Half a million Britons have had their personal health and genetic data listed for sale on a Chinese website, prompting a government investigation and condemnation of an 'unacceptable abuse' of data from the pioneering UK Biobank project.
Data Listed on Alibaba
Technology minister Ian Murray confirmed in the House of Commons that the data was found listed for sale on the Alibaba e-commerce platform after being legitimately downloaded by three research institutions in China, whose access has since been revoked. The UK Biobank charity informed the government that it had identified their data advertised for sale by several sellers on Alibaba. At least one of the three listings appeared to contain data from all 500,000 UK Biobank volunteers.
Nature of the Data
UK Biobank removes personal identifying information such as names, addresses, dates of birth, and NHS numbers before granting scientists access. The dataset includes genetic information from whole genome sequencing, saliva, blood, and urine samples, as well as regular dietary surveys, cognitive tests, stress levels, FitBit readings, and full medical histories. Participants, aged 40 to 69 when recruited between 2006 and 2010, have contributed to the world's most comprehensive biological dataset.
The minister stated that no purchases were made from the three listings, which have been taken down, and thanked the Chinese government for cooperation. However, he could not guarantee that individuals could not be identified through 'very advanced' methods of piecing together datasets.
Impact and Response
UK Biobank has temporarily closed access to its research platform. Chief executive and principal investigator Sir Rory Collins apologised to volunteers, stating that personally identifying information remains safe and secure. He added that additional security measures are being implemented to prevent recurrence.
Professor Elena Simperl of King's College London described the incident as an infrastructure problem, not a complex cyber-attack, stressing the need for continued investment in data stewardship.
The UK Biobank has provided data for more than 18,000 peer-reviewed scientific papers, offering insights into diseases such as dementia, cancers, and Parkinson's. The government has launched a comprehensive investigation into the breach.
