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