Call to ban sharing of medical data after UK Biobank breach
The personal medical data of half a million people ended up on Chinese e-commerce website Alibaba
Pressure is being put on ministers to ban the sharing of the personal data of British citizens with China, after a huge data breach involved the private medical data of half a million people being listed on a Chinese website.
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The healthcare records of hundreds of thousands of volunteers at UK Biobank were put up for sale on a Chinese website on Thursday.
The incident occurred after researchers breached their contract with UK Biobank by downloading part of the dataset.
The database includes over 15 million biological samples, as well as decades’ worth of medical information on participants, GP records, DNA, and personal details including height, weight and blood pressure.
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Despite being anonymised, the data ended up for sale in three separate listings on the Chinese e-commerce site Alibaba.
It was later identified that the breach came from three Chinese institutions, whose access has now been revoked.
Following the incident, ministers have faced calls to revise data-sharing laws that do not presently restrict where personal information on Brits can be shared.
Science minister Ian Murray told parliament that UK Biobank had notified the government on Monday that its data had been identified as being listed on Alibaba.
In an emergency statement, he said: “Biobank told us that three listings that appeared to sell UK Biobank participation data had been identified. At least one of those three data sets appeared to contain data from all 500,000 UK Biobank volunteers.”
The data did not include the names, addresses, contact details or telephone numbers of participants.
However, it did contain the gender, month, year of birth, assessment centre data, attendance data, socioeconomic status and lifestyle habits.
Murray reassured parliament: “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.”
Currently, UK Biobank is open to researchers who can access the data for around £3,000 a year - including 5,000 researchers in China - according to the Times.
UK Biobank has referred itself to the Information Commissioner’s Office.
Professor Sir Rory Collins, Chief Executive and Principal Investigator of UK Biobank, said that the three listings were swiftly removed before a sale was made, describing a "clear breach" of contract, leading to their accounts being suspended.
Mr Collins said that the company has taken its research platform offline, as well as implement an automated ‘airlock’ that checks files and data continues at pace.
“We apologise for the concern this will cause and have already put in place technology, processes and a Board-led review to stop this happening again" he said.