Detaching data from the state: Biobanking and building Big Data in Sweden

Abstract

LifeGene, a biobank and research infrastructure, is Sweden’s largest biomedical project. Designed for research on gene–environment interactions, the project aimed to collect data and biological samples from 500 000 individuals. The directors pointed to Sweden’s universal health-care system, national registries and pro-science citizenry as indicative of the nation’s unique suitability for this ambitious project. As researchers explained, in Sweden, large-scale national collection of personal data has generally proceeded with little debate. In this view, the historical legacy of social engineering and close ties between science and the state has led to a popular sense of trust in the state to collect and use information in the best interest of the population. However, LifeGene is more than just a continuation of information-gathering-as-usual in a country where the government has long kept track of its population’s health and social characteristics. With LifeGene, the construction of surrounding research infrastructures, and a reworking of national data protection legislation, Swedish researchers and authorities are now purposely building a framework for moving from data-as-usual to Big Data and the Big Value it promises to deliver. Drawing on ethnographic fieldwork with Swedish researchers and data managers, this article will examine the legal, social and infrastructural challenges of Sweden’s bid for Big Data.

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Notes

  1. 1.

    Funders include the Swedish Research Council, the Karolinska Institute, AFA Insurance, and the Ragnar and Torsten Söderberg Foundations.

  2. 2.

    All names used are pseudonyms.

  3. 3.

    Sweden’s role in WWII was more complicated than popular narratives of neutrality might suggest. See Gilmour (2011) for a thoughtful analysis. However, elsewhere in Europe, the postwar legacy of atrocities enabled by unchecked state power and genocide committed in the name of social engineering would certainly lend a more ominous note to national efforts to build comprehensive population-wide registers.

  4. 4.

    The UK Biobank collects samples from volunteers aged 45–69; similarly, the Västerbotten Medical Biobank covers only ages 40–60 (Austin et al., 2003). However, there are an increasing number of biobanks that include samples from minors (Hens et al, 2011).

  5. 5.

    Sweden’s 1998 Personal Data Act was based on the European “Data Protection Directive,” the European Parliament and Council Directive 95/46/EC from 24 October 1995. Sweden, as a member of the EU, is a member of the Data Protection Convention.

  6. 6.

    Biomedical infrastructures include the Swedish Initiative for Research on Microdata in the Social and Medical Sciences (SIMSAM), the Swedish National Data Service (SND), Biobanking and Molecular Resource Infrastructure of Sweden (BBMRI.se), Bioinformatic Infrastructure for Life Sciences (BILS), the National Genomics Infrastructure (NGI), and the Science for Life Laboratory (SciLifeLab), among others.

  7. 7.

    Sweden’s personal identification number system would also make it possible to link LifeGene with civil registries, although the informed consent specifies that only health-related data will be accessed. In Sweden, linking biobanks to civil databases such as police registers may be particularly sensitive. See Hansson and Björkman, 2006.

  8. 8.

    LifeGene does not profit from research it enables, but individual researchers or corporate partners can commercialize products of their research, including any patentable inventions.

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Acknowledgements

This work was supported by funding from the National Science Foundation (award number BCS-0921847), the Social Science Research Council, and the Fulbright Program. A fellowship at the Brocher Foundation in 2011 allowed me to begin preliminary work on this project. I would like to thank Rayna Rapp and Linda Hogle, the editors of this special issue, for their invaluable feedback on this article.

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Cool, A. Detaching data from the state: Biobanking and building Big Data in Sweden. BioSocieties 11, 277–295 (2016). https://doi.org/10.1057/biosoc.2015.25

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Keywords

  • Big Data
  • Sweden
  • biobanks
  • medical research
  • infrastructure