Haemochromatosis Screening

Patricia Ferguson Excerpts

Wednesday 25th June 2025 Commons Chamber

[Torcuil Crichton]

I do not disagree with that. Screening would be revolutionary. It would save money for the NHS in the short term and the long term, and, more important, it would save lives and put us two decades ahead of the rest of the world in preventive medicine. It would be transformative for my constituency. It would be radical, but only as radical as plans to offer every baby in the UK whole genome sequencing within a decade, a plan backed by the Health Secretary. Genomics, like these tests, would put us on the front foot in preventive medicine, as the Minister well knows. Of course it would cost money—£650 million is earmarked for the boost to genomics by the Department of Health and Social Care—but a smaller and more defined pilot scheme to lead the way in preventive medicine is to hand with the samples of high levels of HCT in the Western Isles. Given the given the cost per head of screening, it is logical that starting in the places with the highest rate of faulty genes would be the most cost-effective option.

Initially at least, the Bill ought not to go to the national health service. The bill for gene testing in the Western Isles should be part of the community payback for the large-scale wind farm developments that are planned for the islands. There are already negotiations for community benefits, community funds and community shares in the many planned wind farm developments in rural Scotland. The renewables revolution is about saving the planet, but right now the consumer offer is simply to reduce bills. By properly harnessing the wealth of wind, we can not only make communities better off but transform the life chances and health chances of people and their children.

The Viking genes results are not limited to haemochromatosis; they also showed high levels of hypercholesterolaemia in the Western Isles. That is simply inherited high cholesterol —a gene fault—that leaves many islanders, and many of my constituents, with high cholesterol and many with heart conditions, which again could be avoided with predictive medicine and early lifestyle and diet changes.

[Patricia Ferguson (Glasgow West) (Lab)]

My hon. Friend makes an excellent point about the need to test in the Western Isles, and his solution of using the community payback from wind farms is an excellent idea. Would he want to go further thereafter and test more widely? My brother has haemochromatosis, and it was discovered completely by accident. The rest of the family were then tested, and one or two cousins were found to have it, although I fortunately do not. It is much more prevalent than any of us ever imagined, and I had never heard of it until my own brother was diagnosed.

[Torcuil Crichton]

My hon. Friend anticipates much of the remainder of my argument. As I said, the research and DNA testing in the islands could and should be paid for by community funds from large-scale renewable projects, just as similar screening projects proposed for Orkney and Shetland could be paid for by funding from wind farms there. From those discrete samples, much learning could be had, and then sampling and testing could be rolled out across not just the rest of Scotland but the rest of the UK.

Luckily for me, my siblings and I were spotted early but, as I said, if left untreated and undiagnosed this gene can lead to serious arthritic symptoms, liver cancer and heart disease, the consequences of which are often attributed to other conditions and lifestyle factors but could have been easily prevented by testing. Given the resources, we could test for a wide range of conditions and help this generation and future generations of islanders to live healthy lives. As my hon. Friend the Member for Glasgow West (Patricia Ferguson) said, if it works for a small, discrete population—there are only 21,000 adults in the island chain—the experience and lessons learned could be rolled out across the UK.

I know, as we all know, that health services in Scotland do not fall within the ambit of the Minister, but the future of healthcare is in all our hands, and I urge UK Ministers and their counterparts in Holyrood to seriously consider a pilot screening study in the Western Isles. There is a clearly identifiable risk from haemochromatosis, and we should use the lessons from that screening to roll out haemochromatosis screening across the rest of the UK.