The UK government has said that medical data from around half a million volunteers in Biobank, the country’s health information database, has been put up for sale online.
On Thursday, technology minister Ian Murray told the House of Commons that the charity had informed the government the data “had been advertised for sale by several sellers on Alibaba’s e-commerce platforms in China.”
He added that, according to the charity, the data “did not include participants’ names, addresses, contact details, or telephone numbers.”
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Sky News reports: The Biobank is the world’s most comprehensive dataset of biological health and lifestyle information, and has been used to achieve improvements in the detection and treatment of dementia, cancers and Parkinson’s.
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Mr Murray said: “The government has spoken to the vendor today, and they did not believe that there were any purchases from the three listings before they were taken down.”
However, he said he could not guarantee 100% that no one could be identified from the data.
He said data sets including gender, age, month and year of birth, socio-economic status, lifestyle habits, and measures from biological samples were included.
He said it “would be wrong for me to assure 100% and UK Biobank could not assure 100% that you could not identify someone from this, but that would be a very advanced way in which that data would have to be used.”
Biobank said “all the data are de-identified; they do not contain any personally identifying information (such as names, addresses, dates of birth, and NHS numbers).”
Data legitimately downloaded by research institutions
Mr Murray said the information had been legitimately downloaded by three research institutions in China.
They have since had their access revoked and the government is working to establish how the breach occurred.
‘Clear breach of contract
Professor Sir Rory Collins, chief executive and principal investigator of UK Biobank, said it took the protection of participant data “extremely seriously” and had tightened security.
“Last week, we found that de-identified participant data made available to researchers at three academic institutions were listed for sale on a consumer website in China, owned by Alibaba,” he said.
“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.”
