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Preserving privacy in European health research: The case of synthetic data
Journal of Data Protection & Privacy,
6
(3),
295-306
(2024)
Abstract
This paper investigates the role of synthetic data in the field of health research, with a particular focus on data protection. More specifically, it aims at clarifying whether this new technology represents an alternative to more classic anonymisation techniques. The analysis is construed on a review of the existing literature; nevertheless, it is noted that the majority of contributions focuses on the technical aspects of synthetic data and machine learning, while less legal studies have been conducted on this topic. The outcome of this study outlines that, by using synthetic data which respects the ‘privacy by design’ principle (although the identifiability risk still exists), researchers are no longer occupied by the question of re-identification but rather focus on the quality and utility of synthetic datasets. After examining the different solutions applied to enshrine privacy, however, this paper concludes there is a necessity for regulating the use of artificially generated data for research and machine learning purposes.
Keywords: data protection; synthetic data; anonymisation; identifiability; machine learning
The full article is available to subscribers to the journal.
Author's Biography
Sara Bonomi is a trilingual legal counsel, specialising in intellectual property (IP) and data protection law. Having acquired previous international experience in the private sector within a global consultancy firm, as well as in-house counsel in the research and development field, she now focuses on providing counsel in data protection at a global level within Atos International. A firm believer in the importance of continuous self-improvement, she recently became IAPP certified (CIPP/E) and participates in the legal community as a contributor to one of the leading Legaltech journals in Italy, Cyberlaws, as well as organising members within the Luxembourg chapter of the international association, Legal Hackers. Sara completed her legal studies cum laude at the University of Turin (Italy), with a specialisation in IP and international business law.
Georgia Vasileiadou Georgia is a Greek qualified lawyer at the Court of First Instance of Thessaloniki and works as an intellectual property and data protection legal adviser at the Luxembourg Institute of Science and Technology. Previously, Georgia has been a researcher at the Centre of International and European Economic Law in Greece and a freelance lawyer. She holds an LL.M. in business law and corporate social responsibility from Paris-Dauphine University PSL (France) and an LL.M in commercial arbitration from Democritus University of Thrace (Greece). She has published several articles and case law annotations in the field of EU commercial and IT law and was a contributing writer to the Hellenic Review of European Law from 2018 to 2023. She speaks English and French fluently.
