UK Biobank admits 500,000 UK volunteers had personal health data for sale on Chinese website following warnings it could be used to ‘develop targeted weapons’
This was always the fear. The UK Biobank was made possible thanks to the trust of half a million volunteers and this world-leading project was based on the principle of global collaboration for the betterment of mankind. But it only takes one bad actor to ruin all that.
The UK Government has launched an investigation after volunteers’ personal health and genetic data was found listed for sale on Chinese website Alibaba. It had been legitimately downloaded by three research institutions in China which have since had their access revoked.
I visited the UK Biobank’s megalab in 2024 and was shown its vast stockpile of frozen DNA samples which I was told was helping to reveal the “black box” of human health and why some people develop diseases and others don’t.
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Later that year MI5 Director General Sir Ken McCallum warned that Beijing could pressure organisations and individuals “to carry out work on their behalf” if handed potentially sensitive data, echoing similar statements from multiple Western intelligence agencies. Now those fears may have come close to being realised.
Others in politics had been more extreme, with former Tory leader Sir Iain Duncan Smith warning that the Chinese Communist Party could seize upon UK Biobank data to “develop targeted weapons”.
Based on a nondescript industrial estate near Stockport, its main freezer stores 10 million samples at -80C, taken from kind-hearted volunteers recruited over two decades. Each has provided around 10,000 forms of information from whole genome sequencing and saliva, blood and urine samples, to regular dietary surveys, cognitive tests, stress levels, FitBit readings and their full medical histories.
Scientists apply for permission to access the data to carry out research into why certain people develop diseases such as dementia, cancers and Parkinson’s.
Amid the countless canisters of liquid nitrogen needed to keep samples so cold, lab technicians told me: “We can’t be experts in everything. We’re not researchers. We are a bank of data which can figure out why people get sick and how we can help them.”
This remarkable project allows the experts – from research institutions such as universities and drug companies – to apply to access the data in anonymised form, without names, addresses and dates of birth.
Applicants must demonstrate a specific purpose, such as understanding why a disease develops or to create a new drug to treat it. But there was always the concern it could be stolen or used to cause harm.
One of the joys of my job is that I get to speak to scientists who are the global leaders in their specific field. I am constantly amazed at how they embrace the possibility of being wrong.
Their ethos is that discoveries should be shared, rather than possessed by one nation or institution, and if necessary, proven wrong. It is this ethos which has driven the progression of humanity since the Enlightenment.
That is the principle behind the UK Biobank project which shares its vast dataset of biological, health and lifestyle information for no profit, only a small admin fee to cover costs. But scientists are generally quite a trusting bunch and today that trust has been broken.
Ministers have been told that no purchases were made from the three listings on the website which have been taken down, but this breach must act as a warning. Tellingly, ministers thanked the Chinese Government for their co-operation.
The Government insists any patient data is anonymised and is only shared with “legitimate researchers”. However the risk remains that through jigsaw identification, it can be de-anonymised.
The scientists must now seek outside help from the relevant authorities when deciding which researchers get to access this unique dataset. And all those involved need to be a little less trusting in future.