A solidarity paradox - welfare state data in global health data economy.

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.

"Here comes Bio-me": An analysis of a biobank campaign targeted at children.

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.

'Well, I knew this already' - explaining personal genetic risk information through narrative meaning-making.

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.

Legacy samples in Finnish biobanks: social and legal issues related to the transfer of old sample collections into biobanks.

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".

Attitudes of blood donors to their sample and data donation for biobanking.

Modern biomedical and genetic studies require large study cohorts; blood donors have been suggested to represent an appropriate group for recruiting healthy cohorts. The Blood Service Biobank (BSB) in Finland was recently established to recruit blood donors willing to give broad biobank consent. The aim of the present study is to understand how the blood bank context influences views on donating samples and health data.

Questioning the rhetoric of a 'willing population' in Finnish biobanking.

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.

Health as the Moral Principle of Post-Genomic Society: Data-Driven Arguments Against Privacy and Autonomy.

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.

Blood donors' preferences for blood donation for biomedical research.

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.

Data systems, genomic data and expertise of doctors.

Introduction of genomic data into health care requires willingness from physicians to adopt decision support systems as well as genomic information as part of their work. In the interview study, doctors' expectations about data systems and genomic data, as well as challenges for their utilization, are brought into light. Besides technical functionality, linking of data systems and the new knowledge mediated by them for clinicians also requires that doctors understand them as part of their professional expertise and thus useful.

Constructing populations in biobanking.

This article poses the question of whether biobanking practices and standards are giving rise to the construction of populations from which various biobanking initiatives increasingly draw on for legitimacy? We argue that although recent biobanking policies encourage various forms of engagement with publics to ensure legitimacy, different biobanks conceptualize their engagement strategies very differently. We suggest that biobanks undertake a broad range of different strategies with regard to engagement. We argue that these different approaches to engagement strategies are contributing to the construction of populations, whereby specific nationalities, communities, societies, patient groups and political systems become imbued or bio-objectified with particular characteristics, such as compliant, distant, positive, commercialized or authoritarian.

[Attitudes towards biobanks among Finnish people].

Compared to other Europeans, Finns by and large have rather positive attitudes towards biobanks. However, there are many concerns and hopes about biobank activities. Knowledge on biobank operations are scarce, and more information is needed.

Publics and biobanks: Pan-European diversity and the challenge of responsible innovation.

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.