Review the evidence and fund the addition of SMA to the Newborn Screening Test
This petition gathered 151,321 signatures between 9 February 2026 and 9 August 2026, according to the Parliament petitions site. The Government responded on 14 July 2026. MPs debated it in Westminster Hall on 22 June 2026.
The petition
The petition's creator is not named in the Petitions site's published record. Quoted in full from the UK Parliament petitions site.
Review the evidence and fund the addition of SMA to the Newborn Screening Test
We urge the UK Government to fund and help fast-track the process to add SMA to the NHS newborn heel-prick test. SMA is a rare genetic condition with devastating consequences if not treated early. Every baby should be screened at birth to allow early diagnosis and access to life-changing treatment.
SMA was one of the leading genetic causes of infant mortality: up to 90% of untreated babies either died before age two or required permanent ventilation. It is now treatable, but treatment is most effective before symptoms appear. Early diagnosis can give babies the chance at a life without severe disability. Without screening, many babies are diagnosed too late. The damage already caused to their mobility, breathing and swallowing cannot be reversed. Scotland has committed to piloting SMA newborn screening this year. All babies should have the same chance. No child should suffer avoidable harm.
The Government's response
The Government published its response on 14 July 2026; the petitions site lists the Department of Health and Social Care as responsible. Its summary:
The NHS is planning an in-service evaluation offering SMA screening to newborn babies in England. This will inform a decision on whether to extend the NHS newborn blood spot screening programme.
The opening 339 words of the 809-word response:
The Government is grateful to campaigners who have made a powerful case for doing more on screening for spinal muscular atrophy (SMA). We are committed to seeing more children with SMA not just surviving but thriving.
Ministers and the NHS in all four nations of the United Kingdom are advised on all screening matters by the UK National Screening Committee (UK NSC), an independent scientific advisory committee which is made up of leading medical and screening experts. Where the Committee is confident that to offer screening provides more good than harm, they recommend a screening programme. Ministers in each of the four nations then make a decision on whether to accept the recommendation.
As recommended by the UK NSC, we are working at pace to roll out an In-Service Evaluation (ISE) in NHS screening services in England. An ISE is used where a change in screening policy is justified by strong evidence, but important evidence gaps still remain that can only reasonably be filled by evaluation in a live NHS setting. The UK NSC uses ISEs to support its screening recommendation process and inform wider policy decisions about screening.
There are a number of areas where evidence gaps exist which an ISE of newborn screening for SMA will help to fill:
1. Feasibility
The ISE will test the optimum clinical pathway and test methodology within the context of a nationally delivered newborn blood spot programme in the NHS, ensuring the safe movement of babies through the screening pathway. This includes testing the logistics of administering a programme that is delivered consistently by multiple geographically separated and commissioned screening and genetics laboratories, treatment referral centres and IT systems, including the establishing of sustainable data collection systems for longer-term outcomes.
2. Acceptability
Work is required to understand the acceptability and experience of families of screened babies and the healthcare professionals involved in the screening pathway, for example with regard to the timing and mode of delivery of results. This will support future decision making on the optimal screening pathway.
3. Effectiveness
Read the full response on the petitions site.
Where the signatures came from
Signatures came from 650 constituencies. Measured against each constituency's electorate at the 2024 general election, the most came from Rayleigh and Wickford, with 8.1 signatures per 1,000 electors (623 in all).
150,429 of the signatures were from the UK and 892 from elsewhere, by the location signers gave.
| Constituency | Signatures | Electorate, July 2024 | Per 1,000 electors |
|---|---|---|---|
| Rayleigh and Wickford | 623 | 76,576 | 8.1 |
| Castle Point | 507 | 71,026 | 7.1 |
| Brentwood and Ongar | 519 | 75,352 | 6.9 |
| Blaenau Gwent and Rhymney | 457 | 70,153 | 6.5 |
| Rossendale and Darwen | 483 | 74,440 | 6.5 |
| Broxbourne | 472 | 75,210 | 6.3 |
| Old Bexley and Sidcup | 460 | 73,198 | 6.3 |
| Harlow | 461 | 74,683 | 6.2 |
| South Basildon and East Thurrock | 454 | 72,673 | 6.2 |
| Basildon and Billericay | 469 | 76,873 | 6.1 |
| Region | Signatures |
|---|---|
| South East | 24,262 |
| East of England | 19,910 |
| North West | 17,635 |
| South West | 13,390 |
| West Midlands | 13,105 |
| London | 12,205 |
| Yorkshire and The Humber | 12,118 |
| East Midlands | 11,286 |
| Scotland | 9,092 |
| Wales | 7,497 |
| North East | 6,535 |
| Northern Ireland | 2,419 |
Debate in Parliament
MPs debated the petition in Westminster Hall on 22 June 2026. Read the debate in Hansard. House of Commons Library debate pack.
Source and receipt
- https://petition.parliament.uk/petitions/755980.jsonUK Parliament Petitions API · read 2026-10-15 · SHA-256
3861c9f7a64a9c31… - The petition on petition.parliament.uk
The petition's words are its creator's and the response is the Government's; this site quotes both and gives no view on either. Signature counts can still change while a petition is open. To report an error, send a correction request.