UK Biobank Faces Scrutiny as Private Health Data Donated for Research Finds Its Way to Insurance Companies
A recent investigation by The Observer has revealed that sensitive health data from half a million UK citizens, initially donated for medical research, has been shared with insurance companies, contrary to previous assurances.
The UK Biobank, established in 2006 to support disease research, reportedly opened its extensive biomedical database to insurance sector firms multiple times between 2020 and 2023. This data was used by insurance consultancies and tech firms to develop digital tools aimed at predicting individuals' risks of chronic diseases.
The database, which includes millions of biological samples and various health-related information from 500,000 adult volunteers, has been a crucial resource for global researchers. However, concerns have been raised by geneticists, data privacy experts, and advocates regarding the vetting and ethical procedures at Biobank.
While Biobank claimed to strictly regulate data access for health-related projects, it did not explicitly inform participants about sharing data with insurance companies, contradicting public commitments made earlier. The project's initial promise, dating back to 2002, assured that data would not be provided to insurance companies due to fears of potential discrimination based on genetic makeup.
The Observer investigation found that Biobank's website, until February 2006, explicitly stated that insurance companies would not be allowed access to individual results or anonymized data. Biobank now contends that these commitments no longer apply, asserting that participants were provided with revised information, including leaflets and consent forms, upon enrollment.
The exact nature of the data shared with the insurance industry remains unclear, as Biobank has not routinely disclosed this information. Companies such as ReMark International, Lydia.ai, and Club Vita were among those granted access for projects related to disease prediction algorithms, personalised health scores, and longevity data analytics, respectively.
The revelation has prompted criticism from experts, with concerns about a potential breach of trust. Critics argue that the public commitments made by Biobank, including assurances of no access for insurance companies, should be upheld. The Information Commissioner's Office, the UK's data privacy watchdog, is currently reviewing the matter.
In response, Biobank rejected suggestions that data had been shared without consent and emphasised that researchers from various sectors, including insurance, were permitted access if they met stringent protocols. It claimed that such research aligned with health-related objectives and public interests, and that consultations with independent ethicists were conducted. Despite these assurances, questions about the impact on public trust and the clarity of communication to participants persist.