Genomic sequencing of English newborns raises big ethical questions
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.
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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.
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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.
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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
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Here at the end of the train line on the west coast, nestled a few hundred metres from the beach, is where the sun sets on Britain and on life. The hospice in Weston-super-Mare could hardly be a better place to go: the bedrooms have doors onto a lush garden and there is even a specially adapted hot tub I would like to book. But every week two of the palliative care doctors who work here, Fiona Chiplen and Adam Baker, are asked, 'Doctor, can you help me die?' Every week they are asked to do what is at present against the law, though maybe not for much longer. 'We got asked twice this morning,' Baker says. We are sitting in a quiet room with multiple boxes of tissues: this building is a mix of sunniness and abundant tissue provision. This room has hosted many a difficult conversation but today it's a new one. Chiplen, a consultant in palliative medicine and Baker's boss, stands on the other side of the assisted dying debate to him. She is against, he is for. For years these colleagues have agreed in private to disagree. Chiplen in particular is concerned that if she went public her views would have a detrimental effect on her relationships with her patients. Yet now MPs have backed the assisted dying bill, which is undergoing House of Lords scrutiny, they are willing to argue with each other, in public, in the most open, kindest possible way. This is to find a path through the 'polarisation', which Chiplen says doesn't help at deathbeds. 'We understand there's a huge amount of hurt on both sides of the law,' Baker says. I ask how many dying patients they have each cared for. Chiplen has nearly two decades in the field, Baker three years, and both estimate 'in the thousands'. Chiplen says that when she began, 'I used to keep a list of all the patients I had cared for' in memoriam, but that became impossible. If they, with their jobs, and their respect for each other's decency and care, can't wrangle across the divide to make things better for everyone in a new British landscape with assisted dying then, Chiplen says, 'Who can?' Chiplen, aged 48 and with a soft Scottish accent, was drawn naturally into palliative care. Her first complex ethical quicksand came as a junior doctor. 'We had to resuscitate somebody and it was successful but the person was paralysed from the neck down,' she says. 'Of course you try to help someone but it was really quite traumatic. It had a big influence on my view of resuscitation.' Baker's entry into palliative care was more dramatic. At 35 he had spent seven years as an emergency medicine doctor, and says, 'It was all I wanted to do.' But he burnt out and says that 'a big part of that was a number of really horrible deaths'. Patients could die in corridors, they could die in the back of ambulances waiting outside. 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'And what was very humbling to see was that she reached those milestones where she had said, 'Life will be intolerable to me,' and yet it wasn't and she continued to find joy,' she says. This, for Chiplen, is a broader point: that some patients underestimate how much meaning they can find even when they are touching distance from death, 'whether that's somebody who's very poorly and bedbound or not. All people have value.' In the assisted dying bill patients must be judged to 'have capacity' to make the decision. She is concerned that patients would end their lives prematurely, worried to leave it too late and thereby be deemed too sleepy or confused. She also worries about those with depression, whose mental capacity may be muddled. Neither Chiplen nor Baker pretend that the other's points are simple to fix. They are now writing a book together on how thousands of dying patients can lead them to differing, and caring, viewpoints. I ask Baker whether this is partly a cost thing: is assisted dying cheaper than remedying our failure to offer everyone good end-of-life support? They both agree that palliative care — and their own hospice — struggles for funds. 'There are powerful financial arguments that are used to argue both sides but I might separate that from the patient experience,' Baker says. 'I've had so many conversations with people that want to talk of wanting it to all be over. None of them have ever come to me and tried to present that as a cost-saving equation.' If or when assisted dying becomes legal, will it feel difficult for Chiplen? 'It will feel really jarring,' Chiplen says. 'At the moment we have clarity. We are not allowed to do anything to hasten death. But when you look at other countries where assisted dying becomes legalised, I'm slightly shooting myself in the foot here, but there does tend to be a shift in acceptance.' • Where is assisted dying legal? 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