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NHS 'genomic volunteers' won't be expected to pay for genome sequencing

29 July 2019
Appeared in BioNews 1008

Two new government publications reveal that plans to charge healthy volunteers for NHS genome sequencing have been scrapped.

According to the Accelerating Detection of Disease programme announcement and the Advancing our Health consultation document, and contrary to previous announcements (see BioNews 970 and 985), the 'genomic volunteers' announced by Health Secretary Matt Hancock and outlined in the 2018 Life Sciences Sector Deal 2 will not have to pay to have their genomes sequenced.

The Advancing our Health consultation document said:

'By 2023 to 2024, the UK will aim to carry out five million genomic analyses, including sequencing at least one million whole genomes from patients in the NHS and participants in the UK Biobank. Some of these genomic analyses will be provided by the ADD challenge, which will now incorporate the government’s commitment to develop a genomic volunteer service and will be free to participants.'

The newly announced Accelerating Detection of Disease (ADD) programme aims to recruit up to five million healthy people who will share their data to be used in research. However, the announcement does not specify that these volunteers will all have their genomes sequenced, although it says it will 'contribute to our UK-wide ambition to sequence five million genomes by 2023 to 2024'.

It is important to note that the five million genomes figure does not mean that five million people will have their genomes sequenced. For example, in cancer patients, two genomes are sequenced per patient: the somatic genome and the tumour genome.

Additionally, the target is for only one million whole genomes, the other four million are to be 'genomic analyses' which could be single-gene or SNP (single nucleotide polymorphism) tests, many of which could potentially be performed on a single individual's genome.

The Life Sciences Sector Deal 2, published in 2018, had said: 'Genomics England will undertake detailed development work on a new service to enable genomic volunteers to pay for a personalised report on their unique genetic makeup.'

Sarah Norcross, Director of the Progress Educational Trust (the charity which publishes BioNews), told the Guardian:

'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 five 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.'

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