2021
DOI: 10.1161/hypertensionaha.120.16340
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Data Sharing Under the General Data Protection Regulation

Abstract: The General Data Protection Regulation (GDPR) became binding law in the European Union Member States in 2018, as a step toward harmonizing personal data protection legislation in the European Union. The Regulation governs almost all types of personal data processing, hence, also, those pertaining to biomedical research. The purpose of this article is to highlight the main practical issues related to data and biological sample sharing that biomedical researchers face regularly, and to specify how these are addr… Show more

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Cited by 67 publications
(39 citation statements)
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“…Finally, in this context of the interplay between the research ethics regulations and regulations on the protection of personal data, it is important not to discount consent as a legal basis when it is methodologically feasible because consent can empower data subjects to control their data and can put the data subject on a “more symmetrical informational and communicative plane with the data controller” (Dove and Chen 2020 ). In addition, it seems that consent is still perceived as a priority basis for processing personal data for research purposes by some researchers and regulators in a few EU member states (Vlahou et al 2021 ; Assessment of the EU Member States’ rules on health data in the light of GDPR 2021). Furthermore, studies on public opinion also show that there is still a prevailing interest of individuals to have control over personal data in regards of what data are collected, who has access to this data, how and with whom data are shared and for what purposes the data are used.…”
Section: Discussionmentioning
confidence: 99%
“…Finally, in this context of the interplay between the research ethics regulations and regulations on the protection of personal data, it is important not to discount consent as a legal basis when it is methodologically feasible because consent can empower data subjects to control their data and can put the data subject on a “more symmetrical informational and communicative plane with the data controller” (Dove and Chen 2020 ). In addition, it seems that consent is still perceived as a priority basis for processing personal data for research purposes by some researchers and regulators in a few EU member states (Vlahou et al 2021 ; Assessment of the EU Member States’ rules on health data in the light of GDPR 2021). Furthermore, studies on public opinion also show that there is still a prevailing interest of individuals to have control over personal data in regards of what data are collected, who has access to this data, how and with whom data are shared and for what purposes the data are used.…”
Section: Discussionmentioning
confidence: 99%
“…Third, when researchers intend to share data with other researchers, they should carefully reflect on the balance between open science practices and privacy protection regulations 151,152 , certainly regarding the General Data Protection Regulation of the European Union. Data anonymization can provide a solution for data sharing as fully anonymous data does not fall under the privacy protection rules 153 .…”
Section: Data and Code Availabilitymentioning
confidence: 99%
“…In my field of research, biomarkers and biomarker panels generally cannot be patented, limiting open access data sharing to a minimum. An additional issue to be taken into consideration is the GDPR regulation in Europe, which, also due to the unclear text including the threat of enormous fines, further stands in the way of data sharing [11]. However, I personally feel that frequently GDPR is (ab)used to avoid data sharing, in some cases also because the interpretation presented in a paper as a study result is in reality not fully supported by the data.…”
Section: There Is a Large Amount Of Datasets Available In Open Access Repositories How Do You Feel About Data Sharing And Do You Think Rementioning
confidence: 99%