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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]

Science and science policy are characterised by expectations. These expectations—as in the field of biomedicine—may be related to describing novel findings, their use in curing diseases or their economic benefits. Previous research has shown that expectations are often communicated with the help of metaphors. In this article, we take a closer look at one metaphor—‘closing window of opportunity’—and examine how it frames discussions about policy and regulatory change in biomedicine through the lenses of urgency and national unity. A key component of the generative metaphor of a ‘closing window’ is the focus on limited time and a sense of urgency related to the creation of an enabling environment for biomedical research and innovations. We focus on two key elements of this framing: international competitiveness and national unity. Moreover, drawing on urgency seems to be a standard response to the changing environment, in which the actors need to continuously guide their actions in new directions, meeting new demands posed by, for example, technological development or regulatory changes. We argue that while the metaphor of a closing window creates room for innovations and competitiveness, it is prone to silence critical discussions, for example on sustainability, responsibility and accountability. This leaves out important discussions about values, benefits and risks. With this analysis, we contribute to discussions about the sociology of (negative) expectations and generative metaphors and show how urgency can remain as a constant state of things. [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]

Biobank operations started officially in Finland in 2013 when the Biobank Act defining and regulating biobank operations came into force. Since then, ten biobanks have been established and they have started to collect new prospective samples with broad consent. The main corpus of biobank samples, however, consists of approximately 10 million "legacy samples". These are old diagnostic or research samples that were transferred to biobanks in accordance with the Biobank Act. The focus of this article is on ambiguities concerning these legacy samples and their transfer in terms of legality, human rights, autonomy, and social sustainability. We analyse the Finnish biobank operations in the context of international regulation, such as the European Convention of Human Rights, the Oviedo Convention, European Charter of Fundamental Rights, the GDPR, and EU Clinical Trials Regulation, and show that the practice of using legacy samples is at times problematic in relation to this regulatory framework. We argue that the prevailing interpretations of these regulations as translated into the Finnish biobank practices undermine the autonomy of individuals by not giving individuals a right to consent or an actionable right to opt-out of the transfer of these legacy samples to the biobank. This is due to the fact that individuals are not given effective notification of such transfers. Thus, issues regarding the legal status of the biobank samples and the social sustainability of biobank operations remain a challenge for biobanks in Finland despite governmental efforts to create pioneering, comprehensive, and enabling legislation. [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]

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]

Regardless, the argument made in our paper still holds: even though Finnish biobanks are presented in the public as autonomy preserving consent based sample collections, they are in practice based upon the transfer of old diagnostic collections (approx. 10 mil. samples) from hospital districts and research cohorts to the biobanks. For diagnostic collections of hospital districts there is now a need to inform the data subjects of eventual further uses of samples at the time of collecting the samples according to article 13 of the GDPR. [Extracted from the article]

According to surveys and opinion polls, citizens in Nordic welfare societies have positive, supportive attitudes towards medical research and biobanking. In Finland, it was expected that this would result in the active biobank participation of patients and citizens. Indeed, public support has been rhetorically utilised as a unique societal factor and advantage in the promotion of Finnish biobanks, underlining the potential Finland offers for the international biomedical enterprise. In this paper, we critically analyse the use of notions such as 'willing population' and 'engaged people' in the promotion and legitimation of biobanking. First, there is a seeming contradiction between positive attitudes and actual participation rates, as biobanks have faced unexpected challenges in participant recruitment during the first years of their operations. As a result, the concept of a willing population was redirected to problematise the necessity of informed consent. Second, we question whether it is even meaningful to assume the existence of an informed and engaged population with regard to biobanking. Therefore, we suggest that it is problematic to talk about a willing population at the same time as the relevance of the informed consent system is being questioned by biobank actors and policy makers. We analyse this tension in relation to existing data on Finnish people's attitudes, pointing out that positive, supportive views do not directly transform into high participation rates; nor do they justify the claims of policy makers and biobank proponents that people are willing to participate, when in fact surveys report that people know very little about biobanks. [ABSTRACT FROM AUTHOR]

A correction to the article "Publics and biobanks: Pan-European diversity and the challenge of responsible innovation" that was published in the June 6, 2012 issue is presented.