What is it about?
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.
Featured Image
Photo by Markus Winkler on Unsplash
Why is it important?
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.
Read the Original
This page is a summary of: Challenges for Citizen Science and the EU Open Science Agenda under the GDPR, European Data Protection Law Review, January 2018, Lexxion Verlag,
DOI: 10.21552/edpl/2018/3/7.
You can read the full text:
Contributors
The following have contributed to this page
