A plan to sell gene sequencing services performed by the NHS to healthy people has been condemned by experts as leading to a two-tier system and potentially overwhelming services with the worried well, according to a report in The Times.
The plan is to allow people to pay for their DNA to be fully sequenced and a personal report produced and aims to provide an insight into future potential health problems.
Matt Hancock, Health and Social Care Secretary, told the commons health select committee that he believes that such large-scale sequencing will lead to a highly detailed prediction of the risks of conditions such as cancer and dementia.
The MPs on the committee warned that the scheme could swamp GPs with queries from the worried well and lead to inequality.
In a letter to The Times, experts in the field expressed concern. The signatories included Andrew Goddard, president of the Royal College of Physicians, Jo Martin, president of the Royal College of Pathologists and Helen Firth, chairwoman of the Joint Committee on Genomics in Medicine, wrote:
“Selling whole genome sequencing to healthy people breaches a core principle of the NHS. It will create two-tier access to services, where people who can pay are able to access services that are denied to those who cannot.”
There is also concern that this form of genetic testing breaches NHS guidance on mass checks and that unreliable information could lead to patients having needless drugs or surgery.
The Guardian reported that it was unclear whether people who opted for the service would be offered counselling. There is also doubt and over how the NHS will cope with the extra workload from people unduly worried and for those whose sequencing has turned up something to be concerned about.
Anneke Lucassen, the chairwoman of the British Society for Genetic Medicine, told the Times:
“There is still a lot of misunderstanding of what whole-genome sequencing can deliver. There is a view that it will give you clear clinical predictions and, most of the time, it will not.”
The sequencing of DNA has already opened up a whole new area of ethics in the medical profession. In late 2018, the Guardian reported on a legal case being brought against a St George’s hospital trust, in which a woman is suing doctors because they failed to tell her about her father’s fatal hereditary disease before she had her own child. The father had refused to allow the doctors to tell his daughter before she had the baby and the doctors were bound by patient confidentiality.
The Guardian quotes Anna Middleton, head of society and ethics research at the Wellcome Genome Campus in Cambridge:
“This could really change the way we do medicine, because it is about the duty that doctors have to share genetic test results with relatives and whether the duty exists in law,”
This project to allow large-scale whole genome sequencing could lead to many more cases with such major ethical dilemmas. Doctors will come under increasing pressure to consider not only their patients’ needs but also those of relatives who may share affected genes.
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