Data deletion Inspections

Description

UK Biobank is a large-scale biomedical database and research resource containing genetic, lifestyle and health information from around half a million UK participants. UK Biobank's database, which includes blood samples, heart and brain scans and genetic data of the 500,000 volunteer participants, is globally accessible to approved researchers who are undertaking health-related research that's in the public interest. Protecting the confidentiality and security of participant data is UK Biobank's highest priority. Before a recent widely reported data incident, UK Biobank was undertaking a phased transition from a data download model to a more secure, platform-by-default access model through the UK Biobank Research Analysis Platform (UKB-RAP), in line with principles of a Secure Data Environment approach. The data incident has resulted in the acceleration of the delivery and implementation of technical and operational controls that were in development, principally the introduction of an automated checking system to prevent de-identified participant data being egressed from the research analysis platform . As part of addressing the legacy data download model, UK Biobank is working to complete the transition and ensure outstanding downloaded data are deleted. Affected researchers are being contacted to complete this work, and UK Biobank intends to procure services from two independent third-party organisations to report on the researchers' data deletion position.