Our Future Health: consent, clinical risk, and industry issues plague the UK’s biggest ever health research programme

The UK’s flagship health research programme promises breakthroughs, but beneath an NHS branded facade, critics are asking who really benefits from this vast database, heavily backed by industry and government. Margaret McCartney and Deborah Cohen investigate As a research programme, Our Future Health (OFH) is a runaway success—at least on paper. Described 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, with a goal of reaching five million.1 Its scale and ambition are praiseworthy, especially for enrolling people from ethnic minority groups and low income backgrounds—communities often overlooked in medical research. 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. Researchers will use only deidentified data, for purposes only for “the public good.” Participants may later be asked whether they want personal feedback from their samples, including their DNA, that could “reveal health or disease risks.” Behind the headline data, however, concerns persist. To investigate the major issues The BMJ has spoken to the programme’s chief executive, Raghib Ali, as well as its critics. The first issue is consent. Volunteers can sign up through community pharmacies, mobile units, the blood transfusion service, or an NHS branded invitation promising new insights into their blood pressure and disease risk. In exchange for personal details and blood samples they receive a £10 shopping voucher. 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 …