We would like to hear from people who donated their health information to UK Biobank. The Guardian has revealed that a group of “race science” researchers claim to have obtained a “large” haul of the data UK Biobank holds.
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 have been friendly researchers who have passed them the data that way that’s a huge breach of standards and it needs to be investigated by UK Biobank. That’s a minimum that everyday people should be able to expect that their data isn’t used for nefarious purposes.”
We’d also like to hear people’s thoughts on how their health data is used, shared, and kept secure.
Share your experience
Do you have a view on this possible breach of controls on UK Biobank data?
