Data authority: Public debate about personalized medicine in Denmark
Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt
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Data authority : Public debate about personalized medicine in Denmark. / Skovgaard, Lea L.; Hoeyer, Klaus.
I: Public Understanding of Science, Bind 31, Nr. 5, 2022, s. 590-607.Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt
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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 -
ID: 304359619