Public Preferences for Digital Health Data Sharing: Discrete Choice Experiment Study in 12 European Countries.

BACKGROUND: With new technologies, health data can be collected in a variety of different clinical, research, and public health contexts, and then can be used for a range of new purposes. Establishing the public's views about digital health data sharing is essential for policy makers to develop effective harmonization initiatives for digital health data governance at the European level. OBJECTIVE: This study investigated public preferences for digital health data sharing. METHODS: A discrete choice experiment survey was administered to a sample of European residents in 12 European countries (Austria, Denmark, France, Germany, Iceland, Ireland, Italy, the Netherlands, Norway, Spain, Sweden, and the United Kingdom) from August 2020 to August 2021. Respondents answered whether hypothetical situations of data sharing were acceptable for them. Each hypothetical scenario was defined by 5 attributes ("data collector," "data user," "reason for data use," "information on data sharing and consent," and "availability of review process"), which had 3 to 4 attribute levels each. A latent class model was run across the whole data set and separately for different European regions (Northern, Central, and Southern Europe). Attribute relative importance was calculated for each latent class's pooled and regional data sets. RESULTS: A total of 5015 completed surveys were analyzed. In general, the most important attribute for respondents was the availability of information and consent during health data sharing. In the latent class model, 4 classes of preference patterns were identified. While respondents in 2 classes strongly expressed their preferences for data sharing with opposing positions, respondents in the other 2 classes preferred not to share their data, but attribute levels of the situation could have had an impact on their preferences. Respondents generally found the following to be the most acceptable: a national authority or academic research project as the data user; being informed and asked to consent; and a review process for data transfer and use, or transfer only. On the other hand, collection of their data by a technological company and data use for commercial communication were the least acceptable. There was preference heterogeneity across Europe and within European regions. CONCLUSIONS: This study showed the importance of transparency in data use and oversight of health-related data sharing for European respondents. Regional and intraregional preference heterogeneity for "data collector," "data user," "reason," "type of consent," and "review" calls for governance solutions that would grant data subjects the ability to control their digital health data being shared within different contexts. These results suggest that the use of data without consent will demand weighty and exceptional reasons. An interactive and dynamic informed consent model combined with oversight mechanisms may be a solution for policy initiatives aiming to harmonize health data use across Europe.

Population curation: The construction of mutual obligation between individual and state in Danish precision medicine.

How do precision medicine initiatives (re)organize relations between individuals and populations? In this article, we investigate how the curation of national genomic populations enacts communities and, in so doing, constructs mutual obligation between individuals and the state. Drawing on ethnographic fieldwork in the Danish National Genome Center (DNGC), we show how members of advisory bodies negotiated the inclusion criteria for two different genomic populations: a patient genome population and an envisioned 'Danish' reference genome population. The patient genome population was curated through a politics of inclusion, of as many genomes as possible, whereas the reference genome was to be curated through a politics of exclusion, to include only the genomes of 'ethnic' Danes. These two data populations configure differently the community of 'Danish patients' who might benefit from precision medicine, and thereby prescribe different moral continuities between person, state, and territory. We argue that the DNGC's patient genome population reinforces reciprocal relations of obligations and responsibility between the Danish welfare state and all individuals, while the proposed Danish reference genome population privileges the state's commitment to individuals with biographical-territorial belonging to the nation-state. Drawing on scholarship on social and health citizenship, as well as data solidarity in the Nordics, the discussion shows how population curation in national precision medicine initiatives might both construct and stratify political obligation. Whereas STS scholarship has previously deconstructed the concept of 'population', in the context of the troubling and violent effects of the management of human populations, we point to the importance of population curation as a vehicle for making the individual legible as part of a community to which the state is responsible and for which it is committed to care.

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

Digital health data are seen as valuable resources for the development of better and more efficient treatments, for instance through personalised medicine. However, health data are information about individuals who hold opinions and can challenge how data about them are used. Therefore it is important to understand public discussions around reuse of digital health data. Social media have been heralded as enabling new forms of public engagement and as a place to study social issues. In this paper, we study a public debate on Twitter about personalised medicine. We explore who participates in discussions about personalised medicine on Twitter and what they tweet about. Based on user-generated biographies we categorise users as having a 'Professional interest in personalised medicine' or as 'Private' users. We describe how users within the field tweet about the promises of personalised medicine, while users unaffiliated with the field tweet about the concrete realisation of these ambitions in the form of a new infrastructure and express concerns about the conditions for the implementation. Our study serves to remind people interested in public opinion that Twitter is a platform used for multiple purposes by different actors and not simply a bottom-up democratic forum. This study contributes with insights relevant to policymakers wishing to expand infrastructures for reuse of health data. First, by providing insights into what is discussed about health data reuse. Second, by exploring how Twitter can be used as a platform to study public discussions about reuse of health data.

Data authority: Public debate about personalized medicine in Denmark.

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.

A review of attitudes towards the reuse of health data among people in the European Union: The primacy of purpose and the common good.

Health data are used for still more purposes, and policies are enacted to facilitate data reuse within the European Union. This literature synthesis explores attitudes among people living in the European Union towards the use of health data for purposes other than treatment. Our findings indicate that while a majority hold positive attitudes towards the use of health data for multiple purposes, the positive attitudes are typically conditional on the expectation that data will be used to further the common good. Concerns evolve around the commercialisation of data, data security and the use of data against the interests of the people providing the data. Studies of these issues are limited geographically as well as in scope. We therefore identify a need for cross-national exploration of attitudes among people living in the European Union to inform future policies in health data governance.

From motivation to acceptability: a survey of public attitudes towards organ donation in Denmark.

BACKGROUND: Over the past three decades, public attitudes to organ donation have been a subject of numerous studies focusing on donor motivation. Here, we present a fresh approach. We suggest focusing on public acceptability instead of motivation. The point is to understand public attitudes well enough to avoid risking public support for organ transplantation. We conducted the study in Denmark because there have been significant developments in public attitudes to organ donation in this country. In the 1990s, Denmark was a country with very low public support for organ donation and Denmark was the last country in Europe to introduce brain death as a legal criterion of death, whereas today Eurobarometer surveys rate Denmark as one of the European countries with the highest support for deceased organ donation from brain dead donors. METHODS: We conducted a telephone survey in Denmark (N = 1195). A questionnaire was developed on the basis of preceding qualitative studies and pilot testing and included reuse of one item from earlier surveys to facilitate historical comparison. The analysis of the data was carried out using IBM SPSS Statistics 22 and focused on descriptive statistics. RESULTS: A clear majority of 91.9 % are positive or very positive towards organ donation; 85.8 % like the idea of their body being used after their death, 85.0 % is willing to donate their own organs, 82.1 % to donate their tissue and only 2.3 % find that too much has been done to promote organ donation. There is limited support for monetary incentives for organ donation (5.8 %) and presumed consent (30.4 %), while a majority (63.9 %) supports making it mandatory to register a personal decision. Religious self-identification has limited impact on attitudes. CONCLUSIONS: We can identify a shift over the past three decades from marked opposition to organ transplantation to strong support as well as a pattern in the contemporary public attitudes, which can help explain what is central to public acceptability: self-determination. Policies fostering choice are met with a majority of positive attitudes, while presumed consent and monetary incentives are met with more negative attitudes. Our approach calls for comparative studies in other countries to generate a better overall understanding of the conditions of acceptability, which need to be in place to ensure the long-term social robustness of organ donation and thereby safeguard this important medical technology.