UK Biobank Data Briefly Listed for Sale on Alibaba

The confidential health records of 500,000 British volunteers from the UK Biobank project were offered for sale on Alibaba's Chinese website. According to multiple reports, the data was listed by several sellers and contained de-identified information that did not include names, addresses, or precise dates of birth.

The UK government confirmed that the listings have been removed and it is not believed any sales were made. Technology Minister Ian Murray informed the Commons that three separate listings appeared to sell Biobank participation data. The data found for sale was described as 'de-identified,' meaning it did not include personally identifying information.

The UK Biobank holds extensive health data, including genome sequences, brain scans, blood samples, and diagnostic records. Scientists at universities and private companies worldwide apply for access to this data. In response to the breach, Murray stated that the government worked with UK Biobank, the Chinese government, and Alibaba to have the listings removed.

UK Biobank has temporarily suspended access to its research platform while implementing technical measures to prevent bulk downloads. The charity has also referred itself to the Information Commissioner's Office for investigation. Professor Rory Collins, chief executive of UK Biobank, emphasized that the protection of participant data is taken extremely seriously and that measures are being put in place to prevent such incidents in the future.

The UK Biobank project was launched in 2003 and recruited half a million participants aged 40 to 69 between 2006 and 2010. Participants provided genetic data, clinical measurements, health information, biological samples, and lifestyle data, undergoing regular follow-ups.

Thousands of research papers have been published based on UK Biobank data. Key discoveries include identifying four proteins in the blood that could help diagnose dementia before symptoms develop. The project has also scanned the brains, hearts, and other organs of 100,000 participants, leading to insights into human aging and disease detection.

Despite the removal of the listings, concerns about data protection have been raised. Last month, it was revealed that participant health data had been leaked online by researchers in some instances traceable back to volunteers. This incident marks the 198th known exposure of UK Biobank data since last summer, according to Prof Luc Rocher of the Oxford Internet Institute.

Professor Sir Rory Collins described those responsible for the breach as 'a few bad apples' and expressed anger about the incident during an interview with BBC Radio 4's Today programme. He stated that the affected academic institutions had been banned from accessing UK Biobank's platform. The organization is conducting a comprehensive investigation into how the data was made available for sale.

Collins acknowledged that while it is 'impossible' to entirely rule out identification of participants through de-identified data combined with other information, there is no evidence this has occurred. He emphasized the balance between making data available for scientific discovery and protecting participant privacy.