Overview
- The government, which disclosed the issue in Parliament on Thursday, said three Alibaba listings offering UK Biobank data were removed with help from Chinese authorities and the vendor reported no sales.
- UK Biobank said the datasets were de-identified and did not include names, addresses, contact details, telephone numbers, or NHS numbers, though fields such as age and health outcomes may be present.
- The charity suspended access to its UK cloud research platform and revoked access for three identified academic institutions in China that had legitimately downloaded the data.
- Biobank is adding limits on file exports and new monitoring to spot suspicious downloads, plans an automated checking system by year-end, and has notified the Information Commissioner’s Office.
- The government plans new guidance on controlling research-study data, and outside experts warn repeated exposures could erode participant trust despite assurances and an apology from Biobank’s leadership.