UK Biobank chief Professor Sir Rory Collins said he was “angry” and “upset” after de-identified medical data from 500,000 volunteers were found listed for sale on a Chinese website, blaming the incident on “a few bad apples.”
The datasets, shared with researchers at three academic institutions, appeared for sale on Alibaba but were “swiftly” removed before any purchase was made, the government said. The institutions involved have since been banned from the platform.
Sir Rory said Biobank had temporarily suspended access to its online research platform, effectively “putting science on hold,” while extra safeguards are introduced to prevent a repeat.
Technology minister Ian Murray told MPs the leaked data did not include names, addresses or contact details, but could include gender, age, birth details, lifestyle habits and biological sample measures.
UK Biobank, which has helped research into dementia, cancer and Parkinson’s, holds health data such as DNA sequences, scans and medical records from volunteers recruited between 2006 and 2010.
Sir Rory said it was impossible to completely rule out participants being identified from de-identified data combined with other information, but stressed there was no evidence this had happened.
The charity has reported itself to the Information Commissioner’s Office, which is now making enquiries, while a full board-led investigation is also under way.
Author – Mohammed Najem