UK Biobank Data of 500K Listed for Sale in China
The UK government has confirmed that sensitive information from the UK Biobank, one of the world’s most significant medical research projects, was discovered listed for sale on the Chinese e-commerce giant Alibaba.
UK technology minister says data doesn’t include names or phone numbers
Technology Minister Ian Murray informed MPs that the data, which belongs to 500,000 participants, was flagged by the charity running the project this past Monday.
While the data did not include names or phone numbers, it offered a deep dive into the private lives of those involved, ranging from their DNA sequences to their socioeconomic status and lifestyle habits.
The UK Biobank is a treasure trove of health data used by scientists to hunt for cures for diseases like Parkinson’s and cancer.
Volunteers, who were between 40 and 69 years old when they joined from 2006 to 2010, have spent years providing blood samples, body scans, and detailed answers about their daily routines.
Minister Murray confirms at least three listings and says the risk of identification is low
Minister Ian Murray told the House of Commons that at least three separate listings were found online. According to a report by The National, Murray said: “At least one of these three data sets appear to contain data from all 500,000 UK Biobank volunteers.”
Although personally identifiable information, such as addresses and NHS numbers, was missing, the listings reportedly included age, gender, month and year of birth, and biological measures.
Murray admitted he could not guarantee that individuals couldn’t be identified through advanced methods, though the risk is considered low.
A breach of contract, not a hack: Chinese institutions accused of violating agreements
This wasn’t the work of a shadowy hacker group. Instead, the government says the data was originally obtained through “legitimate” channels. Three Chinese research institutions that had been granted official access to the database are accused of violating their agreements by trying to sell the information.
Biobank’s chief scientist, Prof Naomi Allen, expressed the charity’s anger over the situation. Speaking to the BBC, she said: “ultimately it’s the fault of these rogue researchers.”
She added that her team is “extremely cross” that the actions of a few individuals have compromised the reputation of the global scientific community.
Alibaba, Chinese government cooperate as IOC begins investigation
The listings have since been taken down, and the UK government thanked both Alibaba and the Chinese government for their cooperation.
UK Biobank has temporarily suspended access to its research platform while it implements a strict limit on the size of files that can be exported from it.
Daily monitoring of file exports for suspicious activity will also be introduced. The charity has also referred itself to the Information Commissioner’s Office (ICO) for a full investigation into how the data was managed.
Chief Executive Professor Sir Rory Collins has promised a “comprehensive and forensic board-led investigation” into the incident, and the government says it will soon issue new guidance on controlling data from research studies.
