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Paid-for genome sequencing under discussion by NHS

4 February 2019
Appeared in BioNews 985

The UK's health secretary Matt Hancock has announced that the NHS is considering offering healthy people the opportunity to pay to have their genomes sequenced.

The 'genomic volunteers' would receive a report detailing their risk of developing conditions such as cancer or Alzheimer's and would donate their anonymised data to be used in researching diseases and developing treatments. The NHS Genomic Medicine Service already offers free genomic sequencing to people with certain serious conditions (see BioNews 957). 

'Genomics has the potential to transform healthcare,' said Hancock. '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 lifesaving treatments.' 

The suggestion is in line with Hancock's previously stated goal to sequence 5 million genomes in the next five years (see BioNews 970) and with the Life Sciences Sector Deal 2, published by the Department for Business, Energy and Industrial Strategy in December 2018, which said: 'Genomics England will undertake development work on a new service to enable genomic volunteers to pay for a personalised report on their unique genetic makeup. With permission, the genetic data will be made available to researchers and scientists'.

Genomics England said: 'There will be detailed development work and planning to include the likely content of such an analysis, how this may be delivered to volunteers, and the potential consequences and benefits for the NHS.' The government-owned company was established to undertake the 100,000 Genomes Project, which recently reached its goal of sequencing 100,000 patient genomes (see BioNews 979).

However, some experts have raised concerns over the amount of work this could create for the NHS, as well as the results being misinterpreted or inaccurate.

'We are talking about very sensitive personal data that needs to be understood and used responsibly, and it raises a lot of ethical issues. A lot of things that will be picked up by genetic testing will be unimportant or of dubious value,' said Professor Helen Stokes-Lampard, chair of the Royal College of General Practitioners.

Dr Anneke Lucassen, chair of the British Society for Genetic Medicine, said: 'You can use genetic code to confirm a clinical picture, but you can't use it to predict what will happen in the future very accurately.'

The exact cost of the test is still under consideration by the Department of Health and Social Care, reports The Guardian. The department is also considering whether this scheme would create a two-tier public health system because the NHS has always been free at the point of delivery.

In a letter to The Times, 11 experts including the president of the Royal College of Physicians and the chair of the UK National Screening Committee, expressed concern that '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.'

16 September 2019 - by Dr Maria Botcharova 
Seventeen former employees of a genetic testing company, Orig3n, have accused it of not meeting scientific standards and returning inaccurate results...
29 July 2019 - by Jen Willows 
Two new government publications reveal that plans to charge healthy volunteers for NHS genome sequencing have been scrapped...
4 March 2019 - by Jayne Spink 
In January, Matt Hancock, secretary of state for health and social care, revealed that Genomics England planned to develop a direct-to-consumer service for whole-genome sequencing, with provision for customers to donate their data for research purposes.
14 January 2019 - by Grace O'Regan 
The Long Term Plan announced by the NHS this week has detailed a proposal to offer whole-genome sequencing for all children with cancer in England...
10 December 2018 - by Shaoni Bhattacharya 
The UK reached its goal of sequencing 100,000 patient genomes last week...
8 October 2018 - by Dr Rosie Morley 
Plans to sequence five million genomes in the next five years were announced by the Secretary of State for Health and Social Care, Matt Hancock last week.
9 July 2018 - by Ruth Retassie 
Genomics England and the NHS will incorporate genome sequencing into routine care by establishing the Genomic Medicine Service...
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