Spinal Muscular Atrophy: Newborn Screening Test

Peter Dowd Excerpts

Monday 22nd June 2026 Westminster Hall

[Lewis Atkinson]

I thank the hon. Member for making one of his excellent interventions. Clearly health is a devolved matter in Northern Ireland and Wales, where screening is also not available, but the hon. Member is absolutely right. It would be difficult to explain to parents anywhere in the UK why this screening is increasingly standard practice internationally but is not available in every nation of the United Kingdom.

The petitioners are clear that all the conditions necessary to begin screening have been met. The test exists, the treatments exist and the evidence tells us that screening would save both lives and money. In the UK, screening is overseen by the independent UK National Screening Committee, which gives recommendations to Ministers. I was unable to meet with the committee in preparation for the debate, but I am sure that the Minister has had the benefit of its advice.

I recognise, as we all must, that the committee’s independence matters. However, its decision making and the way in which it balances risk, evidence and benefit must be subject to ministerial oversight. In this case in particular, there are questions about how those three elements have been balanced, and specifically about how far the committee seemingly required NHS-specific evidence when significant international evidence already exists.

When the National Screening Committee reviewed SMA for potential inclusion in the screening programme in 2018, the committee did not recommend screening, but campaigners like SMA UK did not walk away; they kept on doing the work. New cost-effectiveness modelling commissioned by the screening committee and published last year finds that screening for SMA is likely to be lifesaving and cost-effective.

[Peter Dowd (Bootle) (Lab)]

I congratulate my hon. Friend on introducing this debate and welcome your chairmanship of it, Mr Mundell. My hon. Friend referred earlier to 90% of children who are untreated potentially dying before their second birthday. That is a sobering statistic, but it is not a statistic; it is the reality of the lives of children, families and parents. Does my hon. Friend agree that we need to go faster sooner to roll out a comprehensive programme, as so many other countries have managed to do?

[Lewis Atkinson]

My hon. Friend is absolutely right. This is a matter of pace and of asking, “When?” not “If?” or “How?” because both those questions have already been answered.

I turn to the Government’s response. The previous Secretary of State for Health, my right hon. Friend the Member for Ilford North (Wes Streeting), met Jesy Nelson, the petitioner, in January. The Government accepted the case for an in-service evaluation and brought the date for that live NHS trial forward from January 2027 to October this year, when screening will begin to be rolled out. I, the petitioners and others welcome that, though there is a sadness that it has taken so long to get to that point.

We must, however, be honest about where that decision leaves us. As my hon. Friend the Member for Bootle (Peter Dowd) alludes to, the real argument now is about pace and fairness. The evaluation is funded. It will run at seven of England’s 13 screening laboratories, covering around 72% of births. The remaining six sites, which include the site that covers the constituents of my hon. Friend the Member for Portsmouth North (Amanda Martin), and which account for the remaining 28% of babies born in the UK every year, are not at present in the plan. That does not seem to be an accident but the design.

Put in human terms, of the 48 babies born with SMA in England each year around 35 would be diagnosed by the introduction of SMA screening in this evaluation but 13 would not: there would be 13 babies a year born with the same condition but on the wrong side of an arbitrary line that they did not choose who will go undiagnosed until damage is done. A baby born in one postcode will be screened, treated early and may walk, but a baby born in another postcode in the same week will not, and by the time anyone knows it may be too late. That is the postcode lottery that Jesy told me about, and which deeply concerns her, in its starkest form.

It is not about a difference in waiting times but about whether a child walks, breathes unaided or feeds normally for life. That is why Professor Muntoni’s assessment needs to be heard. He asked me specifically to put this on the record: he described a trial that deliberately leaves some babies unscreened to serve as a comparison group as—his word—“unethical”. We are withholding from some children a diagnosis that we are fully capable of making and that we know will help to shape their lives in order to gather data on something that Professor Muntoni considers already internationally proven. That is the view of not just one eminent clinician, I am told, but the wider SMA clinical community.

--- Later in debate ---

[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.