What's happened
Jesy Nelson, former Little Mix singer, campaigns for adding spinal muscular atrophy (SMA) blood tests to UK newborn screening. Her twins, diagnosed late, have severe SMA. The UK government is reviewing plans for a pilot program, amid calls for universal screening following recent Scottish decisions and international standards.
What's behind the headline?
The push for universal SMA screening in the UK reflects a shift driven by medical advances and advocacy. The current NHS pilot, which excludes some babies to serve as a control group, faces ethical criticism for potentially delaying diagnosis. The Scottish decision to include SMA screening signals a regional divergence that could influence national policy. The UK government’s cautious approach, balancing ethical concerns with the potential for life-saving early treatment, suggests that a broader rollout is likely but will require overcoming bureaucratic and ethical hurdles. The case of Jesy Nelson’s twins highlights the real-world impact of delayed diagnosis, emphasizing the importance of early detection. Internationally, countries like the US and parts of Europe already screen for SMA, setting a precedent that the UK may follow. The next steps will involve evaluating the outcomes of the Scottish decision and the ongoing NHS pilot, with a probable move toward full inclusion of SMA in the UK’s newborn screening program within the next few years. This policy shift could significantly improve early treatment access and outcomes for SMA patients, but ethical debates about testing all newborns remain central to the decision-making process.
What the papers say
The Mirror articles by Martin Bagot and Hilary Brueck provide a comprehensive overview of Jesy Nelson’s advocacy and the UK government’s cautious review process. Bagot highlights the ethical concerns surrounding the current NHS pilot, which excludes some babies to serve as a control group, and notes Scotland’s recent decision to implement universal screening. Brueck discusses the broader context of health equity, emphasizing how early detection can dramatically improve outcomes and reduce long-term disability. Both sources underscore the tension between ethical considerations and the urgent need for early diagnosis, with Bagot quoting Health Secretary Mr. Streeting on the ongoing review and potential expansion of screening. The articles collectively portray a UK at a crossroads, balancing innovation with ethics, and reflect a growing international consensus on the importance of early SMA detection.
How we got here
Since 2018, the UK has decided not to include SMA in routine newborn screening, citing ethical concerns over pilot design. However, since 2019, three treatments have become available on the NHS that can effectively cure or manage SMA if administered early. Scotland has recently decided to implement universal screening, prompting renewed debate in England and Wales about the ethical and practical implications of early detection.
Go deeper
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Jessica Louise Nelson is an English singer, known for being a member of the British four-piece girl group Little Mix. The group was formed on the eighth series of The X Factor in 2011 and became the first group to win the competition.
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Wesley Paul William Streeting is a British politician serving as the Member of Parliament for Ilford North since 2015, and since 2020 as Shadow Minister for Schools.