REVIEW article
Front. Genet.
Sec. ELSI in Science and Genetics
Volume 16 - 2025 | doi: 10.3389/fgene.2025.1629386
A decade of research on genetic privacy: The Findings of the GetPreCiSe Center at Vanderbilt University
Provisionally accepted
- 1Vanderbilt Law School, Nashville, TN, United States
- 2Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, United States
- 3Vanderbilt University, Department of English, Nashville, TN, United States
- 4Division of Medical Ethics, NYU Grossman School of Medicine, New York, NY, United States
- 5Department of Biomedical Informatics, Vanderbilt University Medical Center, Nashville, United States
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Research carried out by Vanderbilt University’s and Medical Center's federally-funded transdisciplinary, highly interactive GetPreCiSe Center in Excellence for ELSI research on genomic privacy, involving over 40 scholars across computer and social sciences, law, and the humanities, is summarized by dividing the work into five categories: (1) the nature of risks posed by collection of genetic data; (2) legal and scientific methods of minimizing those risks; (3) methods of safely increasing the scope of genetic databases; (4) public perceptions of genetic privacy; and (5) cultural depictions of genetic privacy. Several themes run through this research. While this research shows that the risk of unauthorized re-identification is often over-stated, various concerns are identified. Several technical and legal methods for reducing that risk are described, most of which focus not on collection of the data, but rather on regulating data security, access, and use once it is collected. Additionally, empirical data were collected to assess the public’s views on genomic privacy. This research indicated that public concern about genetic privacy may be no greater than concern about financial and other types of privacy and often varies depending on the context in which the information is accessed. More generally, the research suggested that privacy experts may underestimate the extent to which the public values utility over privacy risk. Finally, both survey data and research on media depictions about genetic science found that worry about genetic research and its impact on privacy and other values appear to grow as the time horizon lengthens and varies significantly based on demography; in particular, minority groups defined by ethnicity and sexual identity are more anxious about genetic disclosures than other groups. Research looking at fan fiction, blog posts, and online book reviews also found that these depictions can have a direct impact on public attitudes about genetic science.
Keywords: Genetic Privacy, Transdisciplinary, Law, Ethics, Sociotechnical, media
Received: 15 May 2025; Accepted: 18 Jul 2025.
Copyright: © 2025 Slobogin, Tellis, Clayton, Clayton, Eilmus and Malin. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
* Correspondence: Ellen Wright Clayton, Center for Biomedical Ethics and Society, Vanderbilt University Medical Center, Nashville, United States
Disclaimer: All claims expressed in this article are solely those of the authors and do not necessarily represent those of their affiliated organizations, or those of the publisher, the editors and the reviewers. Any product that may be evaluated in this article or claim that may be made by its manufacturer is not guaranteed or endorsed by the publisher.