Negotiating the reuse of health-data: Research, Big Data, and the European General Data Protection Regulation

• Published in: Big data & society Vol. 6; no. 2; p. 205395171986259
• Main Authors: Starkbaum, Johannes, Felt, Ulrike
• Format: Journal Article
• Language: English
• Published: London, England SAGE Publications 01.07.2019; Sage Publications Ltd; SAGE Publishing
• Subjects: Alliances; Aspiration; Big Data; Biobanks; Citizens; Data integrity; Data management; Data retrieval; General Data Protection Regulation; Governance; Health; Health research; Protection; Regulation; Big Data; policy analysis; biobanks; European Union; General Data Protection Regulation; governance
• ISSN: 2053-9517; 2053-9517
• DOI: 10.1177/2053951719862594

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 ethical debates on data sharing and biobank-related data governance. We observe efforts to perform a paradigmatic shift of the discourse around the General Data Protection Regulation-implementation away from ‘protecting data’ as key concern to ‘protecting health’ of individuals and societies at large. Instead of data protection, the key risks stressed by health researchers became potential obstacles to research. In line, exchange of information with data subjects is not a key concern in the arguments of biobank-related actors and it is assumed that patients want ‘their’ data to be used. We interpret these narratives as a ‘reaction’ to potential restrictions for data reuse and in line with a broader trend towards Big Data science, as the very idea of biobanking is conceptualized around long-term use of readily prepared data. We conclude that a sustainable implementation of biobanks needs not only to comply with the General Data Protection Regulation, but must proactively re-imagine its relation to citizens and data subjects in order to account for the various ways that science gets entangled with society.