The £500,000 Line in Huntington's Life Cover

There is a list of genetic test results that a UK life insurer is allowed to ask you for. The list has one entry on it. That entry is Huntington's disease, and it applies to life insurance only, and only where the cover you are applying for takes your total above £500,000. Below that number, or for any other condition, the answer to "do I have to give an insurer my predictive genetic test result" is simply no.

This is the opposite of what most people expect, and the opposite of what American articles about genetics and life insurance will tell you. In the United States, several states allow insurers to use predictive results. In the United Kingdom, the industry agreed with government to give almost all of them up. What survived that agreement is one line, one condition, one threshold.

If you are at risk of Huntington's disease and there is a life insurance application in front of you, that single line is the whole of what you need to understand. Everything else on the subject is either reassuring background or a distinction that only matters once you know where the line falls.

The one line on the list

The rules live in the Code on Genetic Testing and Insurance, an agreement between the UK government and the Association of British Insurers. Buried in its appendices is the list of approved tests — the results an insurer is permitted to ask about at all. In substance, that list reads as a single item: a predictive test for Huntington's disease, for life insurance, where the total sum assured is more than £500,000.

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

No other condition is on it. Not the cancer-risk genes such as BRCA. Not the inherited heart-rhythm disorders. Not the familial cancer syndromes. For every one of those, a predictive genetic result — a test that tells you about a risk before you have any symptoms — cannot be requested by a life insurer, cannot be taken into account, and does not have to be volunteered. Huntington's is alone on the page.

Why Huntington's specifically? Because it is the clearest case of a single-gene condition with a well-understood predictive test and a defined pattern of inheritance, which is why it became the one narrowly agreed exception rather than a general opening. The point of naming one condition, and no others, was to keep the exception from creeping.

What the £500,000 threshold actually is

The threshold is a figure for life cover, and it is a total. It is not a limit on any single policy — it is measured against the sum of the life cover you hold and are applying for. The mechanics of how policies are added together, including cover with other insurers, are set out in how cover held on your life by a business counts towards the total, and they matter because it is the total, not the new policy, that decides whether the line is crossed.

The important thing to hold on to is what the threshold does at each side of the line. Above £500,000 of total life cover, and only then, an insurer may ask an applicant who has had a predictive Huntington's test for the result. It does not have to; it is permitted to. Below £500,000, that permission does not exist. The result is off the table.

What happens below the line

For most applicants, this is where they are, and the position is clean. If your total life cover is at or under £500,000, a predictive Huntington's result cannot be asked for and you do not have to bring it up. You can leave it entirely out of the conversation, because the Code puts it there.

This is why many people who know they are at risk arrange their cover below the threshold on purpose. It is not a loophole and it is not something to feel uneasy about — it is the design working as intended, giving people a way to protect their families without surrendering a predictive result. If your needs genuinely run higher, the decision becomes a considered one, weighed against how much cover your dependants actually rely on.

What stays disclosable below the line is your own health as it actually is. A predictive result is protected; a diagnosis is not, and neither are symptoms. That distinction is important enough to take on its own.

A predictive result, a diagnosis and symptoms are three different things

People at risk of Huntington's often conflate these, and the difference decides what has to go on a form.

A predictive result is a genetic test taken while you are well, that tells you whether you carry the expanded gene and are therefore likely to develop the condition in future. This is the thing the Code protects. Below the threshold it is never askable; above it, it is askable for Huntington's alone.

A diagnosis is a clinical finding that you have the condition now. Symptoms — the movement, cognitive or psychiatric changes a doctor has assessed — are current medical facts. If an application asks about your symptoms, investigations, diagnoses or treatment, those questions are ordinary medical history and must be answered with reasonable care. The gene result is protected; the clinical picture is not.

So the honest position for someone who has tested positive but has no symptoms, applying below the threshold, is that they answer the health questions truthfully about a body that is currently well, and the predictive result stays out of it. The moment there is a diagnosis or symptoms a doctor has recorded, that is different, and it is disclosable because it is medicine, not genetics.

A family history question is a separate thing again. An insurer can ask whether relatives have had a condition, at what age, and how many were affected, and it can ask that about Huntington's as it can about anything else. Answering that a parent had Huntington's disease is disclosing family history, not a predictive result about you — the two are treated quite differently. What you are never obliged to reveal below the threshold is whether you yourself have been tested and what that test showed.

If you are at risk but have never tested

A great many people at risk of Huntington's choose not to take the predictive test at all. If you have never tested, there is no predictive result in existence, so there is nothing to ask for and nothing to withhold — at any level of cover. An insurer may still ask about your family history, as it can for any condition, and it may ask about your own symptoms and medical care. But a test you have not taken cannot be requested.

This has a real bearing on timing, and it is a genuinely personal decision rather than an insurance one. Whether to test is a matter for you and a clinical genetics service, weighing what you want to know against how it might affect your life. It should be driven by that, not by a fear about insurance, because below the threshold the insurance question largely answers itself. The NHS sets out the condition and the testing pathway at its Huntington's disease pages.

Critical illness and income protection

The Code covers more than life cover. It sets separate, lower financial limits for critical illness cover and for income protection. But here the position is even simpler, because no condition at all is currently approved for use with those products. Not Huntington's, not anything.

That means a predictive genetic result cannot be asked for on a critical illness or income protection application, whatever the amount of cover. The £500,000 Huntington's exception is specific to life insurance. On the other two products, the door is shut entirely. As ever, that protects the predictive result only — your own diagnoses, symptoms and treatment remain part of ordinary underwriting on any product.

Other inherited conditions are not on the list either

It is worth repeating the point from the other direction, because searches for individual conditions bring people here worried about the wrong thing. If your family carries an inherited heart-rhythm disorder such as long QT syndrome, a predictive genetic result for it is not askable — that condition is not on the list, and the position is set out in how life cover works with long QT syndrome in the family. The same is true of the inherited cancer-risk genes and the familial cancer syndromes. One line, one condition, one threshold — and everything else sits outside it.

What does still reach an underwriter, for any of these, is the clinical consequence of the condition where it exists: an abnormal heart trace, a surveillance programme, surgery, a diagnosis. Those are medicine and are disclosable if asked. But the gene test that predicts a risk before any of that has happened is protected, for everything except the single named exception. And if you are trying to size up your own risk before you apply, remember that a relative risk is not a personal certainty — the wider question of whether an early death is even inherited at all is taken up in what the twin studies actually show about heritable lifespan.

What this means if Huntington's is in your family

Bring it back to the practical. If Huntington's runs in your family and you need life cover, the shape of the decision is this. Below £500,000 of total cover, your predictive status — tested or untested, positive or negative — is not something an insurer can ask for or use. Keep your total under the line and the genetic question does not arise; your application turns on your actual health and the ordinary factors any application turns on.

If your family's real protection needs push above the line, that is the point to take proper advice, weigh the numbers, and structure things deliberately. You can get life insurance quotes and have an FCA-authorised broker work through it with the threshold in view. And because no online tool can convert a family history into a personal figure, it is worth reading why no UK calculator can price your family history before you trust one that claims to. What an insurer can and cannot obtain about you while assessing all of this is a separate question, answered in what a UK life insurer can actually see about your medical record.

Frequently asked questions

When can an insurer ask for a Huntington's test result?

Only for life insurance, and only where the total cover applied for exceeds £500,000. Huntington's disease is the sole entry on the list of approved tests in the Code on Genetic Testing and Insurance, and no other condition is currently approved for use with any insurance product. Below the threshold, or for any other condition, a predictive result cannot be requested or taken into account.

What if I apply for less than £500,000?

Then a predictive Huntington's result cannot be asked for or used, and you do not have to volunteer it. Many people at risk arrange their cover below the threshold for exactly that reason. Your own symptoms, diagnosis and medical care remain disclosable if the application asks about them, because those are ordinary medical history rather than a protected predictive result.

Does the threshold apply to critical illness cover?

The Code sets separate financial limits for critical illness and income protection, but no condition has been approved for use with those products, so a predictive result cannot be requested for them at all. Huntington's above £500,000 of life cover is the only approved use anywhere in the system. On critical illness and income protection the door is closed for every condition.