Open AccessCOVID-19 Research: Navigating the European General Data Protection Regulation
Author(s) -
Regina Becker,
Adrian Thorogood,
Johan Ordish,
Michael J.S. Beauvais
Publication year - 2020
Publication title -
jmir. journal of medical internet research/journal of medical internet research
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.446
H-Index - 142
eISSN - 1439-4456
pISSN - 1438-8871
DOI - 10.2196/19799
Subject(s) - general data protection regulation , clarity , pandemic , data protection act 1998 , european union , legislature , internet privacy , political science , business , covid-19 , public relations , law and economics , computer security , law , computer science , medicine , economics , international trade , biochemistry , chemistry , disease , pathology , infectious disease (medical specialty)
Researchers must collaborate globally to rapidly respond to the COVID-19 pandemic. In Europe, the General Data Protection Regulation (GDPR) regulates the processing of personal data, including health data of value to researchers. Even during a pandemic, research still requires a legal basis for the processing of sensitive data, additional justification for its processing, and a basis for any transfer of data outside Europe. The GDPR does provide legal grounds and derogations that can support research addressing a pandemic, if the data processing activities are proportionate to the aim pursued and accompanied by suitable safeguards. During a pandemic, a public interest basis may be more promising for research than a consent basis, given the high standards set out in the GDPR. However, the GDPR leaves many aspects of the public interest basis to be determined by individual Member States, which have not fully or uniformly made use of all options. The consequence is an inconsistent legal patchwork that displays insufficient clarity and impedes joint approaches. The COVID-19 experience provides lessons for national legislatures. Responsiveness to pandemics requires clear and harmonized laws that consider the related practical challenges and support collaborative global research in the public interest.