Source: Sharecast
The UK Biobank is a non-profit charity, independent of government, which brings together data donated by its volunteer participants. This data is then shared with researchers globally "to make significant scientific discoveries that improve patient health".
Biobank has informed the government that the data was being offered on three separate listings on Alibaba. At least one of these datasets appeared to contain data from all 500,000 Biobank volunteers.
Technology minister Ian Murray said: "I want to reassure the House up front however, that Biobank have advised that this data did not contain participants’ names, addresses, contact details, or telephone numbers.
"The government has spoken to the vendor today and they do not believe that there were any purchases from the three listings before they were taken down."
The government said it worked with Biobank, the Chinese government and the vendor to ensure that the three listings had been removed. It also ensured that the Biobank charity revoked access to the research institutions identified as the source of the information.
Finally, it has asked that Biobank pause further access to its data until they have put in place a technical solution to prevent data from its current platform from being downloaded in this way again.
Biobank has referred itself to the Information Commissioner’s Office.
"We are still working with Biobank to ascertain from them the specific detail of what has happened," the government said.
"We have asked them to investigate how this data ended up for sale online as a priority. But I wanted to ensure that the House were aware of this incident and the action this government are taking."
