Scientific article
Review
OA Policy
English

Use and Understanding of Anonymization and De-Identification in the Biomedical Literature: Scoping Review

Published inJournal of Medical Internet Research, vol. 21, no. 5, e13484
Publication date2019
Abstract

The secondary use of health data is central to biomedical research in the era of data science and precision medicine. National and international initiatives, such as the Global Open Findable, Accessible, Interoperable, and Reusable (GO FAIR) initiative, are supporting this approach in different ways (eg, making the sharing of research data mandatory or improving the legal and ethical frameworks). Preserving patients' privacy is crucial in this context. De-identification and anonymization are the two most common terms used to refer to the technical approaches that protect privacy and facilitate the secondary use of health data. However, it is difficult to find a consensus on the definitions of the concepts or on the reliability of the techniques used to apply them. A comprehensive review is needed to better understand the domain, its capabilities, its challenges, and the ratio of risk between the data subjects' privacy on one side, and the benefit of scientific advances on the other.

Keywords
  • Anonymization
  • Anonymisation
  • De-identification
  • Deidentification
  • Pseudonymization
  • Privacy
  • Confidentiality
  • Secondary use
  • Data protection
  • Scoping review
Citation (ISO format)
CHEVRIER, Raphaël et al. Use and Understanding of Anonymization and De-Identification in the Biomedical Literature: Scoping Review. In: Journal of Medical Internet Research, 2019, vol. 21, n° 5, p. e13484. doi: 10.2196/13484
Main files (1)
Article (Published version)
Identifiers
Additional URL for this publicationhttps://www.jmir.org/2019/5/e13484/
Journal ISSN1438-8871
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