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The life and death of confidentiality: a historical analysis of the flows of patient information.

Authors
  • Wadmann, Sarah1
  • Hartlev, Mette2
  • Hoeyer, Klaus3
  • 1 The Danish Center for Social Science Research - VIVE, Herluf Trolles Gade 11, 1052 Copenhagen, Denmark. , (Denmark)
  • 2 Centre for Legal Studies in Welfare and Market - WELMA, Faculty of Law, University of Copenhagen, Copenhagen, Denmark. , (Denmark)
  • 3 The Centre for Medical Science and Technology Studies - MeST, Department of Public Health, University of Copenhagen, Copenhagen, Denmark. , (Denmark)
Type
Published Article
Journal
BioSocieties
Publication Date
Jan 01, 2023
Volume
18
Issue
2
Pages
282–307
Identifiers
DOI: 10.1057/s41292-021-00269-x
PMID: 35126615
Source
Medline
Keywords
Language
English
License
Unknown

Abstract

Health data can contain sensitive information. People who consult a doctor seek help on issues that matter to them: they typically expect some form of confidentiality. However, the notion and practices of confidentiality have changed dramatically over time. In this article, we trace the history of confidentiality in the Danish healthcare system, which has one of the world's most integrated patient information infrastructures. Building on an analysis of legal and political documents dating back to the late seventeenth century, we show that confidentiality originated as a social phenomenon that helped build trust in healthcare professionals and gradually developed into an idiom of citizens rights. Lately, confidentiality has given way to more technocratic forms of data protection. As the political, legal and technological reality, which the idea of confidentiality once referred to, has radically changed, we argue that confidentiality has become what Ulrik Beck has called a 'zombie category'-a notion that lives on even if its content has passed away. If confidentiality has become a zombie concept, we suggest it is time to discuss what may take its place so that patient interests are protected in the current political economy of health data. © The Author(s) 2022.

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