UK Biobank project privacy concerns
I am aware many people with ME could be in this dataset after recent funding and research. As if we do not suffer enough.
On Thursday it was revealed that data belonging to UK Biobank participants was up for sale on three separate listings on the Chinese website Alibaba last week. At least one of the listings is thought to have contained data from all 500,000 volunteers. In all cases the data was “de-identified”, meaning names, addresses or precise dates of birth were not included.
While the records have since been removed, and no sales are thought to have been made, it is not the first time data protection concerns have been raised.
Last month the Guardian revealed numerous instances of participant health data being leaked online by researchers, which in some cases could be traced back to volunteers.
No webmentions were found.