Following the genomic sequencing programme of 100,000 genomes[1] , the NHS wishes to make this available to healthy individuals on a voluntary basis. The aim is to enable scientists to “have a better understanding of diseases and human genetics” and to “gain an idea of the country’s health”, says Matt Hancock, UK Minister of Health.
The NHS already offers this sequencing free of charge to patients with genetic disorders or cancers. For the healthy, this will be a fee-paying service. It will cost “a few hundred pounds”, a price that is intended to be “competitive in the growing genome sequencing market”. These “genomic volunteers” will receive “a personalised report on their own DNA profile”, with predictions about their risk of developing cancer, dementia and Alzheimer’s disease. This will show whether the individual in question is “genetically predisposed” to such conditions. In return, patients will have to make all of their genomic data available to NHS researchers to “advance research”.
The project, managed by Genomics England, a company created and owned by the NHS, is still in the development phase. The NHS hopes to have it up and running within a year. The aim is to compile a database of one million sequenced DNAs over the next five years.
This project raises many questions. Anneke Lucassen, Chair of the British Society for Genetic Medicine, fears the introduction of two-tier medicine, a free service for some and a fee-paying service for others. Several scandals have already come to light in this area, which begs the question of data security for this sensitive information. General practitioners, for their part, have expressed concern about being overwhelmed by anxious patients: “You can use genetic sequencing to confirm a clinical picture, but you can’t use it to accurately predict what will happen in the future”, explains Lucassen.
For further reading:
England to offer routine DNA testing
Will genome sequencing lead to new treatments?
Genetic sequencing in hospitals: assessing cost-effectiveness
How can genomic data be protected?
[1] Extensive genome sequencing programme under way in the UK
Daily Mail, Jack Hurfurt (26/01/2019) – Healthy patients will be able to pay to have their DNA analysed under controversial plans which could predict the risk of cancer, dementia and Alzheimer’s
BBC (26/01/2019) – NHS to offer paid-for DNA tests if patients share data
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