Medical information of 500,000 participantsof one of the UK’s landmark scientific programmes, UK Biobank, were offered for sale online in China, the government has confirmed.
Technology minister Ian Murray said information of all members of the database was found listed for sale on the website Alibaba.
Murray told MPs the charity which runs UK Biobank had told the government about the breach on Monday. He said the information did not include names, addresses, contact details or telephone numbers.
However he said it could include gender, age, month and year of birth, socioeconomic status, lifestyle habits, and measures from biological samples.
The Biobank is a collection of health data offered by volunteers which has been used to help improvements in detection and treatment of dementia, some cancers and Parkinson’s.
It has collected intimate details – including whole body scans, DNA sequences and their medical records – from hundreds of thousands of volunteers for over two decades. The project has led to more than 18,000 scientific publications.
Participants were aged from 40 to 69 when they were recruited between 2006 and 2010.
UK Biobank said it was investigating the incident and thanked the UK and Chinese governments, as well as Alibaba, for support and cooperation.
“We understand that the existence of these listings, even temporarily, will be concerning to you,” Chief Executive Professor Sir Rory Collins said in a message to participants.
“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).”
Sir Rory told volunteers in his letter the data involved in the incident had been made available to researchers at three institutions.
He added the data was “swiftly” removed by Alibaba, following support from the UK and Chinese government, but the data’s appearance to a “clear breach of the contract signed by these academic institutions”.
“They, along with the individuals involved, have had their access suspended,” Sir Rory added.
Murray told MPs the government has been told no purchases were made from the three listings on the website.
Alibaba has been contacted for comment.
Hellbound and Down 