Your Relative Has FH and You've Been Offered a Test

A family member has been diagnosed with familial hypercholesterolaemia — usually shortened to FH — and now the clinic has written to you, or asked that relative to pass on a message, offering you a test. The question that stops many people in their tracks is whether they need testing at all, and whether being tested could count against them for life insurance. For FH specifically, the answer is reassuring, and it should not be the thing that decides whether you accept the test: a predictive FH genetic result cannot be asked for on a UK life insurance application, so the test itself does not change your position with an insurer.

Cascade testing is the name for what the clinic is offering. When one person is diagnosed with FH, the recommended next step is to offer testing to their close blood relatives, because FH is inherited and the fault is worth finding early. You have been contacted because you are one of those relatives.

The short version is this. FH is common enough to run through families, serious enough to be worth catching, and — crucially — very treatable once it is found. The insurance worry that makes people hesitate is, in this case, largely misplaced, and declining the test to protect a future application does not actually protect anything.

The short answer: take the test, and do not let insurance be the reason you don't

People weighing up an FH test often carry a piece of advice imported from the United States, where genetic results can affect life cover in some states. In the UK the position is different, and for FH it points clearly the other way. The result of a predictive FH test is protected: an insurer cannot ask you for it and cannot use it. So the single thing people are frightened of — that a positive result will follow them onto every future application — does not happen here.

What that leaves is a straightforward clinical decision. FH quietly raises your cholesterol from birth and, left untreated, damages your arteries over decades, raising the risk of heart disease earlier than it would otherwise come. Finding it means you can treat it. That is the entire purpose of the clinic's offer, and the insurance answer removes the main reason people give for turning it down.

What FH is and why finding it early matters

Familial hypercholesterolaemia is an inherited condition that keeps the level of low-density lipoprotein — "bad" cholesterol — high from early life, regardless of diet. It is not the same as the raised cholesterol that can come from lifestyle in middle age. Because it has been present since birth, the arteries are exposed to high cholesterol for far longer, and without treatment that long exposure brings forward the risk of coronary heart disease.

FH is one of the more common inherited conditions, and it follows a straightforward pattern: each child of an affected parent has a one-in-two chance of inheriting the same fault. That is why the clinic works outwards through the blood relatives rather than waiting for symptoms — the odds within a family are high enough that testing close relatives reliably turns up the other carriers.

The reason clinicians pursue it so actively is that FH is highly manageable once identified. Cholesterol-lowering treatment, often started young and continued for life, alongside advice on the other things that affect heart risk, can bring a person's outlook much closer to normal. The tragedy of undiagnosed FH is that the first sign can be a heart attack that early treatment might have prevented. That is why a family diagnosis triggers an active search for the other people carrying the same fault, rather than a wait to see who develops symptoms.

If your worry is rooted in a pattern you have already seen — the men in the family having heart attacks in their forties and fifties, for instance — that pattern is exactly what an FH diagnosis can explain and act on, and we look at it directly in what it means when your grandad and your dad both had heart attacks.

What cascade testing actually involves

Cascade testing is a deliberately simple idea. When someone is diagnosed with FH, the National Institute for Health and Care Excellence recommends offering a DNA test to their first-degree biological relatives — parents, brothers and sisters, and children — and then extending outwards to further relatives as each new carrier is found. It cascades through the family, one branch at a time, following the biology.

For you, in practice, it usually means a conversation with a specialist service and a blood sample for the DNA test, which looks for the specific fault already identified in your diagnosed relative. Because the family's exact fault is known, the test is looking for one particular thing rather than searching blind, which makes the result clear-cut. If it is found, you carry FH; if it is not, you do not carry that family fault. Either way you leave the process knowing where you stand, which is the whole point.

The insurance question, answered for FH

Here is the part that brought you to this page. The rules that govern whether an insurer can see a genetic result are set out in the Code on Genetic Testing and Insurance, an agreement between the government and the insurance industry. Under it, an insurer will not ask for, and you do not have to disclose, the result of a predictive genetic test — and an FH test is exactly that.

There is only one exception anywhere in the system: Huntington's disease, and only where the total life cover applied for is above £500,000. FH is not on that list, at any level of cover. So a positive FH DNA result is not something a life insurer can require or take into account, no matter how much cover you apply for.

Source: HM Government and the Association of British Insurers, Code on Genetic Testing and Insurance (2018).

The same Code covers critical illness cover and income protection as well as life insurance, each with its own separate financial limits, and no genetic result is currently approved for use with those products either. So the protection you have is not a quirk of one policy type; it runs across the main forms of protection a family tends to buy. What an insurer weighs for any of them is your health and your history, not your DNA result.

This is why declining the test "to be safe" does not work as insurance strategy. The result you are trying to keep off the form is already off the form by law. If you took a policy out after testing and want to understand how that timing sits with the rules, we cover it in what happens when you are tested after your policy has already started.

What an insurer can still ask, and why the test does not change it

The protection covers the DNA result, not your general health. An insurer can, and routinely does, ask about your cholesterol level and any medication you take. This is where people get confused, so it is worth being precise about what actually changes when you take the test — and the answer is: nothing that an insurer sees.

If you have FH, your cholesterol is raised whether or not anyone has run a DNA test. The test does not create the high cholesterol; it explains it. A cholesterol reading is a medical fact that already exists in your body and may already be in your records. Similarly, if you are prescribed cholesterol-lowering treatment, that is disclosable medical history — but it is also protective, and an underwriter reads "raised cholesterol, treated and controlled" very differently from "raised cholesterol, untreated". So the honest comparison is not "test and risk disclosure" against "don't test and stay clean". It is "know and treat" against "not know and leave it". The subtlety of a diagnosis reached on a cholesterol reading versus one confirmed on DNA is worth understanding in full, and we set it out in FH on a cholesterol test versus FH on a DNA test.

If you are about to apply for cover, it also helps to know what your GP is permitted to pass on when an insurer requests a report, which we explain in what your GP can actually tell a life insurer. When you are ready, you can get life insurance quotes and let an FCA-authorised broker take your real position — cholesterol, treatment and all — to the market. No outcome is guaranteed, because underwriting decides it, but treated FH is a familiar picture to insurers.

What happens if the test is positive

A positive result is not the bad news it can feel like in the moment. In practice it opens the door to treatment that is the entire reason the test exists. You would usually be offered cholesterol-lowering treatment, often from a relatively young age, together with lifestyle advice and ongoing monitoring of your cholesterol and heart health. The condition becomes something that is watched and managed rather than something waiting to surprise you.

And if the test comes back negative — if you have not inherited the family's fault — that is worth having too. It means the raised risk suggested by your relative's diagnosis does not apply to you, and you can stop wondering about it. A clear result in either direction is more useful than the open-ended uncertainty of never having been tested at all.

There is a knock-on effect for the next generation. Because FH is inherited, a positive result in you means the cascade may extend to your own children in turn, so that they too can be found and treated early if they carry the fault. That is how a single diagnosis in one relative gradually protects a whole family. Seen that way, the test is less a threat than a piece of information that lets everyone downstream act in time.

Across the UK: NICE, Scotland, Wales and Northern Ireland

The recommendation to offer cascade testing to close relatives comes from NICE, whose guidance applies in England and Wales. Scotland follows its own clinical guidance, and Northern Ireland its own arrangements, and there have been dedicated FH identification services in different parts of the UK. But the underlying principle — that a diagnosis in one person should lead to testing being offered to their close blood relatives — is common across all four nations.

The insurance position is uniform throughout. The Code on Genetic Testing and Insurance is UK-wide, so a predictive FH result is protected in Cardiff, Edinburgh and Belfast exactly as it is in England. Wherever you live, the two facts that should drive your decision are the same: the DNA result cannot reach an insurer, and the treatment on offer is worth having. The wider context of how inherited risk and the real odds are assessed sits in our hub on family history, inherited risk and the odds.

Frequently asked questions

What is cascade testing for familial hypercholesterolaemia?

When someone is diagnosed with FH, NICE recommends offering DNA testing to their close biological relatives, starting with parents, brothers, sisters and children. It identifies the people carrying the same inherited fault so that their cholesterol can be treated early, before it damages the arteries over decades.

Should insurance worry stop me being tested?

It should not. A predictive FH result cannot be asked for on a UK life insurance application, so the result itself does not change your position. What an insurer can ask about is your cholesterol level and any treatment, and those exist whether or not you take the DNA test — so declining the test hides nothing while costing you the chance to treat the condition.

What happens if the test is positive?

You would usually be offered cholesterol-lowering treatment, often from a young age, along with lifestyle advice and monitoring. Testing may then be offered to your own children in turn. Treatment is the whole point of the exercise, because FH is very manageable once it has been identified.