Key Summary
- Research data from UK Biobank was discovered for sale by several sellers on Alibaba’s e-commerce platforms.
- While the data involves 500,000 volunteers, UK Biobank confirmed it does not contain names, addresses, or telephone numbers.
- The government has successfully had the listings removed and the charity has revoked access for three research institutions identified as the source.
Although the data appears to contain information regarding 500,000 UK Biobank participants, the charity emphasized that the files are anonymized and do not include personally identifying information such as names or contact details.
"The government has spoken to the vendor today and they do not believe that there were any purchases from the three listings before they were taken down," Murray said.
UK Biobank described the incident as an unacceptable abuse and a clear breach of contractual obligations.
In response, the charity has temporarily suspended all access to its research platform while implementing security measures to limit export sizes and monitor for suspicious activity.
The matter has also been referred to the Information Commissioner’s Office (ICO) for a comprehensive investigation.
UK Biobank is a health research charity that provides anonymised data to accredited researchers.
Murray, who described the incident as an unacceptable abuse of UK Biobank's data and said the government took the matter "extremely seriously," said the charity had referred itself to the Information Commissioner's Office.
The National Data Guardian, Dr Nicola Byrne, has issued the following statement after news from the House of Commons that UK Biobank participants’ health data has been advertised for sale by several sellers on Alibaba e-commerce platforms in China.
“People who generously share their health data to benefit others through medical research rightly expect it to be kept safe and for there to be accountability when things go wrong.
“Given this, I am profoundly concerned to learn that the confidential data participants entrusted to UK Biobank in good faith has been found available for sale online.”
“It is reassuring that immediate steps to secure data were taken quickly. This must now be matched by full transparency and accountability. Participants deserve clear answers from UK Biobank about what happened, why it happened, and what will change to prevent this happening again. Decisive action is now essential to maintain public confidence in responsibly governed health data research.
“I am engaging with the Government to offer my advice and support.”
