The Nordic countries aim to have a unique place within the European and global health data economy. They have extensive nationally maintained and centralized health data records, as well as numerous biobanks where data from individuals can be connected based on personal identification numbers. Much of this phenomenon can be attributed to the emergence and development of the Nordic welfare state, where Nordic countries sought to systematically collect large amounts of population data to guide decision making and improve the health (...) and living conditions of the population. Recently, however, the so-called Nordic gold mine of data is being re-imagined in a wholly other context, where data and its ever-increasing logic of accumulation is seen as a driver for economic growth and private business development. This article explores the development of policies and strategies for health data economy in Denmark and Finland. We ask how nation states try to adjust and benefit from new pressures and opportunities to utilize their data resources in data markets. This raises questions of social sustainability in terms of states being producers, providers, and consumers of data. The data imaginaries related to emerging health data markets also provide insight into how a broad range of different data sources, ranging from hospital records and pharmacy prescriptions to biobank sample data, are brought together to enable “full-scale utilization” of health and welfare data. (shrink)

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 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’ 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. (shrink)

Machine learning platforms have emerged as a new promissory technology that some argue will revolutionize work practices across a broad range of professions, including medical care. During the past few years, IBM has been testing its Watson for Oncology platform at several oncology departments around the world. Published reports, news stories, as well as our own empirical research show that in some cases, the levels of concordance over recommended treatment protocols between the platform and human oncologists have been quite low. (...) Other studies supported by IBM claim concordance rates as high as 96%. We use the Watson for Oncology case to examine the practice of using concordance levels between tumor boards and a machine learning decision-support system as a form of evidence. We address a challenge related to the epistemic authority between oncologists on tumor boards and the Watson Oncology platform by arguing that the use of concordance levels as a form of evidence of quality or trustworthiness is problematic. Although the platform provides links to the literature from which it draws its conclusion, it obfuscates the scoring criteria that it uses to value some studies over others. In other words, the platform “black boxes” the values that are coded into its scoring system. (shrink)

In recent years, cross-national collaboration in medical research has gained increased policy attention. Policies are developed to enhance data sharing, ensure open-access, and harmonize international standards and ethics rules in order to promote access to existing resources and increase scientific output. In tandem with this promotion of data sharing, numerous ethics policies are developed to control data flows and protect privacy and confidentiality. Both sets of policy making, however, pay limited attention to the moral decisions and social ties enacted in (...) the everyday routines of scientific work. This paper takes its point of departure in the practices of a Danish laboratory with great experience in international collaboration regarding genetic research. We focus on a simple query, what makes genetic material and health data flow, and which hopes and concerns travel along with them? We explore what we call the flows, the nonflows, and the overflows of material and information, and we document the work producing the flows of health data and biomaterial. We call this work “ethics work” and argue that it is crucial for data sharing though it is rarely articulated in ethics policies, remains inadequately funded, and lacks acknowledgment in policies promoting international data sharing. (shrink)

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. (shrink)

The purpose of the research was to study Finnish people's attitudes towards biomedical research and whether the research sponsor makes a difference to those attitudes. A survey questionnaire was sent to a random sample of 25-64 years old. Respondents had a positive attitude towards biomedical research and there were only small variations by population group. When asked whether one's own clinical blood samples could be used in scientific biomedical research, 84 per cent of the respondents would allow it. The most (...) important reasons for giving routinely collected samples to a biobank were altruistic. Attitudes were strongly dependent on the sponsor of the research. Domestic research was looked at more positively than international research. Whether research was made by a public or private actor had less impact. The results suggest that people want to be research participants to help such research of their own free will, and to choose whom they help. This has an impact on the way participants are informed, on the criteria used by ethics committees and other research regulators, and also on transparency and access to research results. (shrink)

The purpose of the research was to study Finnish people's attitudes towards biomedical research and whether the research sponsor makes a difference to those attitudes. A survey questionnaire was sent to a random sample of 25-64 years old. Respondents had a positive attitude towards biomedical research and there were only small variations by population group. When asked whether one's own clinical blood samples could be used in scientific biomedical research, 84 per cent of the respondents would allow it. The most (...) important reasons for giving routinely collected samples to a biobank were altruistic. Attitudes were strongly dependent on the sponsor of the research. Domestic research was looked at more positively than international research. Whether research was made by a public or private actor had less impact. The results suggest that people want to be research participants to help such research of their own free will, and to choose whom they help. This has an impact on the way participants are informed, on the criteria used by ethics committees and other research regulators, and also on transparency and access to research results. (shrink)