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

摘要

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.