Haemochromatosis Screening

Rachel Taylor Excerpts

Wednesday 25th June 2025 Commons Chamber

[Torcuil Crichton]

The hon. Gentleman’s interventions are always a blessing, never a curse. I have some information of particular interest to his part of the world later in my speech.

I have declared my interest, as I have haemochromatosis, but it is not just my experience, but that of my constituents and the make-up of my constituency in Na h-Eileanan an Iar that have spurred me to secure this debate. It is not all about me.

A groundbreaking DNA study headed by Professor Jim Flett Wilson of Edinburgh University discovered that the Western Isles are a hotspot for haemochromatosis, this genetic mutation that the body at some stage adopted for survival. People are at risk of developing the condition if both their parents have the faulty gene and they inherit one copy from each of them. They will not get haemochromatosis if only one of their parents carries the gene and they only get one copy, but there is a chance they could pass the gene on to their children. If people inherit two copies—that is, both their parents are carriers—they will not necessarily get haemochromatosis. About half of people with two copies of the faulty gene develop the condition, and it is not known exactly why.

What is known is that the Viking genes DNA study by Professor Jim Flett Wilson took DNA samples from islanders in Orkney, Shetland and the Western Isles, and it threw up some amazing discoveries. People wanted to find out if they had Viking heritage, and many sent in swab samples and filled in the questionnaires in sufficient numbers for the scientists to crunch the numbers. I did not do that myself. Feeling Viking by name and by nature, I did not think it necessary.

Analysis of the data, and cross-examination with other gene studies, showed that in Orkney and Shetland, participants in the study had rare and unique cancer genes, which led to them being alerted to their condition. The study saved lives and is credited with doing so. The good news for the Western Isles—for Na h-Eileanan an Iar—is that no rare cancer genes were found. While the results are still being finalised, it is clear that the Western Isles are a hotspot for haemochromatosis and inherited high cholesterol, which can lead to heart disease.

According to Professor Flett Wilson, the numbers in the Western Isles are sufficiently high to justify population-wide screening. For instance, one in 212 people in the south and east of England carry two copies of the faulty gene, as opposed to one in 62 in the Outer Hebrides.

[Rachel Taylor (North Warwickshire and Bedworth) (Lab)]

I am a member of the all-party parliamentary group on genetic haemochromatosis, and my constituent Lorraine asked me to attend the debate. She suffers from the disease, and has found a way to manage it by donating blood regularly. She is pleased that genetic testing enabled her to know about her condition so she did not suffer severe organ damage, which can affect many people with the disease. Does my hon. Friend agree that genetic testing for those who are more likely to be diagnosed is essential if we are to help people lead healthy lives without the need for medical intervention?

[Torcuil Crichton]

I do indeed agree. Haemochromatosis, although widespread, was not widely known about until very recently, but genetic testing, as well as simple ferritin level tests, will inform many more people. Early intervention is vital to preventing people from developing crippling illnesses which might otherwise be wrongly ascribed to a condition other than haemochromatosis.

It is not just people such as my hon. Friend’s constituent who are affected. In Northern Ireland—or the north of Ireland, depending on how we view our maps—the situation is even more stark than it is in the Western Isles. Among the population of “Ulster Scots”, if I can call them that, there is a one in 123 occurrence of two faulty copies of the gene, which is similar to the incidence in mainland Scotland. The Catholic community in the north-west of Ireland have the highest concentration in the British Isles: one in 54 carry two faulty copies. On the basis of Professor Flett Wilson’s work, we can predict that one in 94 men in the Western Isles will develop HCT, and one in 80 men of north-west Irish ancestry—and the Irish diaspora is present in constituencies in Scotland, in London and across the United Kingdom—may have the condition, perhaps undetected and perhaps mis-diagnosed, and are possibly suffering from the long list of illnesses associated with an iron overload.

In Orkney and Shetland, analysis of the Viking genes study uncovered rare cancers and lives were saved. In my constituency, people who were found to have the HCT gene have been alerted by letter. The figures for the Western Isles do not include people who did not take part in the study, but they constitute a timely warning about the advisability of screening, a procedure that is not expensive. In the Hebrides, it looks as though we should act on the spike in iron overload. Professor Flett Wilson has recommended islands-wide screening for this common blood condition, but I want to go further: I think that everyone in the Western Isles, or Na h-Eileanan an Iar, should be screened for too much iron in their blood, but I think they should also be offered DNA tests across the board to show what other inherited conditions they might have.