Journal of Bioethical Inquiry 14 (4):527-539 (2017)
Abstract |
The collapse of confidence in anonymization as a robust approach for preserving the privacy of personal data has incited an outpouring of new approaches that aim to fill the resulting trifecta of technical, organizational, and regulatory privacy gaps left in its wake. In the latter category, and in large part due to the growth of Big Data–driven biomedical research, falls a growing chorus of calls for criminal and penal offences to sanction wrongful re-identification of “anonymized” data. This chorus cuts across the fault lines of polarized privacy law scholarship that at times seems to advocate privacy protection at the expense of Big Data research or vice versa. Focusing on Big Data in the context of biomedicine, this article surveys the approaches that criminal or penal law might take toward wrongful re-identification of health data. It contextualizes the strategies within their respective legal regimes as well as in relation to emerging privacy debates focusing on personal data use and data linkage and assesses the relative merit of criminalization. We conclude that this approach suffers from several flaws and that alternative social and legal strategies to deter wrongful re-identification may be preferable.
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DOI | 10.1007/s11673-017-9806-9 |
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Introduction: Sharing Data in a Medical Information Commons.Amy L. McGuire, Mary A. Majumder, Angela G. Villanueva, Jessica Bardill, Juli M. Bollinger, Eric Boerwinkle, Tania Bubela, Patricia A. Deverka, Barbara J. Evans, Nanibaa' A. Garrison, David Glazer, Melissa M. Goldstein, Henry T. Greely, Scott D. Kahn, Bartha M. Knoppers, Barbara A. Koenig, J. Mark Lambright, John E. Mattison, Christopher O'Donnell, Arti K. Rai, Laura L. Rodriguez, Tania Simoncelli, Sharon F. Terry, Adrian M. Thorogood, Michael S. Watson, John T. Wilbanks & Robert Cook-Deegan - 2019 - Journal of Law, Medicine and Ethics 47 (1):12-20.
Ethics and Epistemology of Big Data.Ian Kerridge, Paul Mason & Wendy Lipworth - 2017 - Journal of Bioethical Inquiry 14 (4):485-488.
Sharing Precision Medicine Data with Private Industry: Outcomes of a Citizens’ Jury in Singapore.Annette Braunack-Mayer, Chris Degeling, Stacy Carter, Ainsley J. Newson, E. Shyong Tai, Vicki Xafis, G. Owen Schaefer, Andrew Lau, Serene Ong, Hui Jin Toh, Tamra Lysaght & Angela Ballantyne - 2022 - Big Data and Society 9 (1).
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