NHS abandons plan to let healthy people pay for DNA sequencing
Government plans to sell DNA sequencing to healthy people on condition that they share their results for medical research have been scrapped amid concerns it would create an inequitable two-tier health system.
Matt Hancock, who survived Boris Johnson’s cabinet makeover to keep his job as health secretary, announced the “genomic volunteers” plan in January, which included a paid-for option that would be offered to healthy people in England to boost medical knowledge and uncover new treatments.
But in a government green paper on preventing ill health that was quietly released on Monday evening, the plans have been dropped in favour of a new scheme to recruit 5 million healthy volunteers who will have their DNA read for free. Details of how people will sign up for the scheme have not yet been determined.
Hancock had argued with Theresa May that the green paper, which includes proposals to combat smoking, drinking and poor diet, should not be published so close to her successor’s appointment. He has faced accusations of burying the document after slipping the report out with no notice.
Under the original plan, Hancock said the NHS would offer DNA analysis to patients with rare genetic disorders and cancer as part of their routine care from this year. But in an effort to collect as many genomes as possible, healthy volunteers would also be allowed to pay for the service. In return for sharing their anonymised results, NHS scientists would attempt to predict their risk of future disease.
The proposal drew immediate fire from critics who said it would create a two-tier NHS, with those more able to pay standing to benefit the most. Researchers raised further concerns about sequencing the full genomes of healthy people where there are substantial doubts over the value of the information.
As part of a new scheme called Accelerating Detection of Disease (ADD), NHS scientists will sequence 5m genomes from non-paying volunteers, including those from underrepresented groups such as ethnic minorities, to better understand diseases from cancer and dementia to heart disease and mental health conditions. The Department of Health and Social Care confirmed the paid-for option had been dropped.
Prof Anneke Lucassen, a clinical geneticist at Southampton University and chair of the British Society for Genetic Medicine, welcomed the decision, but said it was still unclear how the whole genomes of non-paying healthy volunteers would be interpreted.
“My concern is that the public, and often professional, discourse around genetics is very deterministic. It sets out that predictions from a genetic code will be clear-cut and accurate, when the reality is often quite the opposite,” she said. “Using genetics to diagnose a rare disease in someone with particular signs, symptoms, or a family history is one thing, but predicting future disease from genetic variation without any of those clinical pointers is a messy and uncertain affair, with very little robust evidence from research.”
Hancock, who declared that a genetic test may have saved his life after it put his lifetime risk of prostate cancer at 15% compared with an average of 12%, is a case in point. His “misinter
pretation of his own genetic result is a good example of how this can go wrong and what the implications might be for the NHS with unnecessary appointments, surveillance and treatment requests,” Lucassen said.
Sarah Norcross, director of the Progress Educational Trust, a fertility and genomics charity, said she was delighted to hear that the government had listened to criticism of its genomic volunteers plan.
“The scheme threatened to create an inherently inequitable two-tier NHS, with people who can pay able to access genome sequencing and any benefits it may bring, while those who can’t afford the fee are denied these benefits. Now that payment has been removed from the equation, and the scheme has been combined with a programme involving the recruitment of up to 5 million healthy volunteers, it is more important than ever for the government to be clear about how and why people’s genomic data is obtained from them and results explained to them, minimising any potential for unnecessary worry.”