Since the advent of the European Union (EU) General Data Protection Regulation (GDPR) in 2018, the biomedical research community has struggled to share data with colleagues and consortia outside the EU, as the GDPR limits international transfers of personal data. A July 2020 ruling of the Court of Justice of the European Union (CJEU) reinforced obstacles to sharing, and even data transfer to enable essential research into coronavirus disease 2019 (COVID-19) has been restricted in a recent Guidance of the European Data Protection Board (EDPB). In this article, the authors examine whether there is room under the GDPR for EU biomedical researchers to share data from the EU with the rest of the world to facilitate biomedical research. They then propose solutions for consideration by either the EU legislature, the EU Commission, or the EDPB in its planned Guidance on the processing of health data for scientific research. Finally, they urge the EDPB to revisit its recent Guidance on COVID-19 research.
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Since the advent of the European Union (EU) General Data Protection Regulation (GDPR) in 2018, the biomedical research community has struggled to share data with colleagues and consortia outside the EU, as the GDPR limits international transfers of personal data. A July 2020 ruling of the Court of Justice of the European Union (CJEU) reinforced obstacles to sharing, and even data transfer to enable essential research into coronavirus disease 2019 (COVID-19) has been restricted in a recent Guidance of the European Data Protection Board (EDPB). In this article, the authors examine whether there is room under the GDPR for EU biomedical researchers to share data from the EU with the rest of the world to facilitate biomedical research. They then propose solutions for consideration by either the EU legislature, the EU Commission, or the EDPB in its planned Guidance on the processing of health data for scientific research. Finally, they urge the EDPB to revisit its recent Guidance on COVID-19 research.