UK Biobank records listed online

UK technology minister Ian Murray said on April 23 that health data from UK Biobank volunteers had been advertised for sale on Alibaba platforms in China. (gov.uk) Murray told the House of Commons that UK Biobank alerted the government on Monday, April 20, after finding three listings. He said at least one dataset appeared to contain data from all 500,000 volunteers. (gov.uk) (bmj.com) UK Biobank said the listings were removed before any purchases were made and that the exposed material did not include names, addresses, contact details or telephone numbers. The charity said the data was de-identified, not directly named. (ukbiobank.ac.uk) (gov.uk) The records were still detailed. UK Biobank told The BMJ the data on sale included gender, age, month and year of birth, socioeconomic status, lifestyle habits, mental health, self-reported medical history, cognitive measures, blood and biochemistry results, and disease outcomes including cancer diagnosis dates. (bmj.com) UK Biobank is a long-running British research resource that lets approved scientists study how genes, lifestyle and environment shape disease over time. Its half-million volunteers have been used in research on heart disease, cancer, dementia, COVID-19 immunity and Parkinson’s detection. (gov.uk) (ukbiobank.ac.uk) The immediate issue is not a public data dump from UK Biobank’s main systems, but a breakdown in the rules for researchers who were allowed to use the data. UK Biobank said three academic institutions breached their contracts and that those institutions and individuals had their access suspended. (ukbiobank.ac.uk) Murray said the government asked UK Biobank to pause further access until it could stop data being downloaded in the same way again. UK Biobank then temporarily suspended all access to its cloud research platform while it imposed strict export limits and daily monitoring of files leaving the system. (gov.uk) (ukbiobank.ac.uk) The National Data Guardian, Dr Nicola Byrne, said on April 23 that participants “rightly expect” their data to be kept safe and called for “full transparency and accountability.” She said decisive action was needed to protect public confidence in health-data research. (gov.uk) UK Biobank has said personally identifying information remains secure and that it has no evidence any participant was identified unwillingly. The next test is whether the investigation can show exactly how research data left approved hands and ended up on a consumer marketplace. (ukbiobank.ac.uk) (gov.uk)