The National Data Guardian, Dr Nicola Byrne, has issued the following statement after news from the House of Commons today that UK Biobank participants’ health data has been advertised for sale by several sellers on Alibaba e-commerce platforms in China.
People who generously share their health data to benefit others through medical research rightly expect it to be kept safe and for there to be accountability when things go wrong.
Given this, I am profoundly concerned to learn that the confidential data participants entrusted to UK Biobank in good faith has been found available for sale online.
It is reassuring that immediate steps to secure data were taken quickly. This must now be matched by full transparency and accountability. Participants deserve clear answers from UK Biobank about what happened, why it happened, and what will change to prevent this happening again. Decisive action is now essential to maintain public confidence in responsibly governed health data research.
I am engaging with the Government to offer my advice and support.