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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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Detalles Bibliográficos
Autores principales: Becker, Regina, Thorogood, Adrian, Ordish, Johan, Beauvais, Michael J.S.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7470233/
https://www.ncbi.nlm.nih.gov/pubmed/32784191
http://dx.doi.org/10.2196/19799
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author Becker, Regina
Thorogood, Adrian
Ordish, Johan
Beauvais, Michael J.S.
author_facet Becker, Regina
Thorogood, Adrian
Ordish, Johan
Beauvais, Michael J.S.
author_sort Becker, Regina
collection PubMed
description 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.
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spelling pubmed-74702332020-09-17 COVID-19 Research: Navigating the European General Data Protection Regulation Becker, Regina Thorogood, Adrian Ordish, Johan Beauvais, Michael J.S. J Med Internet Res Viewpoint 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. JMIR Publications 2020-08-27 /pmc/articles/PMC7470233/ /pubmed/32784191 http://dx.doi.org/10.2196/19799 Text en ©Regina Becker, Adrian Thorogood, Johan Ordish, Michael J.S. Beauvais. Originally published in the Journal of Medical Internet Research (http://www.jmir.org), 27.08.2020. https://creativecommons.org/licenses/by/4.0/ This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research, is properly cited. The complete bibliographic information, a link to the original publication on http://www.jmir.org/, as well as this copyright and license information must be included.
spellingShingle Viewpoint
Becker, Regina
Thorogood, Adrian
Ordish, Johan
Beauvais, Michael J.S.
COVID-19 Research: Navigating the European General Data Protection Regulation
title COVID-19 Research: Navigating the European General Data Protection Regulation
title_full COVID-19 Research: Navigating the European General Data Protection Regulation
title_fullStr COVID-19 Research: Navigating the European General Data Protection Regulation
title_full_unstemmed COVID-19 Research: Navigating the European General Data Protection Regulation
title_short COVID-19 Research: Navigating the European General Data Protection Regulation
title_sort covid-19 research: navigating the european general data protection regulation
topic Viewpoint
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7470233/
https://www.ncbi.nlm.nih.gov/pubmed/32784191
http://dx.doi.org/10.2196/19799
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