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Scientists comment on the launch of the Generation study, which involves newborn genetic testing for rare conditions.
Dr David Elliman, Clinical Advisor to UK National Screening Committee & NBS Screening Programme, and Consultant, Great Ormond Street Hospital, said:
“The Generation Study has the potential to enable children to be treated earlier and therefore have a better outcome for them and their families. On the surface, it may sound a ‘no-brainer’ that the NHS should offer this to all babies. However, there is very limited experience of testing babies before they have symptoms, as is the case here, and predicting what might have happened if they were not treated. As well as the children who benefit from testing, some children could end up being treated for a condition they do not have or for which they would not have needed treatment. In addition, there may be some children where the outcome of the test will be inconclusive, leaving parents with uncertainty about their child’s future health for many years. Therefore, it is important that the babies in this research study, who are suspected of having a health condition, are followed up carefully for some years to make sure that they have indeed benefitted from being tested and that their parents have not been put through unnecessary anxiety. Only with this sort of information can it be decided whether something like this should become routine.
“It is very important that parents realise that this does not replace the current newborn screening programme. The two programmes measure different things and are complementary. Missing out on the current tried and tested screening programme risks a baby with a serious condition being missed and coming to preventable harm.”
Declared interests
Dr David Elliman: “I work for the UK National Screening Committee and I sit on an advisory board for the Generation Study.”