Genomic sequencing of English newborns raises big ethical questions

The National

3 days ago

At first glance, the promise to 'leapfrog killer diseases' by predicting illness before symptoms arise is seductive. However, the inevitable gathering of clinical information about incurable conditions before consent for that knowledge is possible is far less desirable. Good intentions won't mask that overreach.
READ MORE: Labour's welfare cuts 'to cost 300,000 Scots £500 per year' – Trussell
We, as citizens and therefore NHS patients, must distinguish between what is clinically useful now, and what could cause unintended harm later to future citizens.
There are serious, treatable conditions that warrant early detection, such as congenital adrenal hyperplasia, phenylketonuria, and medium-chain acyl-CoA dehydrogenase deficiency, already covered by the existing neonatal blood spot test. Others, like spinal muscular atrophy and severe combined immunodeficiency, might justifiably be added to this programme due to their treatability in infancy and tragic consequences if missed. However, full-genome sequencing is an entirely different kettle of fish, and one where children's future health profiles are shaped before they can understand their medical identity.
Data might be used (or, god forbid, leaked) in ways they neither consented to nor benefit from, as many conditions flagged through genome sequencing may not be actionable until adulthood, even if they clinically materialise at all. In these cases, deferring screening until the individual is Gillick competent not only respects autonomy, but avoids unnecessary medicalisation, psychological harm, and downstream discrimination.
READ MORE: EHRC changes guidance on single-sex toilets after legal challenge
Scotland has long taken a more precautionary approach to data governance, consent, and health service design. Yet decisions taken in England – particularly those involving genomic infrastructure, research frameworks, and health data integration – affect the NHS as a whole. If new models of care are built around this profiling, Scottish patients could be pressured to participate in UK-wide systems by default, and NHS Scotland might be forced to adopt models shaped around English data flows and private-sector partnerships.
That potential risk gains urgency when considering that more than half of Wes Streeting's campaign funding since entering parliament has come from private health interests. While there's no direct evidence of genomic firms funding policy, the climate is clear: expanding health data infrastructure creates lucrative opportunities for diagnostics, trials, and pharmaceutical development. Without robust regulation, public good may be compromised for private gain.
READ MORE: See the full list of 127 Labour MP rebels on UK welfare and Pip cuts
A more sensible and ethical approach for the UK Government to follow would be to:
• Reaffirm a commitment to proportionate, consent-based screening, recognising the fundamental difference between life-saving early detection and speculative risk profiling.
• Resist premature implementation of whole-genome sequencing in newborns without full public consultation and independent ethical oversight.
• Support the development of anonymous, aggregate data models – suitable for population health planning without compromising individual autonomy or privacy.
• Expand existing neonatal screening programmes only where early intervention is proven to change outcomes significantly, and where ethical and equitable delivery is achievable.
• Establish robust UK-wide legal protections on the use, storage, and re-identification of genomic data, offering explicit guarantees against insurance or employment discrimination.
If we truly value preventative care and personal empowerment, we must ensure these ideals are not compromised by haste or commercial capture. Progress in medicine should be grounded in consent, equity, and care, rather than outsourced potentially unaccountably.
Ron Lumiere
via email