Specialist Cautions That Claims of Human Diversity Foundation Accessing Confidential Data Might Undermine Trust in Scientific Integrity
Concerns have been raised regarding access to the UK Biobank, which contains genetic data and medical records for over 500,000 individuals, after an investigation suggested that a group of so-called “race scientists” might have acquired this data.
A senior scientist cautioned that the leadership overseeing the UK Biobank must exercise great care in ensuring proper protocols are followed regarding data access to maintain public trust.
The UK Biobank collects and shares anonymized genetic and medical data with researchers to facilitate scientific discoveries and advancements. However, a recent report by the Guardian revealed that a group called the Human Diversity Foundation (HDF), which conducts controversial research claiming to demonstrate fundamental racial differences, was covertly filmed discussing the UK Biobank’s data.
Mainstream geneticists have dismissed such research as unfounded and racially biased. The footage was obtained by an undercover activist from the anti-racism group Hope Not Hate and shared with media outlets.
Following the Guardian report, the Biobank released a statement refuting the claims and asserting that its investigation found no evidence of data misuse. It emphasized that discussions among the HDF likely revolved around publicly available statistics, not the anonymized data of participants.
However, in correspondence with a senior medical professional the day after the report, UK Biobank Chief Executive Prof. Sir Rory Collins indicated that investigations were ongoing. “To be cautious, we are conducting further inquiries to confirm whether any misuse of UK Biobank data has occurred,” he stated. “If we find that participant-level data has been accessed improperly or that unauthorized analyses have been conducted, we will pursue all available sanctions, including legal actions.”
This statement seemed at odds with the Biobank’s earlier announcement regarding the conclusion of its investigation. When questioned about the inconsistency, a spokesperson clarified that there was no contradiction. They stated, “We conducted an extensive investigation, including a third-party review of the internet and dark web, and found no evidence of these data being accessible to unauthorized researchers. However, new information could prompt us to investigate further.” The initial conclusions were partially based on an analysis of a segment of the transcript from the undercover footage, which raised doubts about claims of accessing participant-level data.
Nevertheless, two senior geneticists and two health data experts who reviewed the same transcript expressed concern that terminology used by HDF researchers could indicate access to sensitive data.
David Curtis, a professor at University College London, warned that any implication of sensitive data access could undermine public trust in both the Biobank and the scientific community. He criticized Biobank for potentially dismissing serious concerns too quickly. “A more appropriate response would have been to acknowledge these allegations as troubling and to initiate an external investigation,” he said.
Ethical and Medical Considerations
The investigation by Hope Not Hate also captured representatives from a US startup, Heliospect Genomics, describing Biobank data as a valuable resource for predicting traits such as IQ, sex, height, and risks for obesity or mental illness in human embryos. The company claims to assist couples with embryo testing during IVF procedures and has collaborated with numerous families.
Experts highlight that such practices could raise significant ethical and medical questions.
Biobank’s stance on Heliospect’s use of its data has evolved amid inquiries. Initially, spokespeople indicated that Heliospect did not disclose embryo IQ screening as a commercial application. “All researchers applying to UK Biobank, whether academic or commercial, must clearly state the purpose of their research in their access application and subsequent annual reports,” a spokesperson remarked.
However, following new information from Heliospect, Biobank adjusted its position. “Heliospect confirmed that its analyses of our data have been used solely for their approved purpose to generate genetic risk scores for specific conditions and characteristics, and they are considering their findings for pre-implantation screening in accordance with US regulations,” it stated.
Heliospect clarified that Biobank does not require companies to disclose the exact commercial applications of their research.
Curtis called for more rigorous approval processes from Biobank. “They need to ensure that their approval mechanisms are stricter,” he stated.
Dr. Francesca Forzano, chair of the European Society of Human Genetics policy and ethics committee, urged for stronger security measures surrounding such datasets. “We call on those managing genomic datasets to ensure that access procedures are governed by robust and transparent guidelines, particularly regarding the public interest of proposed research. Secondary use of data should be strictly prohibited, and datasets should only be used for their original, approved purposes,” she said.
