Genetic data privacy, the GDPR, and research needs: A delicate balance

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Genetic data privacy, the GDPR, and research needs: A delicate balance

The EU’s General Data Protection Regulation (GDPR) has created a great deal of uncertainty about how key requirements should be interpreted. This means that collaborators in international genetic research projects do not always agree on fundamental issues such as whether they are processing personal data, consent requirements under the GDPR and on what basis genetic data can be transferred outside the EU/EEA, if at all. These results from a study carried out by Colin Mitchell, Senior Policy Analyst in Law, Regulation and Digital Health, and colleagues from the PHG Foundation, University of Cambridge, UK will be presented to the annual conference of the European Society of Human Genetics today.

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