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Challenges for Citizen Science and the EU Open Science Agenda under the GDPR

DOI https://doi.org/10.21552/edpl/2018/3/7

Anna Berti Suman, Robin Pierce


Present discussions on the implications of the GDPR for medical practice and health research mostly target the passive collection of health data. This article shifts the lens of analysis to the scarcely researched and rather different phenomenon of the active sharing of health data within the framework of Citizen Science projects. Starting from this focus, the article queries whether data processing requirements under the GDPR impacts the advancement of Citizen Science for health research. A number of tensions between the two aims are identified both in abstract terms and ‘in practice’ by analysing three Citizen Science scenarios and drawing parallels with the experience of ‘collective’ Clinical Trials. The limited literature on the topic makes this article an exploratory reflection on key tensions, with the aim of opening the way for further research. This discussion is inspired by the need to guarantee that opportunities of Citizen Science will not be unduly curtailed by the advent of the GDPR but also to ensure that Citizen Science is implemented in ways that are consistent with the GDPR.
Keywords: Citizen Science, Open Science, GDPR, Secondary Use of Health Data, Research Exemption

Anna Berti Suman, PhD researcher at the Tilburg Institute for Law, Technology, and Society. Her PhD project aims at investigating the influence of ‘Citizen Sensing’ practices on environmental health risk governance. She has work and research experience in health and technology, environmental law, and Citizen Science. Robin Pierce, JD, PhD, is associate professor at the Tilburg Institute for Law, Technology, and Society (TILT, Tilburg University, The Netherlands). She has taught in Data Protection and Privacy Law and currently teaches a course on Regulation for the LLM Law & Technology. Her current research addresses the themes of data protection law and health data and AI in medicine. For correspondence: <mailto:A.BertiSuman@uvt.nl>.

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