doi.org/doi.org/10.17226/25094.Google Scholar
Ostrom, E., Governing the Commons (Cambridge, United Kingdom: Cambridge University Press, 2015): at 106-114.CrossRefGoogle Scholar
Villanueva, A.G., Cook-Deegan, R., Koenig, B.A., and Deverka, P.A. et al., “Characterizing the Biomedical Data-Sharing Landscape,” Journal of Law, Medicine & Ethics 47, no. 1 (2019): 21-30; P. F. Sullivan, A. Agrawal, C. M. Bulik, and O.A. Andreassen et al., “Psychiatric Genomics: An Update and an Agenda,” The American Journal of Psychiatry 175, no. 1 (2017) 15-27.CrossRefGoogle Scholar
See Villanueva, supra note 16.Google Scholar
See Villanueva, supra note 16.Google Scholar
See Ostrom, supra note 15 at 93-94.Google Scholar
See Deverka, supra note 8.Google Scholar
Wilkinson, M. D., Dumontier, M., Aalbersberg, I.J.J., Appleton, G., Axton, M., Baak, A., and Mons, B., “The FAIR Guiding Principles for Scientific Data Management and Stewardship,” Scientific Data 3 (2016): 160018.Google Scholar
See Majumder, supra note 9.Google Scholar
See A.L. McGuire, supra note 10.Google Scholar
See Ostrom, supra note 15 at 93.Google Scholar
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