Abstract
In this article, we consider the possible application of the European General Data Protection Regulation (GDPR) to "citizen scientist"-led health research with mobile devices. We argue that the GDPR likely does cover this activity, depending on the specific context and the territorial scope. Remaining open questions that result from our analysis lead us to call for lex specialis that would provide greater clarity and certainty regarding the processing of health data by for research purposes, including these non-traditional researchers.
Highlights
The EU’s General Data Protection Regulation 2016/679 (GDPR),[1] which went into effect on May 25, 2018, governs the processing of personal data in Europe and promotes responsible data processing for a range of legitimate purposes.[2]
Implications In this article, we explored whether the GDPR applies to citizen scientist-led health research with mobile devices
The analysis above shows that, depending on the territorial scope, citizen scientist-led health research with mobile devices is likely to be covered by the GDPR
Summary
The EU’s General Data Protection Regulation 2016/679 (GDPR),[1] which went into effect on May 25, 2018, governs the processing of personal data in Europe and promotes responsible data processing for a range of legitimate purposes.[2]. Citizen scienceled health research with mobile devices holds some promise — some would argue this includes the democratization of science, increased possibility for serendipitous discovery (i.e., more “blue skies research”), and increased statistical power to generate findings (through bringing more individuals together to share data) — it raises some risks. These include the possible lack of consent from participants in research projects, inadequate privacy and security protections for sensitive data exchanged remotely or on the internet, questionable expertise to undertake scientifically rigorous and publishable findings, and even worsening of health conditions caused by improperly drawn conclusions about prevention and treatment options.[6]. Through a series of questions, we consider the possible application of the GDPR and potential implications for citizen science, focusing on a relatively under-discussed provision called the “household exemption.” we argue that the GDPR likely does cover citizen science-led health research with mobile devices, depending on the unregulated health research using mobile devices spring 2020
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