Concerns have emerged over potential unauthorized access to the UK Biobank, which holds genetic and medical data from over 500,000 individuals. An investigation suggested that the controversial group Human Diversity Foundation (HDF), accused of promoting “race science,” might have accessed this data.
Calls for Vigilance and Transparency
The UK Biobank provides anonymized genetic and medical data to researchers to drive scientific advancements. However, a report by The Guardian revealed that members of HDF, who claim to research racial differences, were filmed discussing the Biobank’s data. Mainstream geneticists widely dismiss HDF’s research as racially biased and scientifically unsound.
The footage, recorded by an activist from the anti-racism group Hope Not Hate, raised alarms about possible data misuse. In response, the UK Biobank released a statement denying any evidence of unauthorized access, asserting that HDF’s discussions likely involved publicly available statistics rather than participant-level data.
Despite this, UK Biobank Chief Executive Prof. Sir Rory Collins later stated that further inquiries were underway. He emphasized the organization’s commitment to addressing any misuse, warning that legal actions would follow if violations were confirmed.
Diverging Opinions and Public Trust
The Biobank’s initial denial and subsequent investigations appear inconsistent. A spokesperson clarified, “While our initial investigation found no evidence of data misuse, we remain open to reviewing new information.” Some experts, however, expressed concerns about the language used in HDF’s discussions, suggesting that sensitive data might have been accessed.
Prof. David Curtis of University College London warned that such allegations could erode public trust in the Biobank and the scientific community. He criticized the Biobank for appearing dismissive and called for an independent external investigation to ensure transparency and accountability.
Ethical Concerns Around Commercial Data Use
The investigation also revealed that representatives from Heliospect Genomics, a US-based startup, described UK Biobank data as valuable for predicting traits like IQ, height, and mental health risks in embryos. The company provides genetic screening for IVF procedures, raising ethical and medical concerns.
Initially, UK Biobank denied that Heliospect had disclosed embryo IQ testing as a research purpose. Later, it revised its stance, stating that Heliospect’s work involved generating genetic risk scores for approved conditions and characteristics, with future applications considered under US regulations.
Experts called for stricter oversight. Dr. Francesca Forzano, chair of the European Society of Human Genetics policy and ethics committee, advocated for robust security measures and clear guidelines governing access to genomic datasets. “Secondary use of data should be strictly prohibited, and datasets must only serve their original, approved purposes,” she emphasized.
Prof. Curtis echoed these concerns, urging UK Biobank to tighten its approval processes. “Stronger safeguards are essential to protect both scientific integrity and public trust,” he concluded.