Tuesday, December 1, 2020
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General data protection regulations hamper global biomedical research


The European Union General Data Protection Regulation (GDPR) was designed to give EU citizens greater protection and control of their personal data, in particular when it is transferred to entities outside the EU. However, in a Policy Forum researchers argue that current interpretations of the law excessively limit data sharing outside the EU, which has hampered global biomedical research, including essential efforts to address the issue of COVID-19.

To remedy this, Jasper Bovenberg and other researchers propose amendments for the EU Commission to consider in its next GDPR review and urge the European Data Protection Board (EDPB) – the governing body of the GDPR – to reevaluate. recent guidance on investigations related to COVID-19.

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According to the authors, current interpretations of the GDPR do not recognize how personal data is used in biomedical research. They are commonly used to derive widespread knowledge that benefits society and are applied in ways that pose negligible risks to the privacy of the people to whom the data relates.

Thus, the balance between an individual’s privacy and the benefit to society in research contexts is quite different from others, such as commercial and marketing efforts that seek to profile individuals and their behaviors.

As a result, the GDPR has thwarted data sharing in global biomedical research since its emergence in 2018. Unfortunately, the authors say, the recent EDPB guidelines pertaining to COVID-19 lack both urgency and consideration for the public good. in general and do not take into account scientific considerations.

“We believe that our recommendations can help correct the unfortunate consequences created by the current PIBR focus on international research data transfers and will allow the biomedical research community to share data beyond the EU for scientific research, ensuring that the at the same time a high level of protection of data subjects, “write the authors.

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