Spinal Muscular Atrophy: Newborn Screening Test

Debate between Sharon Hodgson and Peter Dowd

Monday 22nd June 2026 Westminster Hall

[Mrs Hodgson]

I have asked those very same questions. As it is such a broad trial, the small number that is not covered does lead me to ask those questions. I have not given up asking those questions, but for today, the answer is the same as the one I gave to my hon. Friend the Member for Newport West and Islwyn.

[Peter Dowd]

A group of SMA experts wrote an article in The Lancet in February 2025 entitled “The human toll of slow decisions”. They recommended that

“expert opinion and international evidence should be more thoroughly integrated into the decision-making process of NSCs”

and that

“the decision of independent bodies such as the NSC should be subject to scrutiny by the Ministry of Health, given the substantial effect of failing in the duty of care.”

The evidence and experience are there, but we are lagging behind. I hope the Minister agrees that we must stop taking a conservative approach to this. Children’s and families’ lives are at risk, and it has to stop.

[Mrs Hodgson]

I thank my hon. Friend for his passionate intervention. I say again that it does not fall on deaf ears.

The right hon. Member for Melton and Syston (Edward Argar) asked what steps can be taken to speed up the process. We will be working at pace. Again, I will be paying very close personal attention to that.

Let me refer to a few other comments that I have not touched on yet. My hon. Friend the Member for Sunderland Central asked about the unscreened community being used as a control or comparison group. I want to be very clear that those not included in the trial are not being used as a control or comparison group. Labs taking part in the study start to screen newborns for SMA in phases, and the labs act as the control before they start to screen.

My hon. Friend the Member for Blaydon and Consett (Liz Twist) asked when coverage will reach the whole of England. Again, this is about the six labs that are not covered. The Secretary of State is actively considering that, which is why I said that we are listening and working at pace.

My hon. Friend the Member for Newport West and Isl—[Laughter.] She asked whether we had spoken to Wales. It is a good job they do not send me to speak to Wales, because I cannot pronounce all the names! We work in close collaboration with the devolved Governments, who were all included in discussions about setting up the ISE.

The shadow Secretary of State, the right hon. Member for Daventry, asked a number of detailed questions. I will endeavour to write to him on those points. We have chosen areas with labs with the equipment needed to do the analysis, which is why I will write to my hon. Friend the Member for Portsmouth North about the generation study.

We must move forward with compassion for families, rigour in the evidence and determination to give every child the best possible start in life, and that is what will do. I thank all hon. Members for their excellent speeches and for the challenge about the pace and coverage of the clinical trial. I hear them all and feel their pain deeply. The House should believe me when I say that I asked all those questions while preparing for the debate. I commit to them all that I will continue to ask those questions on their behalf. Where we can go further and faster safely, I will push for that to be the case. This debate has played a very important part in that push. I thank Jesy, all the petitioners and all hon. Members for ensuring that this debate took place today.