UK Biobank takes steps after data listed for sale in China

UK Biobank is to introduce new data safeguards, after UK health data that it holds was found for sale on a Chinese ecommerce website.

UK Biobank maintains a database of genetic, health and lifestyle information from approximately 500,000 participants, with data deidentified and made available to researchers. Since its inception in 2006, more than 22,000 scientists have accessed UK Biobank data, leading to the publication of more than 18,000 research studies. However, deidentified participant data has been found offered for sale on the Chinese ecommerce platform Alibaba, with listings posted by researchers from three Chinese universities that had previously been approved by UK Biobank. Now, UK Biobank representatives have said that they will create a new automated data-checking system to avoid future misuse of data.

Professor Sir Rory Collins, principal investigator and chief executive of UK Biobank, said: 'We are developing the world's first automated checking system able to prevent deidentified participant data from being taken off the UK Biobank research platform.' Professor Collins also apologised to participants, and reiterated how important this data is for research into preventing and treating disease.

The listings for sale were removed following collaboration between UK Biobank and the UK and Chinese governments. UK Biobank also revoked dataset access from the institutions identified as responsible for the data misuse. Furthermore, the UK government has asked UK Biobank to pause access to its data until additional safeguards are in place.

Researchers note that data incidents of this nature can undermine participants' confidence and willingness to participate in initiatives like UK Biobank. In a recent BMJ editorial, Dr Luc Rocher (from the University of Oxford) and Dr Jessica Morley (from Yale's Digital Ethics Centre in Connecticut) highlight that underserved communities – already more likely to distrust health systems – are disproportionately affected by such breakdowns in trust. Reduced participation from these populations could, in turn, reduce the diversity of health data available for research.

'UK Biobank participants have made an exceptional contribution to health research, volunteering their data through explicit consent to support the public good,' said Anna Steere, head of Understanding Patient Data in London. 'Trust in the use of health data is not built on the idea that nothing ever goes wrong, but on what organisations do when it does – through accountability, openness and a clear commitment to strengthening protections in response. Those early actions matter in maintaining public confidence and ensuring essential research can continue responsibly.'

Officials at UK Biobank have said that they intend to have the new data-checking system in place by the end of 2026.