TY - JOUR

T1 - Data authority

T2 - Public debate about personalized medicine in Denmark

AU - Skovgaard, Lea L.

AU - Hoeyer, Klaus

N1 - Publisher Copyright: © The Author(s) 2022.

PY - 2022

Y1 - 2022

N2 - 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.

AB - 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.

KW - attitudes on genetics

KW - biotechnology law

KW - health and media

KW - health policy

KW - public participation

KW - scientific controversies

U2 - 10.1177/09636625221080535

DO - 10.1177/09636625221080535

M3 - Journal article

C2 - 35380073

AN - SCOPUS:85127786916

VL - 31

SP - 590

EP - 607

JO - Public Understanding of Science

JF - Public Understanding of Science

SN - 0963-6625

IS - 5

ER -