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Medical data of half a million Britons listed for sale on Chinese website, government says | UK News


The medical data of half a million volunteers to Biobank, the UK’s health information database, has been offered for sale online, the government has said.

Technology minister Ian Murray told the Commons on Thursday the charity had told the government the data “had been advertised for sale by several sellers on Alibaba’s ecommerce platforms in China”.

He added the charity had said the data “did not contain participants, names, addresses, contact details or telephone numbers”.

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.

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).”

How were people recruited and what data was offered for sale?

UK Biobank recruited 500,000 participants aged 40-69 between the years of 2006 and 2010.

They would have lived within a 25-mile radius of one of 22 assessment centres across the UK and would have received their invite through the post or through their GP.

If they agreed to take part they would have attended a two to three-hour appointment at an assessment centre.

During the assessment, they would have completed a questionnaire about their lifestyle, medical history and nutrition.

They would have also had their physical measurements taken, as well as donated blood, urine and saliva samples.

Those taking part would also have agreed to regular online follow-ups, with some invited back for special projects such as heart and brain imaging, or wearing activity trackers.

In its statement, Biobank said the type of data offered for sale included:

• Population characteristics such as gender, age, month and year of birth;

• Assessment centre data including attendance date, socioeconomic status, lifestyle habits, mental health, self-reported medical history, cognitive function and physical measures;

• Measures from biological samples including haematology, biochemistry, metabolomic and proteomic;

• Online questionnaire data on sleep, diet, work environment and mental health;

• Health outcomes data on ICD-coded diseases, cancer diagnosis date etc.

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.”

He said the charity had temporarily closed access to the research platform.

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