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COVID-19: Putting the General Data Protection Regulation to the Test

The coronavirus disease (COVID-19) pandemic is very much a global health issue and requires collaborative, international health research efforts to address it. A valuable source of information for researchers is the large amount of digital health data that are continuously collected by electronic he...

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Detalles Bibliográficos
Autores principales: McLennan, Stuart, Celi, Leo Anthony, Buyx, Alena
Formato: Online Artículo Texto
Lenguaje:English
Publicado: JMIR Publications 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7265798/
https://www.ncbi.nlm.nih.gov/pubmed/32449686
http://dx.doi.org/10.2196/19279
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author McLennan, Stuart
Celi, Leo Anthony
Buyx, Alena
author_facet McLennan, Stuart
Celi, Leo Anthony
Buyx, Alena
author_sort McLennan, Stuart
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description The coronavirus disease (COVID-19) pandemic is very much a global health issue and requires collaborative, international health research efforts to address it. A valuable source of information for researchers is the large amount of digital health data that are continuously collected by electronic health record systems at health care organizations. The European Union’s General Data Protection Regulation (GDPR) will be the key legal framework with regard to using and sharing European digital health data for research purposes. However, concerns persist that the GDPR has made many organizations very risk-averse in terms of data sharing, even if the regulation permits such sharing. Health care organizations focusing on individual risk minimization threaten to undermine COVID-19 research efforts. In our opinion, there is an ethical obligation to use the research exemption clause of the GDPR during the COVID-19 pandemic to support global collaborative health research efforts. Solidarity is a European value, and here is a chance to exemplify it by using the GDPR regulatory framework in a way that does not hinder but actually fosters solidarity during the COVID-19 pandemic.
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spelling pubmed-72657982020-06-05 COVID-19: Putting the General Data Protection Regulation to the Test McLennan, Stuart Celi, Leo Anthony Buyx, Alena JMIR Public Health Surveill Viewpoint The coronavirus disease (COVID-19) pandemic is very much a global health issue and requires collaborative, international health research efforts to address it. A valuable source of information for researchers is the large amount of digital health data that are continuously collected by electronic health record systems at health care organizations. The European Union’s General Data Protection Regulation (GDPR) will be the key legal framework with regard to using and sharing European digital health data for research purposes. However, concerns persist that the GDPR has made many organizations very risk-averse in terms of data sharing, even if the regulation permits such sharing. Health care organizations focusing on individual risk minimization threaten to undermine COVID-19 research efforts. In our opinion, there is an ethical obligation to use the research exemption clause of the GDPR during the COVID-19 pandemic to support global collaborative health research efforts. Solidarity is a European value, and here is a chance to exemplify it by using the GDPR regulatory framework in a way that does not hinder but actually fosters solidarity during the COVID-19 pandemic. JMIR Publications 2020-05-29 /pmc/articles/PMC7265798/ /pubmed/32449686 http://dx.doi.org/10.2196/19279 Text en ©Stuart McLennan, Leo Anthony Celi, Alena Buyx. Originally published in JMIR Public Health and Surveillance (http://publichealth.jmir.org), 29.05.2020. 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 JMIR Public Health and Surveillance, is properly cited. The complete bibliographic information, a link to the original publication on http://publichealth.jmir.org, as well as this copyright and license information must be included.
spellingShingle Viewpoint
McLennan, Stuart
Celi, Leo Anthony
Buyx, Alena
COVID-19: Putting the General Data Protection Regulation to the Test
title COVID-19: Putting the General Data Protection Regulation to the Test
title_full COVID-19: Putting the General Data Protection Regulation to the Test
title_fullStr COVID-19: Putting the General Data Protection Regulation to the Test
title_full_unstemmed COVID-19: Putting the General Data Protection Regulation to the Test
title_short COVID-19: Putting the General Data Protection Regulation to the Test
title_sort covid-19: putting the general data protection regulation to the test
topic Viewpoint
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7265798/
https://www.ncbi.nlm.nih.gov/pubmed/32449686
http://dx.doi.org/10.2196/19279
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