Concerns have been raised about access to a scientific trove containing the genetic data and medical records of more than 500,000 people, after an investigation revealed that “race scientists” appeared to claim to have obtained the data.
A senior scientist has warned that the leadership responsible for the data held by UK Biobank “have to be very careful with ensuring that correct processes are followed” around access to the information in order to maintain public confidence.
Biobank holds the genetic data and medical records of more than 500,000 participants, which it shares in anonymised form with academics and researchers to support new scientific discoveries and medical advances.
Last week the Guardian reported that a group called the Human Diversity Foundation (HDF), which carries out pseudoscientific research purporting to prove fundamental differences between races, had been covertly filmed
discussing UK Biobank data.
Mainstream geneticists consider such research to be a racist pseudoscience without supporting evidence. The footage was obtained by an undercover activist from the anti-racism group Hope Not Hate and shared with journalists.
On the day of the Guardian’s publication, Biobank
issued a statement criticising the report and dismissing the findings. It said it had concluded what it called a “full” and “extensive” investigation that had found no evidence of misuse of UK Biobank data.
Biobank said it believed the group was discussing access to publicly available statistics that summarise the results of studies, rather than the anonymised data of the volunteers themselves.
However, in correspondence with a senior medic the following day, which has been seen by the Guardian, the Biobank chief executive, Prof Sir Rory Collins, said its inquiries were continuing.
“Out of an abundance of caution, we are pursuing further investigations to confirm whether or not there has been any misuse of UK Biobank data,” he said. “If we discover that participant-level data have been obtained illegitimately or that unapproved analyses have been conducted, we will use all available sanctions available to us (including legal measures).”
The comments appeared at odds with Biobank’s public announcement about the conclusion of its investigation. Asked about the discrepancy, a spokesperson said: “There is no contradiction between our statements. We launched an extensive investigation, including a third-party search of the internet and dark web, and found no evidence of these data being available to unapproved researchers. However, if we were to get new information it would enable us to investigate further.”
