We would like to hear from people who have donated their health information to UK Biobank. The Guardian has revealed that a group of ‘race science’ researchers claim to have obtained a ‘vast’ amount of data from the 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 kind researchers who passed the data on to them in that way, it is a huge breach of standards and should be investigated by the UK Biobank. That is the minimum that ordinary people can expect to ensure that their data is not used for nefarious purposes.”
We’d also like to hear people’s views on how their health information is used, shared and secured.
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Share your experience
Do you have any views on this potential breach of UK Biobank data controls?