Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps his Department is taking to ensure the newborn screening programme screens for all life-threatening conditions with approved treatments.

The Government recognises the devastating impact of life-threatening rare diseases on children, families, and communities. The NHS Newborn Blood Spot (NBS) screening programme screens newborn babies for 10 rare but serious conditions and consistently achieves very high coverage, with the most recent figure at 98% in Quarter two of 2025/26.

We know how frightening it is for families to face the possibility of a serious condition in their newborn. Screening is an important tool, but it is only one of the ways we can reduce illness in babies. Some conditions can be prevented by supporting healthier pregnancies, for example by helping mothers to stop smoking, optimising management of diabetes and other long-term conditions, and ensuring timely antenatal care. For other conditions, there are not yet screening tests that are accurate enough, meaning some babies could undergo further tests and worry when the condition is unlikely to be present.

The UK National Screening Committee (UK NSC), which advises the Government on all screening matters, carefully weighs the likely benefits and possible harms of screening, and works with stakeholders through consultation, to ensure screening programmes are introduced only when they are the best way to support babies and their families.

The National Health Service is planning a large-scale in-service evaluation (ISE) of screening for spinal muscular atrophy (SMA) in newborn screening services. The ISE, which was due to start in January 2027, will now start three months earlier, in October 2026. The evidence from this ISE will inform a decision on whether to extend the NHS NBS screening programme and include screening for SMA.