UK Baby Health Screenings Being ‘Left Behind’
British babies are not given enough checks for rare but serious diseases and health conditions, according to a new report from charity Genetic Alliance UK.
The NHS currently offers a blood test that screens for up to nine conditions, but many European countries offer tests for more than 20, while the US checks for more than 50.
Genetic Alliance UK has said affordable ways of expanding current testing exist but are not being used.
What is the testing for?
The test is carried out by taking a sample of a baby’s blood when it is about five days old – known as the heel prick test. The results are generally received within the baby’s first eight weeks after birth. Positive results will be given sooner.
Newborn screening allows clinicians to identify rare illnesses early enough to offer the most appropriate treatment in order to prevent severe disability and – in some cases – death, according to the NHS.
The testing is not compulsory but is highly recommended.
It screens newborn babies for conditions such as sickle cell disease, cystic fibrosis and congenital hypothyroidism.
Most babies test negative for the illnesses, but getting an early diagnosis means treatment can be started as soon as possible.
The risks of introducing new screenings – a responsibility for the UK National Screening Committee – include receiving misleading test results, which can lead to anxiety for the families of the babies involved.
UK screening “left behind”
Genetic Alliance UK chief executive, Jayne Spink, said: “The pace of adoption of new blood spot screening programmes in the UK has become so slow that we have been left behind by the majority of other high-income countries.
“It is painful to think of the unnecessarily long diagnostic pathways that some families in the UK must endure, and worse to think of the missed opportunities – including treatment.”
She added that the UK has to ensure that newborn screening “keeps pace with diagnosis in later life”, and that the potential of current technology and that of genomics must be embraced.
Genetic Alliance UK added that because diagnosis of some serious illnesses can sometimes take a number of years, parents are therefore unable to make an informed choice about having more children, who may also be at risk of these conditions.
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