500k UK Biobank records listed
- UK authorities confirmed health data from 500,000 UK Biobank participants was listed for sale online. - The government said no personally identifiable information appears to have been made available in the listings. - The incident refreshed public privacy anxiety and highlighted health data vulnerability to online marketplaces. (bbc.com)
The UK government said data from all 500,000 UK Biobank volunteers appeared in online sale listings discovered on April 20. (gov.uk) Technology minister Ian Murray told MPs on April 23 that three listings were identified on Alibaba e-commerce platforms in China. At least one dataset appeared to contain records from the full UK Biobank cohort. (gov.uk) Murray said the listed data did not include names, addresses, contact details or telephone numbers. He said the government and the vendor believed no purchases were made before the listings were removed. (gov.uk) UK Biobank is a charity, independent of government, that shares de-identified health data with approved researchers. The project recruited about 500,000 volunteers in Britain between 2006 and 2010, mostly ages 40 to 69, and opened the resource to researchers in 2012. (gov.uk) (pmc.ncbi.nlm.nih.gov) The database underpins studies on heart disease, cancer, dementia, Parkinson’s disease and Covid-19, according to Murray and UK Biobank. UK Biobank told participants on April 23 that its data had contributed to “thousands of discoveries.” (gov.uk) (ukbiobank.ac.uk) UK Biobank said the records offered for sale came from data previously made available to researchers at three academic institutions. It called the listings a breach of those institutions’ contracts and said the institutions and individuals involved had their access suspended. (ukbiobank.ac.uk) The charity also paused access to its research platform while it adds tighter export controls. It said researchers normally work on a restricted cloud platform in the UK, and it is now imposing strict file-size limits and daily monitoring of exported files. (ukbiobank.ac.uk) Murray said the government asked UK Biobank to stop new access until it had a technical fix to stop downloads “in this way again,” and he said that pause was in place on April 23. He also said the government worked with the Chinese government and Alibaba to remove the listings. (gov.uk) UK Biobank told participants their personally identifying information remained “safe and secure.” The next test is whether tighter controls can protect a research resource built on volunteers agreeing to share data for science. (ukbiobank.ac.uk)
