Data authority: Public debate about personalized medicine in Denmark

Publikation: Bidrag til tidsskriftTidsskriftartikelForskningfagfællebedømt


  • Fulltext

    Forlagets udgivne version, 256 KB, PDF-dokument

Personalized medicine has generated massive investments in data integration initiatives and stimulated new flows of health data among multiple actors. Such flows raise questions as to who should be able to access data, for which purposes, and how this access and use should be regulated. We suggest thinking of these questions as matters of ‘data authority’: who can legitimately do what with health data? In this article, we analyze a public debate developing in written media about personalized medicine to understand negotiations of data authority. We demonstrate how the debate creates no consensus and yet seems to stimulate selective regulatory changes. The changes are selective in the sense that they focus on the protection of autonomy but fail to address concerns about, for example, commercial interests. We argue that data authority rests on enduring conflict and that this conflict can be seen as constitutive for personalized medicine as a sociotechnical phenomenon.

TidsskriftPublic Understanding of Science
Udgave nummer5
Sider (fra-til)590-607
Antal sider18
StatusUdgivet - 2022

Bibliografisk note

Funding Information:
The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: The authors received funding from the Carlsberg Foundation (CF17-0016) and from the European Research Council (ERC) under the European Union’s Horizon 2020 research and innovation program (grant agreement number 682110).

Publisher Copyright:
© The Author(s) 2022.

Antal downloads er baseret på statistik fra Google Scholar og

Ingen data tilgængelig

ID: 304359619