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Introduction: Sharing Data in a Medical Information Commons

Published online by Cambridge University Press:  01 January 2021

Abstract

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

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References

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 3, 2019).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; The sources of data include databases created for many different purposes. In genomics, most were created to collect data for researchers, but many genomic databases are now used in health care. Some databases, such as cancer registries, were established for public health surveillance, but are highly useful for both research and clinical care. Testing laboratories are a direct source of many data — for example, genomic testing laboratories, clinical laboratories, and imaging facilities. Moreover, as medical records are increasingly digitized, unstructured data are being transformed into forms that enable analysis of health outcomes and for other purposes. Also, many efforts are underway to integrate social determinants of health, genomic, imaging and laboratory data into electronic health records. The users of data include scientists hoping to understand biology or disease, but also health professionals helping individuals make decisions about health care interventions, counseling them about the meaning of data. Increasingly, individuals are using health and genomic data themselves.CrossRefGoogle Scholar
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See Majumder, M.A., Cook-Deegan, R., and McGuire, A.L., “Beyond Our Borders? Public Resistance to Global Genomic Data Sharing,” PLoS Biol 14, no. 11 (2016): e2000206, available at <https://doi.org/10.1371/journal.pbio.2000206> (last visited January 3, 2019).CrossRefGoogle Scholar
Rehm, H., Berg, J.S., and Plon, S.E., “ClinGen and ClinVar – Enabling Genomics in Precision Medicine,” Human Mutation 39, no. 11 (2018), available at <https://doi.org/10.1002/humu.23654> (last visited January 3, 2019); M.J. Landrum and B.L Kattman, “ClinVar at Five Years: Delivering on the Promise,” Human Mutation 39, no. 11 (2018), available at <https://doi.org/10.1002/humu.23641> (last visited January 3, 2019).Google Scholar
Landrum, M.J., Lee, J.M, Benson, M., and Brown, G. et al., “ClinVar: Public Archive of Interpretations of Clinically Relevant Variants,” Nucleic Acids Research 4, no. 44 (Database issue, 2016): D862868, available at <https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4702865/> (last visited January 3, 2019).+(last+visited+January+3,+2019).>Google Scholar
See, e.g., Knoppers, B.M. and Joly, Y., “Introduction: The Why and Whither of Genomic Data Sharing,” Human Genetics 137 (2018): 569-574, available at <https://link.springer.com/article/10.1007/s00439-018-1923-y> (last visited January 3, 2019).Google Scholar
Deverka, supra note 1.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.CrossRefGoogle Scholar
See Villanueva, supra note 2.Google Scholar
Villanueva, A.G., Cook-Deegan, R., Robinson, J.O., and McGuire, A.L. et al., “Genomic Data-Sharing Practices,” Journal of Law, Medicine & Ethics 47, no. 1 (2019): 31-40.CrossRefGoogle Scholar
Bollinger, J.M., Zuk, P.D., Majumder, M.A., and Versalovic, E. et al., “What Is a Medical Information Commons,” Journal of Law, Medicine & Ethics 47, no. 1 (2019): 41-50.CrossRefGoogle Scholar
Majumder, M.A., Bollinger, J.M., Villanueva, A. G., Deverka, P.A., and Koenig, B.A., “The Role of Participants in a Medical Information Commons,” Journal of Law, Medicine & Ethics 47, no. 1 (2019): 51-61.Google Scholar
McGuire, A.L., Roberts, J., Aas, S., and Evans, B.J., “Who Owns the Data in a Medical Information Commons?” Journal of Law, Medicine & Ethics, 47, no. 1 (2019): 62-69.CrossRefGoogle Scholar
Deverka, P.A., Gilmore, D., Richmond, J., and Smith, Z. et al., “Hopeful and Concerned: Public Input on Building a Trustworthy Medical Information Commons,” Journal of Law, Medicine & Ethics 47, no. 1 (2019): 70-87.CrossRefGoogle Scholar
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Phillips, M. and Knoppers, B.M., “Whose Commons? Data Protection as a Legal Limit of Open Science,” Journal of Law, Medicine & Ethics 47, no. 1 (2019): 106-111.CrossRefGoogle Scholar
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