Data authority: Public debate about personalized medicine in Denmark

Abstract

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.

Who tweets what about personalised medicine? Promises and concerns from Twitter discussions in Denmark

“… 22 Concerns about the infrastructure set up to facilitate personalised medicine, potential use of genetic information for purposes other than research or treatment, concerns related to data security and the risk of privacy breaches, and not least tweets about design of a consent or opt-out, are also prevalent on Twitter. These are topics known to be discussed in relation to sharing of health data 5 , 52 , 65 and more specifically in relation to the implementation of personalised medicine. 23 Our study suggests that Twitter can be used as a platform for policymakers to gain insights into how these topics are perceived by people not directly affiliated with the implementation of personalised medicine.…”

“…51 The search query was developed through an iterative process of adding and removing potential search terms. The initial search query was inspired by the search terms used by Skovgaard and Hoeyer (2022) 52 in their study of public debate in news media about personalised medicine. We collected tweets using their search terms and studied the most frequent hashtag used in the dataset.…”

Putting data to work for precision medicine

“…In Denmark, regulation of who should be able to access health data, and for which purposes, is intensively debated, which has stimulated regulatory changes. 5 A work package in OSCAR aims at providing clarity on the rules and regulations for data sharing as well as stimulating legislative processes to enable better use of health data for research purposes.…”

Citizen-Person: The “Me” in the “We” in Danish Precision Medicine

“…This model treated genomic analysis as equivalent to any other medical test only requiring oral consent from the patient. The law-making process provoked an extraordinary number of critical responses (seventy-seven questions) from organizations and politicians (Cathaoir 2019) and an intense public debate in Danish news media through most of 2018 (Skovgaard and Hoeyer 2022). Given that significant amounts of CPR-based data are seamlessly collected and mobilized in welfare state policies, and that this appears unproblematic to Danes, we were curious about what the collection and storing of genomes in the NGC evoked that seemed so worrying for people.…”

“…In this way, the discussion of the genome as a possession of the citizen-person was interwoven with discussions of how the state would protect this possession, and whether or not the automatic storage and use of the genome constituted an illegitimate act. Consequently, the concerns pertain to both individual possessions—security, privacy, and individual consent—and to collective endeavors, such as whether or not the resource will benefit the collective (see also Skovgaard and Hoeyer 2022).…”