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Nordic welfare states have well institutionalised practises of gathering health and social wellbeing data from their citizens. The establishment of population registers coincided with the building of welfare state institutions and a social contract relying on solidarity. During the last decade, the significance of Nordic registers and health data has increased and they have become sources of economic value. Recent policies expect registers, health data and biobanks to attract international investments, making Nordic countries world-leaders in the global health data economy. In this article we question the conditions and boundaries of solidarity in the emerging data-driven health economy. We argue that the logics of welfare state and data-driven health economy create a paradox – the data economy is not possible without the welfare state data regime, but the logic of data-driven health economy contradicts the value bases of the welfare state data regime and therefore the justifications for data gathering and use become questionable. We develop the concept of solidarization to describe the process by which individuals are expected to behave in a solidaristic way to support data gathering and related policy processes. We demonstrate the solidarity paradox through a recent legislative and data infrastructure reform in Finland and discuss it in relation to academic literature on solidarity. [ABSTRACT FROM AUTHOR]

Personalized medicine has become a central focus of health and innovation policies in many countries. It is a complex policy field which, in the pursuit of both health and wealth, brings together technology, new data use, and medical care. The aim of this paper is to analyze how the notion of personalized medicine has evolved, and what publics are implied in the political mobilization of the concept. We answer these questions based on a document analysis of Danish strategy papers in the period 2014–2021 and expert interviews. We identify different strategy actors driving the process, shifts in topics during the strategy process, as well as different imaginaries of the public. We argue that each group of strategy actors act with a particular public in mind and that these influence how personalized medicine is envisioned. If the relationship between strategy development and the imagined publics remains unknown, it can pose a democratic problem. [ABSTRACT FROM AUTHOR]

Finnish biobanks have started to recruit children. The national supervising authority has emphasized the centrality of providing children with age-appropriate information. We analyzed one such campaign. We argue that by simplifying the complex socio-technical arrangements of biobanking with the introduction of a new metaphor-like concept, "Bio-me," the campaign presents a misleading and reductionist picture of data-driven biomedicine and biobank participation. First, the Bio-me character seems to bear similarities to the seventeenth-century explanations of embryological development. Second, the focus in the campaign is on biological material while crucial connections to different sorts of data are ignored. Third, we point to the absence of verbal references to genes and DNA, although the prevailing visualization comprises the double helix. We argue that the campaign has potential to contribute to public misunderstanding of science by introducing a new term that has little connection to actual biology or scientific practices it tries to promote. [ABSTRACT FROM AUTHOR]

This article presents results from a Finnish focus group's study conducted among participants of a project called GeneRISK, in which the participants received a personal risk score for having a cardiovascular event based on genetic analysis, lifestyle and laboratory results. In the discussions, interpretations of the genetic risk score and its meaning were incorporated into personal narratives of health and illness. We argue that instead of serving as an explanation for health and illness, which can help guide people's lives and choices, the genetic risk information became an object of explanation. Therefore, the risk information did not create new conceptions of personal risk, nor did it generate enough power to push people to change their lifestyles. Instead, the risk information was used to strengthen the existing impression of personal risk and the narrative of personal health and illness. [ABSTRACT FROM AUTHOR]

In Finland, as well as all over the globe, great weight is put on the possibilities of large data collections and 'big data' for generating economic growth, enhancing medical research, and boosting health and wellbeing in totally new ways. This massive data gathering and usage is justified by the moral principle of improving health. The imperative of health thus legitimizes data collection, new infrastructures and innovation policy. It is also supported by the rhetoric of health promotion. New arrangements in health research and innovations in the health sector are justified, as they produce health, while the moral principle of health also obligates individual persons to pursue healthy lifestyles and become healthy citizens. I examine how, in this context of Finnish data-driven medicine, arguments related to privacy and autonomy become silenced when contrasted with the moral principle of health. [ABSTRACT FROM AUTHOR]

Background: Increasing numbers of blood donors are recruited to participate in biomedical research. As blood services depend on voluntary donors, successful recruitment calls for a better understanding of donors' expectations and attitudes toward the use of samples in research.Study Design and Methods: Sixty-one semistructured interviews were conducted with blood donors at eight Finnish Red Cross Blood Service donation sites in Finland. The 10- to 30-minute interviews included open-ended questions about donors' views on blood donation for patients and for biomedical research. Central motives to donate blood for patients were identified against which views on research use were compared to see how these reflections differed.Results: Six central motives for donating blood for patients were identified among donors. The interviewees were, in general, willing to donate blood for research, but considered research donation more likely if it could be easily integrated into their usual blood donation habits. Biomedical research was perceived as important but its social benefits were more abstract than a direct help to patients.Conclusions: Familiarity and reciprocity were key to the relationship between the blood service and blood donors. Donation for research introduces a new, more complex context to blood donation. Challenge to recognize concrete outcomes and benefits of donation may affect willingness to donate for research. Transparent communication of the role of the blood service in research and of the beneficiaries of the research is essential in maintaining trust. These results will help blood services in their planning to recruit blood donors for research projects. [ABSTRACT FROM AUTHOR]

Some authors have noted that in biobank research participants may be guided by what is called therapeutic misconception, whereby participants attribute therapeutic intent to research procedures. This article argues that the notion of therapeutic misconception is increasingly less justified when evaluating biobanks. We present four examples taken from recent developments in biobanking to argue why the notion of therapeutic misconception is problematic in that biobanking practices are increasingly seeking to bridge research and treatment in different ways. In this article we explore examples where the boundary between research and treatment become increasingly blurred, as well as the contextual significance of healthcare systems and their prevailing ideologies in healthcare management. We argue that biobanking practices are challenging the use value, as well as the philosophical and ethical underpinnings for the need to separate research and treatment, and thus the notion of therapeutic misconception in the first place. We call this tension between research and treatment ambivalent research advancement to highlight the difficulties that various actors have in managing such shifts within the healthcare-research systems. [ABSTRACT FROM AUTHOR]

Social studies on biobanking have traditionally focused on public engagement, that is, engagement with donors, patients and the general public as an important factor of sustainability. In this article, we claim that, in order to fully understand the way biobanks work, it is necessary to pay attention to a number of other actors, which have an equal, if not greater, impact on their practices and strategies. This means taking a broadened approach to biobank engagement. By using data collected from interviews with different biobank experts based in five different countries (UK, Canada, Finland, Spain and Iceland), we identify seven communities, including the public, that emerge as relevant. Such relationships condition the way biobanks develop, act and plan. The discussion illustrates how the relationships with those seven communities are articulated. We conclude that there is a need for a broadened approach to biobank engagement in order to understand biobank sustainability. [ABSTRACT FROM PUBLISHER]

This article examines public perceptions of biobanks in Europe using a multi-method approach combining quantitative and qualitative data. It is shown that public support for biobanks in Europe is variable and dependent on a range of interconnected factors: people's engagement with biobanks; concerns about privacy and data security, and trust in the socio-political system, key actors and institutions involved in biobanks. We argue that the biobank community needs to acknowledge the impact of these factors if they are to successfully develop and integrate biobanks at a pan-European level. [ABSTRACT FROM AUTHOR]

Recent trends in biobanking indicate that the practices associated with the collection and use of human tissue samples and related health information are increasingly becoming premised on networks of biobanks. These networks and partnerships often involve international collaborations, as well as public–private partnerships. This article reports on the results of a study of people's attitudes towards biobanking and the biomedical use of tissue samples in Finland. Three approaches were used to study these attitudes: a population-based survey, focus group interviews among members of patient organizations and short interviews with research participants. In particular, we look at the attitudes of respondents in these three studies towards the use of tissue samples and use them as a catalyst to discuss two dimensions of biomedical research: public/private and domestic/international. Our discussion highlights how notions of value related to the use of tissue samples vary and provide contrasting perspectives and ambiguity that people may have towards various types of research partnerships and the benefits that may arise from them. [ABSTRACT FROM PUBLISHER]

Deals with the studies of difference universities about the relationship between research and education. Arguments on policy development and the increasing emphasis on commercialization and profitability of university activities; Concept of connection between research and education; Finding of the studies conducted.