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First name
Regina
Last name
Becker
    Description
    Scientific peer-reviewed publication
    Description/abstract

    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.

    Publication Language
    English
    Topics
    Unclassified
    ISSN Number
    1438-8871
    Access rights to the publication
    Closed access
    Country(ies)
    Country outside Europe;
    Luxembourg;
    United Kingdom
    Geo coverage
    Multinational
    Journal
    Journal of Medical Internet Research
    Publisher
    JMIR Publications Inc.
    Year of Publication
    2020
    Volume
    22
    Issue
    8
    Pages
    e19799