Written questions

Spinal Muscular Atrophy: Screening

2026-06-10 · Department of Health and Social Care · 9131 · Official question

Ben Obese-Jecty

Question

To ask the Secretary of State for Health and Social Care, what discussions he has had with the UK National Screening Committee on its decision not to recommend screening for spinal muscular atrophy.

Answer

The Government recognises the challenges faced by those living with rare diseases and their families and is committed to improving outcomes. For very rare conditions, it is difficult to generate robust evidence to demonstrate the value of screening, becau...