The government has confirmed that medical data belonging to 500,000 members of the Biobank, the UK’s health data project, was offered for sale in China.
The data is meant to be used by scientists to help understand and treat diseases such as cancer, dementia and Parkinson’s.
Technology minister Ian Murray told MPs that the 'unacceptable abuse' of its data meant that datasets appeared in three listings on the e-commerce site Alibaba.
According to the Government, the data had been legitimately downloaded by three research institutions in China, which had approved access for scientific work.
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Their access has now been revoked while authorities investigate how the information ended up being advertised for sale.
Officials stressed that personally identifying details were not included in the shared datasets and that names, addresses, phone numbers, dates of birth and NHS numbers are removed before researchers receive the information.
However, Murray told MPs he could not guarantee that identification would be impossible, although doing so would require a very advanced and complex method.
Speaking in the Commons, Murray said: “The UK Biobank charity informed the Government that it had identified their data had been advertised for sale by several sellers on Alibaba e-commerce platforms in China.
“Biobank told us that in three listings that appeared to sell… Biobank participation data had been identified. At least one of these three data sets appear to contain data from all 500,000 UK Biobank volunteers.”
Those joining UK Biobank were between 40 and 69 years of age when they joined the study between 2006-2010.
Data from it has been cited in more than 18,000 peer-reviewed scientific papers, including on major causes of ill-health.
Murray called it an 'unacceptable abuse of the UK Biobank charity’s data and abuse of the trust that participants readily expect when sharing the data for research purposes'.
He said: “The Government takes this incident extremely seriously which is why we have acted rapidly to support the UK Biobank charity in their response and why I wanted to update the House at this earliest opportunity.
“The Government will soon be issued new guidance on controlling data from research studies, and I’d like to take this opportunity once again to urge all businesses and charities to ensure their systems and data sharing processes are as secure as possible.
“We wrote out to businesses last week about the cyber security tools available to them for free from Government and the steps they should take to maximise security. Ensuring the safe use of UK Data is a priority for this Government.”
Biobank's chief executive and principal investigator Sir Rory Collins said: “We apologise to our participants for the concern this will cause, and we hope to provide reassurance by outlining the serious actions we are taking in response.
“Your personally identifying information in UK Biobank is safe and secure.”
He added: “We are putting in place additional security measures to prevent this happening again. We will conduct a comprehensive investigation into this incident.”
Anish Vij