Sarah Norcross, Director, PET (Progress Educational Trust), said:
Research commissioned by PET this year – conducted by Ipsos – shows that a majority of the UK public (53%) supports the idea of whole genome sequencing at birth, and just 10% of the UK public is opposed to the idea.
These are promising circumstances in which to launch the Newborn Genomes Programme research pilot. However, a number of practical and ethical challenges were raised at a series of lively public debates on newborn sequencing that PET produced recently, in partnership with Genomics England.
These ranged from concerns about pressure on the health service – in particular midwives – to a desire for reassurance on questions of data security. The research pilot must be sensitive to these challenges and proceed with caution, in order to retain and build on existing public support.
