We would like to hear from people who have donated their health information to UK Biobank. The Guardian revealed that a group of “racial science” researchers claims to have acquired a “huge” collection of the data held by UK Biobank.
UK Biobank says research using its data must be “in the public interest”. Angela Saini, author of a book on race science, says: “If there were friendly researchers who passed on the data in this way, it is a huge breach of standards and should be investigated by UK Biobank. It is an everyday minimum people should be able to expect that their data will not be used for nefarious purposes.”
We’d also like to hear people’s thoughts about how their health data is used, shared and kept safe.
Share your experience
Do you have a view on this possible breach of controls on UK Biobank data?
