Concerns have been raised over 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 obtain the data.
A senior scientist warned that the leadership responsible for the data held by UK Biobank “must be very careful to ensure correct processes are followed” around access to the information to maintain public trust.
Biobank holds the genetic data and medical records of more than 500,000 participants, who share it in anonymous 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 conducts pseudoscientific research purporting to prove fundamental differences between races, was secretly filmed British Biobank data discussed.
Mainstream geneticists consider such research 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 criticize the report and reject the findings. It said it had completed a “full” and “extensive” investigation which found no evidence of misuse of UK Biobank data.
Biobank said it believed the group was discussing access to publicly available statistics summarizing the results of studies, rather than the anonymous data of the volunteers themselves.
However, in correspondence with a senior medic the following day, seen by the Guardian, the Biobank’s chief executive, Prof Sir Rory Collins, said his inquiries were ongoing.
“Out of an abundance of caution, we are undertaking 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 has been obtained illegally or that unapproved analyzes have been performed, 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. When asked about the discrepancy, a spokesperson said: “There is no discrepancy between our statements. We launched an extensive investigation, including a third-party search of the Internet and dark web, and found no evidence that this data was available to non-approved researchers. However, if we were to get new information, it would enable us to investigate further.”
Biobank’s initial conclusions were based in part on analysis of a portion of the transcript of the undercover footage released by the Guardian. It said technical details in the transcript, such as file type, cast doubt on the suggestion that participant-level data, which is available only to approved researchers, was obtained.
However, two senior geneticists and two health data experts who reviewed the same transcript said that terms used by the HDF researchers in the undercover footage could refer to them accessing such sensitive data.
David Curtis, a professor of genetics, evolution and environment at University College London, warned that any suggestion of the group gaining access to sensitive genetic data would undermine public confidence not only in Biobank but in science more generally. can influence. He questioned whether Biobank was too quick to dismiss concerns.
“Perhaps an appropriate response would be that these allegations are concerning and we are investigating them, or that we have requested that an external person investigate them,” he said. “For them to say we had our data scientist look at it and they think everything is fine is not really good enough.”
Moral and medical questions
Separately, the Hope Not Hate investigation also recorded representatives of a US start-up, Heliospect Genomics, describing Biobank data as a “godsend” that allowed it to develop a system to predict traits such as IQ, gender and height. predict, as well as the risk of obesity or mental illness, in human embryos.
The company offers to help couples test their embryos as part of IVF treatment and has worked with more than a dozen families, according to the classified footage. Experts say such practices would raise a host of moral and medical questions.
Biobank’s position on Heliospect’s use of its data has changed over the course of the Guardian’s inquiries and there remains some confusion about Biobank’s access policies.
Its spokespeople told the Guardian that Heliospect had not disclosed the screening of embryos for IQ as an intended commercial application. “All researchers, whether academic or commercial, applying to UK Biobank are required to make the purpose of their research explicit in their application for access and subsequent annual reports,” the spokesperson said.
However, the next day, apparently after receiving new information from Heliospect, Biobank changed its position and issued a new statement. “Heliospect has confirmed that its analyzes of our data were used solely for their approved purpose of generating genetic risk scores for specific conditions and traits, and is investigating the use of their findings for pre-implantation screening in accordance with relevant regulations in the US where Heliospect is based,” it said.
Heliospect told the Guardian Biobank did not require companies to disclose the exact commercial applications of research.
Curtis questioned Biobank’s response. “I think they should have approval processes that are more stringent,” he said.
Dr Francesca Forzano, the chairman of the European Society of Human Genetics policy and ethics committee, called for stronger security processes around such data sets. She said: “We call on those who legally hold genomic data sets to ensure that access procedures are governed by robust and transparent processes, including how decisions are made about whether or not the proposed research is in the public interest. Secondary use of data must be strictly prohibited and the data set provided used only for the original, approved purpose.”
