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  1. Negotiating the reuse of health-data: Research, Big Data, and the European General Data Protection Regulation.Ulrike Felt & Johannes Starkbaum - 2019 - Big Data and Society 6 (2).
    Before the EU General Data Protection Regulation entered into force in May 2018, we witnessed an intense struggle of actors associated with data-dependent fields of science, in particular health-related academia and biobanks striving for legal derogations for data reuse in research. These actors engaged in a similar line of argument and formed issue alliances to pool their collective power. Using descriptive coding followed by an interpretive analysis, this article investigates the argumentative repertoire of these actors and embeds the analysis in (...)
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  • Biobanks as a Central Part of the Finnish Growth and Genomic Strategies: How to Balance Privacy in an Innovation Ecosystem?Sirpa Soini - 2016 - Journal of Law, Medicine and Ethics 44 (1):24-34.
    Finland has aimed to make itself an international leader in genomic research and related business and, in working towards that goal, has enacted biobank legislation. The Biobank Act requires biobanks to gain approval, be supervised, and register at the national level. Numerous other laws may also apply in any given research setting, such as the Personal Data Act, the Medical Research Act, and the Act on Medical Use of Human Organs and Tissues. In terms of privacy protection, anonymization is generally (...)
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