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. 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.

Shortcut to success? Negotiating genetic uniqueness in global biomedicine.

Since the sequencing of the human genome, as well as the completion of the first Human Genome Diversity Project, the benefits of studying one human population over another has been an ongoing debate relating to the replicability of findings in other populations. The leveraging of specific populations into research markets has made headlines in cases such as deCode in Iceland, Quebec Founder Population, and Generation Scotland. In such cases, researchers and policy makers have used the genetic and historical uniqueness of their populations to attract scientific, commercial and political interest. In this article, we explore how in countries with population isolates, such as Finland, the researchers balance considerations relating to the generalization and replicability of findings in small yet unique research populations to global biomedical research interests. This highlights challenges related to forms of competition associated with genetics research markets, as well as what counts as the 'right' population for genetic research.

Challenges for the Sustainability of University-Run Biobanks.

Most university biobanks begin like other university research projects, that is, with an idea conceived by an individual researcher in pursuit of his/her own research interests, publications, funding, and career. Some biobanks, however, come to have scientific value that goes beyond the projects that were initially responsible for the collection of the samples and data they contain. Such value may derive from among other things the uniqueness of the samples in terms of their sheer volume, the quality of the samples, the ability to link the samples with information retrieved in disease registries, or the fact that the samples represent very rare diseases. This article focuses on biobanks of this kind, and the special obligations that publicly funded universities have to ensure the sustainability of biobanks with continued scientific value. We argue that universities should adopt policies to deal with the various, diverse issues which may arise during the lifecycle of a biobank. The policies should be flexible, accommodate the freedoms of individual researchers, and reflect the multifaceted nature of biobanks. Yet they should be specific enough to provide guidance and robust enough to safeguard legal norms and ethical values. The article sets out concrete recommendations which universities should consider and act upon.

Ethical sharing of health data in online platforms - which values should be considered?

Intensified and extensive data production and data storage are characteristics of contemporary western societies. Health data sharing is increasing with the growth of Information and Communication Technology (ICT) platforms devoted to the collection of personal health and genomic data. However, the sensitive and personal nature of health data poses ethical challenges when data is disclosed and shared even if for scientific research purposes.With this in mind, the Science and Values Working Group of the COST Action CHIP ME 'Citizen's Health through public-private Initiatives: Public health, Market and Ethical perspectives' (IS 1303) identified six core values they considered to be essential for the ethical sharing of health data using ICT platforms. We believe that using this ethical framework will promote respectful scientific practices in order to maintain individuals' trust in research.We use these values to analyse five ICT platforms and explore how emerging data sharing platforms are reconfiguring the data sharing experience from a range of perspectives. We discuss which types of values, rights and responsibilities they entail and enshrine within their philosophy or outlook on what it means to share personal health information. Through this discussion we address issues of the design and the development process of personal health data and patient-oriented infrastructures, as well as new forms of technologically-mediated empowerment.

Tensions Between Policy and Practice in Finnish Biobank Legislation.

In 2012 a new biobanking law came into effect in Finland which, according to some, is one of the most comprehensive and broad national biobanking legislations in the world to date. The law covers both clinical and research collections and provides institutions with great flexibility in terms of transferring existing collections into a biobank. The law also includes provisions for individuals whose samples are stored in the biobank to request information regarding the studies in which the sample has been used. However, this provision also compels biobanks to provide an account of the significance of the research findings to their individual health. This legal provision has created tension between policy and practice in that most biobanks will struggle to interpret and apply this provision in practice. The relationship between the rights and needs to conduct research using biobank material and individual rights of access is sometimes unclear and fraught with interpretational challenges. The derivation of national interpretations of European Directives and Conventions gives rise to what I call interpretive regulatory dissonance. This is expected to be a challenge for harmonizing European and global biobanking activities in the future.

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. This bio-objectification process is problematic in relation to policy aspirations ascribed to biobanking engagement since it gives rise to reified notions of different populations.

[Attitudes towards biobanks among Finnish people]. / Miten suomalaiset suhtautuvat biopankkeihin?

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. The future challenges of biobanks include maintenance of transparency in the long-term and returning data to all parties. Because public opinion may easily have an effect to one's will to participate and support the biobanks, maintenance of long range biobank activities and of trust will be essential.

Attitudes towards biomedical use of tissue sample collections, consent, and biobanks among Finns.

AIMS: To ascertain the attitudes towards the use of existing diagnostic and research samples, the setting up of a national biobank, and different types of informed consent among Finns. METHOD: A population survey of 2,400 randomly selected Finns aged 24-65 was conducted at the beginning of 2007. RESULTS: A total of 1,195 responses (50%) were received after one reminder. Of the respondents, 83% said that they had little or no knowledge of what biobanks were. Despite this, 77% regarded the setting up of a national biobank in a positive light. One third (34%) would not attach any conditions on their consent, while 42% said that it was important to regain consent when the new study contains diverging steps. One third (30%) wanted consent to be regained for every new research project, and 44% would like to decide what type of research their samples would be used for if they were included in a national biobank. One third of both men and women approved of the use of their samples in research involving private enterprises. CONCLUSIONS: In general, Finns were positive toward the setting up of a national biobank, as well as public-private partnerships, even though they considered their knowledge of biobanking to be limited. This, however, did not mean that they were indifferent to the use of their samples, but most wanted the ability to control how their samples are used.

Re-examining medical modernization: framing the public in Finnish biomedical research policy.

Despite recent evidence that suggests that knowledge production within the medical community is increasingly based on knowledge-making coalitions or what some have called the co-production of knowledge, there remains a strong expert led policy agenda in many countries in relation to human genome research. This article reports on the role of experts in defining the scope of discussion in relation to the biomedical use of human tissue sample collections or biobanks in Finland using the case of the Genome Information Center. It is argued that the rhetorical strategies should not be understood simply as subversive tactics, but rather as ways of engaging the public within particular contexts of creating commercial expectations and visions which are easier to negotiate from a policy perspective.

Locating tissue collections in tissue economies--deriving value from biomedical research.

This paper examines diverging notions of value in the use of tissue sample collections and other information resources using a case study of hereditary colorectal cancer research in Finland. Recent science and technology policies that emphasize the production of commercial value derived from tissue sample collections are challenged by varying conceptions of value, as well as structural factors that relate to the combination of different public population information systems in the Finnish research system. Such challenges reflect a tension in the economic aspirations of the ideology of the knowledge society in relation to the goals of national health care policies, as well as the role of the state as a mediator of knowledge production and commercial development.