As part of a wider rollout of the 100,000 Genomes Project, the DHSC announced an ambition to sequence 5m genomes in the UK by 2023 - with the long-term aim of developing ‘new tests and treatments for cancer and rare diseases’.
The NHS plans to introduce ‘genomic volunteering’, offering healthy people the chance to pay to have their DNA mapped on the condition that they share their data with researchers. Those who take part will be given a report predicting their risk of developing conditions like cancer or Alzheimer’s.
Outlining the plans last week, health and social care secretary Matt Hancock said the scheme would help unlock ‘life-saving treatments’ - but healthcare leaders have warned it could have significant unintended consequences for both GP workload and patient safety.
Speaking to The Times earlier this year, Mr Hancock said: ‘I’m determined to do all I can to harness this life-saving technology. So from this year seriously ill children and adults with genetic conditions, including cancer, will be offered DNA analysis as part of their routine care.
‘And while healthy people should not have this service free on the NHS, there are huge benefits to sequencing as many genomes as we can - every genome sequenced moves us a step closer to unlocking life-saving treatments. So alongside this we’re introducing genomic volunteering, offering people the chance to pay to have their DNA mapped in return for voluntarily donating their anonymised data to help researchers develop treatments that will benefit everyone in the future.’
Addressing his comments in a health and social care committee meeting, Dr Philippa Whitford MP questioned Mr Hancock over the implications of the scheme.
Referencing the findings of the initial 100,000 Genomes Project - which succeeded in sequencing the entire genetic code of 85,000 people (totalling 100,000 genomes) in December 2018 - Dr Whitford said: ‘[You’re] talking about opening up genome analysis of healthy people to 5m and my understanding is that the initial 100,000 test [resulted in] one in five [participants being] found to have something ‘abnormal’.
‘Is that not suddenly just going to dump 1m worried well patients into the NHS? Is that not a concern that you would have?’
Mr Hancock insisted he wasn’t worried. ‘Healthy people who have their genomes sequenced can find problems that they didn’t know previously existed and that allows for them to either change behaviours, take preventative treatment or otherwise take action that can reduce the long-term pressure,’ he said. ‘The key is this has to be done properly... Ultimately [it] will reduce demands by supporting the prevention of illness.’
Committee member and GP Dr Paul Williams MP said he was ‘not convinced’ by Mr Hancock’s assurances, adding that the scheme could lead to ‘a huge additional burden of worried well in a relatively short period of time’.
‘Anyone in primary care knows that when people go privately to get a whole body scan they turn up at their GP saying: "What does this mean?",' he said. ‘So surely bringing the worried well into looking at their genomes completely out of context is actually going to add an enormous pressure without actually having solved the basic needs of the NHS first?’
Mr Hancock said: ‘If part of the package that’s put together allows for this... to include the counselling and the appropriate understanding of the results then you can get the upsides while mitigating with those concerns.’
RCGP chair Professor Helen Stokes-Lampard raised concerns over ‘ethical issues’ related to the genomic volunteering programme.
‘A lot of things that will be picked up by genetic testing will be unimportant or of dubious value, or are as yet not understood by professionals, and these could leave people unnecessarily confused and distressed,’ she said.
Professor Stokes-Lampard said that GPs would require ‘up-front training’ to learn about the implications of various results, and highlighted the importance of aftercare in instances where someone is found to have an increased risk of developing a serious or life-changing illness.
A DHSC spokesperson said there was ‘no evidence that genetic testing places extra pressure on health systems’.