Making it Open and Keeping it Safe: e-Enabled Data-Sharing in Sweden
Journal article, 2009
This article focuses on data-sharing – a central aspect of an ambitious e-Science programme recently embarked on in Sweden. Data-sharing has become a powerful and promising direction in e-Science in general, even though fraught
with difficulties. Sweden has a unique position in relation to data-sharing: a worldunique set of social science and medical data collections, a well-established tradition of regulations concerning data protection, a widely used form of personal identification that allows integration of databases, and a population that generally trusts researchers and the Swedish state with personal data. The aim of this study was to find out how Swedish database owners/managers and database users – key actors
in the Swedish e-Science enterprise – anticipate the way that databases will be built up, managed and used in the future, and how this will influence e-Science. For this
purpose, these actors were interviewed and official documents on the topic were studied. It is concluded that openness and the integrity of personal data are particularly critical elements for the success of a range of future e-Science endeavours in Sweden and elsewhere.
data-sharing
e-Science
e-Infrastructure
research ethics