Critics question consent, clinical utility, and industry influence in UK's Our Future Health programme
By
McCartney M, Cohen D.
Summary
The BMJ investigates concerns about the UK's Our Future Health (OFH) programme, the country's largest ever health research initiative with 1.5 million participants and a goal of 5 million. While praised for its scale and inclusion of underrepresented groups, critics raise serious issues around informed consent, the use of genetic data, potential undue inducement via £10 vouchers, the return of polygenic risk scores with unclear clinical utility, and questions about who truly benefits from this industry-and-government-backed database behind an NHS-branded facade.
Source
Twitter / XCritics question consent, clinical utility, and industry influence in UK's Our Future Health programmebmj.comKey quotes
· 5 pulledDescribed by one observer as the UK Biobank 'on steroids,' OFH has become the UK's largest ever health research programme, recruiting more than 1.5 million participants in just two years
Privacy campaigners have questioned whether participants truly understand how their genetic material will be used and whether the gift voucher could amount to undue inducement
Others warn of the risks associated with returning complex polygenic risk scores of dubious clinical utility, especially in the absence of a clear NHS plan
Participants are told that their data, along with access to their NHS records, will help researchers make discoveries about conditions such as dementia, cancer, and heart disease
Behind the headline data, however, concerns persist
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