UK Technology Minister Ian Murray told the House of Commons that information of around 500,000 volunteer participants to the comprehensive health database was found listed for sale on the Alibaba e-commerce platform, News.Az reports, citing foreign media.
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He said the government had worked with the charity, the Chinese government and Alibaba to ensure that all three listings involving participant data had been removed soon after being alerted to the data breach on Monday.
“I want to thank the Chinese government for the speed and seriousness with which they worked with us to help remove these listings and ongoing work to remove any further listings,” said Murray.
The minister said that Biobank has since revoked access to the research institutions identified as the source of the information landing online for sale.
“We have asked that the Biobank charity pause further access to its data until they have put in place a technical solution to prevent data from its current platform from being downloaded in this way again. I can confirm to the House that this pause is now in place,” he said.
UK Biobank is a non-profit charity, independent of the government, which brings together data donated by volunteer participants.
It is then shared with researchers globally to make significant scientific discoveries aimed at improving patient health.
Such research includes discovering genes that affect the risk of heart disease or cancer, identifying new ways of predicting dementia, early warning signs for cancers, understanding immunity to COVID-19, and work towards earlier detection of Parkinson’s.
“It is one of the most successful and important studies of its type and continues to benefit patients in the UK and around the world. We are all grateful to those individuals who are part of this landmark study that is so important for all of our health,” said Murray.
“I want to reassure the House up front, however, that Biobank has advised that this data did not contain participants’ names, addresses, contact details, or telephone numbers. 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,” he said.
UK Biobank has referred itself to the UK’s Information Commissioner’s Office and is investigating how the data ended up for sale online “as a priority”.
Professor Sir Rory Collins, CEO and Principal Investigator of UK Biobank, issued a message of reassurance to the participants and expressed gratitude for the government’s intervention.
“With support from both the UK and Chinese governments, Alibaba swiftly removed those listings before any sales were made. This is a clear breach of the contract signed by these academic institutions and they, along with the individuals involved, have had their access suspended,” said Collins.
“We understand that the existence of these listings, even temporarily, will be concerning to you. We want to reassure you that all the data are de-identified; they do not contain any personally identifying information (such as names, addresses, dates of birth, and NHS numbers),” he said in the message.
Collins confirmed that the charity has temporarily blocked access to the globally accessible research platform while it takes further steps to prevent a similar breach in future.
“By making data available responsibly to scientists around the world, UK Biobank is allowing discoveries to be made that would not otherwise be possible, leading to new ways to prevent and treat disease, and better health for all of us,” he added.
The government stressed that it is taking the incident “extremely seriously” and will soon be issuing new guidance on control of data from research studies.
