COVID-19 Research: Navigating the European General Data Protection Regulation.
| Title: | COVID-19 Research: Navigating the European General Data Protection Regulation. |
|---|---|
| Authors: | Becker R; ELIXIR-Luxembourg, Luxembourg Centre for Systems Biomedicine (LCSB), University of Luxembourg, Esch-sur-Alzette, Luxembourg.; Thorogood A; Centre of Genomics and Policy, McGill University, Montreal, QC, Canada.; Ordish J; PHG Foundation, University of Cambridge, Cambridge, United Kingdom.; Beauvais MJS; Centre of Genomics and Policy, McGill University, Montreal, QC, Canada. |
| Source: | Journal of medical Internet research [J Med Internet Res] 2020 Aug 27; Vol. 22 (8), pp. e19799. Date of Electronic Publication: 2020 Aug 27. |
| Publication Type: | Journal Article; Research Support, Non-U.S. Gov't |
| Language: | English |
| Journal Info: | Publisher: JMIR Publications Country of Publication: Canada NLM ID: 100959882 Publication Model: Electronic Cited Medium: Internet ISSN: 1438-8871 (Electronic) Linking ISSN: 14388871 NLM ISO Abbreviation: J Med Internet Res Subsets: MEDLINE |
| Imprint Name(s): | Publication: : Toronto : JMIR Publications; Original Publication: [Pittsburgh, PA? : s.n., 1999- |
| MeSH Terms: | Betacoronavirus/*pathogenicity ; Computer Security/*standards ; Coronavirus Infections/*epidemiology ; Informatics/*methods ; Pneumonia, Viral/*epidemiology; COVID-19 ; Europe ; Humans ; Pandemics ; SARS-CoV-2 |
| 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.; (©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.) |
| References: | Life Sci Soc Policy. 2020 Jan 6;16(1):1. (PMID: 31903508); Eur J Hum Genet. 2020 Jun;28(6):697-705. (PMID: 32123329) |
| Grant Information: | International Canadian Institutes of Health Research. |
| Contributed Indexing: | Keywords: COVID-19; GDPR; data privacy; data protection; health research; pandemic; regulation |
| Entry Date(s): | Date Created: 20200814 Date Completed: 20200909 Latest Revision: 20201218 |
| Update Code: | 20260130 |
| PubMed Central ID: | PMC7470233 |
| DOI: | 10.2196/19799 |
| PMID: | 32784191 |
| Database: | MEDLINE |
Journal Article; Research Support, Non-U.S. Gov't