Authors: Louise Cameron and Dr Hilary Burton
As part of the National Screening Committee’s (NSC) triennial review of its processes, and in light of evolving applications of genetic technologies, the PHG Foundation undertook a literature review to identify international criteria for appraising genetic screening programmes and to set out the relevant ethical, legal and social (ELS) issues.
What we did
What we found
In our report we highlight the particular difficulties in meeting the existing criteria faced by those proposing a screening programme for rare disorders, where no associated intervention is available or where screening may be used for information giving, such as to inform reproductive choice in antenatal or preconception screening.
Based on our report’s recommendations, alongside those from a University of Warwick report and responses to a public consultation exercise, the committee concluded that the current criteria were robust but a few small changes were recommended to reflect the complexity of appraising genetic screening programmes. These included: