Our new public dialogue considers the implications for whole genome sequencing for newborn screening
HVM was commissioned in September 2020 by Genomics England, the UK National Screening Committee and UK Research and Innovation’s Sciencewise programme to design a public dialogue on the implications of using whole genome sequencing as a technology for newborn screening.
The report is published today. We find that dialogue participants are broadly supportive of the use of whole genome sequencing (WGS) in newborn screening - with caveats. They expect proper consideration to be given to designing and planning any future use of this technology. This, they recommend, includes involving the public and ensuring appropriate resources, investment and safeguards are in place.
The dialogue was fascinating - working with 133 people who really invested in the process. Participants included a broadly reflective group of people from across the UK. In addition weighting was given to four groups who might have different perspectives to the wider population on these implications. These groups comprised people with Black, Asian or minority ethnic heritage; new and expectant parents; people with a family history of genetic conditions; and young adults.
The team at HVM is enormously proud to have contributed to the important thinking that needs to inform the considered approach called for by participants on the implications of wgs for newborn screening. A quotation from one participant shines a light on the importance of taking time over the next steps:
“Don’t mess this up. It’s a great opportunity but if you don’t do it properly it will fail at pilot stage. Make sure you get a decent cross section of people involved. Thank you for doing this amazing piece of work! ”