TL;DR
Confidential health records of UK volunteers have appeared on Alibaba, prompting government concerns over further leaks. The science minister stated that the data is de-identified but warned of potential re-identification risks.
There have been further listings of confidential health records of UK volunteers on the Chinese website Alibaba since the breach reported last week and the government is braced for further leaks, the science minister has said.
Addressing a House of Lords debate on the attempted sale of data belonging to 500,000 UK Biobank volunteers, Patrick Vallance said the government has worked with Chinese officials to remove additional postings on the online marketplace.
“New listings will emerge – there have been additional listings posted since the government were made aware of the issue last week – and we continue to work with the Chinese government to remove them quickly,” Vallance said.
The data is “de-identified”, meaning it does not include names, addresses or precise dates of birth. Vallance said there was a “low probability” of re-identification, but the breach should nonetheless serve as a “real wake-up call” for researchers.
“It is increasingly possible to triangulate in large datasets and get close to identification, and that remains a very real risk,” he said.
Last month, the Guardian was able to re-identify a single participant based in a different UK Biobank dataset that had been leaked online using just their date of birth and the data of an operation.
The Lords debate comes after an emergency statement by Ian Murray, the technology minister, last Thursday, which revealed that half a million participants in the UK Biobank project had their health data put up for sale on Alibaba. UK Biobank learned of the breach from an anonymous whistle-blower. The data has since been taken down and officials do not believe there were any sales. All access to UK Biobank data has been temporarily suspended.
Vallance named the three Chinese institutions, whose researchers are understood to be behind the postings, as the Second Xiangya hospital, China-Japan Union hospital, and Beijing Chaoyang hospital.
Vallance praised the altruism of UK Biobank volunteers, whose data he said had paved the way for discoveries of genes that affect the risk of heart disease or cancer, and new ways of predicting dementia and understanding Covid-19.