Friday , December 4 2020

NHS to offer paid-for DNA tests if patients share data

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Health Secretary Matt Hancock said he wants healthy people to become "genomic volunteers" to help scientists better understand diseases and human genetics

People in England will be able to share their genes on the NHS.

Those taking part in the planned scheme will have a health report that can predict the risk of developing cancer or Alzheimer's.

Health Secretary Matt Hancock says he will help develop treatments "that will benefit everyone in the future."

But concerns have been raised over the plans by the chairwoman of the British Society for Genetic Medicine.

It is possible DNA tests could alert patients to issues in need of further investigation. All data would be shared with scientists anonymously.

'Unlocking treatments'

Mr Hancock said: "It is important to know that the NHS has a lot to offer.

"Every genome sequenced moves us a step closer to unlocking life-saving treatments."

The Department of Health said the project – which will be led by Genomic England, is a set up and owned by the NHS – is still in the development phase.

No detail has been provided on the launch date or how much the service would cost.

It follows the successful completion of the 100,000 Genomes Project in December 2018.

What is the 100,000 Genome Project?

  • Launched in 2012, the project reached its goal in December 2018
  • About 85,000 people had their entire genetic code (genome) sequenced. Because of this, the number of genomes totalled 100,000
  • One in four participants with rare diseases received a diagnosis for the first time

But Dr Anneke Lucassen, the chairwoman of the British Society for Genetic Medicine, said: "The NHS has always been free of the point of delivery.

"It has the potential to create a two-tier system."

And she warned: "You can use a genetic code to confirm a clinical picture, but you can not use it.

Dr Lucassen said the government had otherwise good and sensible plans for genetic medicine, lauding its commitment to collecting research data.

Genomics needs large data sets, ideally shared internationally.

The government has now announced plans to sequence at least one million whole genomes within five years.

In addition, DNA sequencing, the NHS routinely offers DNA analysis.


By Michelle Roberts, BBC health correspondent

This is not about looking for rare genetic diseases in people at very high risk. Those types of checks are already being offered for NHS patients.

The idea behind Matt Hancock's latest announcement is getting data from the general population to help scientists better understand the diseases and human genetics.

He wants healthy people to become "genomic volunteers" to help research.

From a sample of blood, experts can look for small changes or errors in our DNA – the genetic code of life.

The anonymized data will help build a picture of the nation's health and design life-saving new treatments.

Genomic volunteers would be able to receive a personalized report on their own unique DNA profile.

But there are a few things people should realize before they consent:

  • DNA tests will not necessarily give a clear or definitive result
  • Healthy people are unlikely to benefit directly from the testing
  • And tests can turn up
  • Volunteers may also take part in other research projects, depending on their test results

And there are still many unknowns:

  • How much will it cost?
  • Where will the testing be done?
  • How long will they wait for their results?
  • Could it affect my health insurance policy?

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