Detaching data from the state: Biobanking and building Big Data in Sweden (original) (raw)
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Sweden, following the lead of other countries, has recently embarked on an ambitious e-Science programme. This paper focuses on one central aspect of this programme; data sharing. The reason for this focus is twofold: one reason is that data sharing has become one of the most powerful and promising directions in e-Science in general, even if also laden with difficulties. The second reason is that Sweden has a particularly unique position in relation to data sharing in several respects: Sweden has a world-unique 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 the study was to investigate how e-science may influence the way which research data will be shared in the future. For this purpose stakeholders involved in Swedish e-Science data sharing and its new initiatives were interviewed and official documents on the topic were studied. The paper draws the conclusion that openness and integrity protection are particularly critical elements for the success of a range of future e-science endeavours -in Sweden and elsewhere.
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Norway is generally regarded as having good opportunities for biobank research because of Biobank Norway—its national infrastructure of biobanks—which represents one of the world’s largest existing resources within biobanking. It covers both consented population-based and disease-specific clinical biobanks. However, the regulatory framework in Norway for biobanking is fragmented, which makes navigating the legal landscape challenging.The Personal Data Act (PDA) implements the General Data Protection Regulation (GDPR), and a few adjustments were made in the national health legislation in order to bring it into line with the GDPR. The Health Research Act (HRA) enables the use of biobanking and personal data in research with and without the consent of individuals. There are some disagreements about the changes brought about by the GDPR when it comes to research on biological material that includes personal data. When implementing GDPR Article 89, it was emphasised that the Data Protect...
Big Data & Society, 2019
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Iceland is a small democratic state of nearly 300,000 inhabitants that sits in the North Atlantic between the continents of Europe, America, and the Arctic. 1 Although it may seem an unlikely place for innovation of global significance, the small island nation of Iceland has assumed near iconic status in one field in particular: genomics. Aided by recent advances in genetic technologies and by a bold entrepreneurial vision, Iceland's genomic innovations have helped transform medical and genealogical information into a new type of global commodity. Furthermore, these innovations-or more precisely, the controversies they have spawned-have helped precipitate the development of global norms governing the relationship between citizens, medical information, markets, and the state. Iceland's public-private partnership has become a common reference point for other major population genomics initiatives-such as those in Sweden, the United Kingdom, Canada and the United States-but there is often an intriguing gap between what it stands for and what it has become. A November 2005 perspective piece in the New England Journal of Medicine is a good example of how in many accounts of Iceland, important details get lost. In this article, the authors argue that generating the next round of genetic discoveries will require a large number of "health information altruists" to supply health and DNA data and DNA. And they cite the Icelandic government's ability to construct a "national genomic databank," in collaboration with deCODE Genetics Inc., as an example of the public's altruism. 2 This sort of statement is not uncommon in articles written about Iceland, but one problem remains: the country's Health Sector Database, an international symbol of the new state-led genomics and the biotechnological frontier, was never built. Ten years ago, Kari Stefansson, an Icelandic neurologist turned biotech entrepreneur, co-founded deCODE Genetics and began operating in the suburbs of Iceland's capital. Eight years ago, Iceland passed the Health Sector Database (HSD) Act, which authorized the construction of the national database. Today, although deCODE continues to announce discoveries, 3 the controversial idea to allow the
A biotechnological settlement? Making space for 'human nature'at Iceland's genomics frontier
notendur.hi.is
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Institutions, infrastructures, and data friction – Reforming secondary use of health data in Finland
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New data-driven ideas of healthcare have increased pressures to reform existing data infrastructures. This article explores the role of data governing institutions during a reform of both secondary health data infrastructure and related legislation in Finland. The analysis elaborates on recent conceptual work on data journeys and data frictions, connecting them to institutional and regulatory issues. The study employs an interpretative approach, using interview and document data. The results show the stark contrast between the goals of open and Big Data inspired reforms and the existing institutional realities. The multiple tensions that emerged during the process indicate how data frictions emanate to the institutional level, and how mundane data practices and institutional dynamics are intertwined. The article argues that in the Finnish case, public institutions acted as sage-guards of public interest, preventing more controversial parts from passing. Finally, it argues that initi...
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