While some genetic testing is available before birth, it is currently only offered in newborns in certain cases… But proponents have argued that sequencing the whole genome – and for all newborns – offers greater opportunities to spot whether babies have an increased risk of particular diseases, potentially opening up the opportunity for early interventions from diet changes to gene therapy.
“There are probably about 600 conditions where there is a potential early life intervention, and these all present before your fifth birthday,” said [Genomics England’s Mark] Caulfield.
However experts say there are ethical conundrums around such a programme. They suggest it might lead to unnecessary anxiety and treatments, that not all conditions are currently treatable, and that it raises questions about how and when the results would be shared with the children. There are also concerns around privacy and whether the results would be as accurate for people from different ethnic backgrounds as they are for white people.
To gauge public attitudes to the screening, Genomics England with the UK National Screening Committee and Sciencewise undertook discussions with about 130 members of the British public… [The findings] suggest that whole genome sequencing of all newborns could have public support – with participants saying it could lead to a move towards a “more prevention-focused NHS”.