Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department has taken to ensure the National Screening Committee and the newborn screening programme appropriately consider rare diseases.

When assessing the case for newborn screening for rare diseases, as with all other diseases and conditions, the UK National Screening Committee (UK NSC) uses internationally recognised criteria, and a rigorous evidence review and consultation process. It is only where the UK NSC is confident that the offer to screen provides more good than harm that a screening programme is recommended.

The UK NSC is an independent scientific advisory committee which advises ministers and the National Health Service in all four countries on all aspects of population and targeted screening and supports implementation.