COVID-19 Research: Navigating the European General Data Protection Regulation

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...

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Bibliographic Details
Published in:Journal of medical Internet research 2020-08, Vol.22 (8), p.e19799-e19799
Main Authors: Becker, Regina, Thorogood, Adrian, Ordish, Johan, Beauvais, Michael J S
Format: Article
Language:English
Subjects:
Alliances
Betacoronavirus - pathogenicity
Computer Security - standards
Consent
Coronavirus Infections - epidemiology
Coronaviruses
COVID-19
Data integrity
Data processing
Europe
General Data Protection Regulation
Health information
Humans
Infectious diseases
Informatics - methods
Justification
Legislatures
Medical research
Pandemics
Personal information
Pneumonia, Viral - epidemiology
Public health
Public interest
Research ethics
Responsiveness
Safeguards
SARS-CoV-2
Viewpoint
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Summary: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.
ISSN:1438-8871
1439-4456
1438-8871
DOI:10.2196/19799