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DNA testing plans to ‘brand’ children at birth without their consent

DNA tests for newborns will be made available on the NHS, in a new pilot announced by the health secretary.

However, concerns have been raised that the plans would ‘brand’ patients at the beginning of their lives – and without their consent. 

The plans were discussed at the recent Genomics England Research Conference this week about a pilot allowing babies to have their DNA checked at birth to see their risk of inherited diseases, according to The Times.

Starting next year, the pilot is being carried out by Genomics England – a DHSC-owned genetics service – and the NHS. If successful, the project could be rolled out nationally within the next three years in addition to the standard heel prick test.

Officials from the pilot said to delegates on 4 November that the results of the test can ‘play out’ over a patient’s life.

The results of the whole genome sequencing will check for inherited diseases and any risk of developing conditions in later years and will be added to children’s medical records.

GPs have warned that it may increase anxiety in parents and GPs would find it difficult to give answers.

Dr Farzana Hussain, a GP in Newham and chair of Newham Central One network said: ‘To me, it feels like you’ve got a death sentence hanging over your head. 

‘[Parents] would inevitably want to come and see the GP. I don’t know, as a GP, what answer to give. I do think we are branding people at the beginning of their lives when they haven’t given their consent. I’m concerned about it leading to more anxiety when there’s actually no answer.’

She added: ‘Also, these babies are not giving consent, the parents are giving consent for [the test]. These tests will be on their file, so it may affect them if they want to get health insurance or a mortgage.’

However, at the conference Genomics England chief executive Chris Wigley said: ‘The benefits of this test can play out over the course of someone’s life.

‘Someone may have had their genome sequenced as a newborn and 25 years later they develop another health problem. We can use the same genomic data to assess, ‘Are they likely to have an adverse effect to this drug versus that drug?’

‘With Alzheimer’s disease, for example, we can generate insights for how someone is likely to respond to different treatments that they may encounter when they are 75, from the moment they are born. That is one of the most mind-blowing things from the insights we can derive from this information.’

Health secretary Matt Hancock said: ‘My ambition is that eventually, every child will be able to receive whole genome sequencing along with the heel prick test.

’We will give every child the best possible start in life by ensuring they get the best possible medical care as soon as they enter the world.

‘Predictive, preventative, personalised healthcare – that is the future of the NHS – and whole genome sequencing and genomics is going to play a huge part in that.’

Earlier last month, the RCGP warned GPs interpreting genetic tests results from commercial companies, saying that it is not GPs’ responsibility.

GPs also warned the Government that its recent plans to introduce genomic testing in five million patients could exacerbate GP workload and workforce problems.