FAP in the Family: Colectomy, Surveillance and Cover

If familial adenomatous polyposis runs in your family, the question you bring to a life insurance application is different from the one most people bring, and it has a cleaner answer than you might fear. FAP is caused by an inherited fault in a single gene, and a UK life insurer cannot ask you for the result of a predictive genetic test that looked for it. That part is protected. What is not protected — what an insurer can and will ask about — is your own medical history, and for many people living with FAP that history includes years of colonoscopies and, at some point, major bowel surgery.

So the honest shape of the answer is a split. The gene result stays off the form. The colectomy and the surveillance do not. That may sound like bad news, but it is the opposite of the untreated picture, and understanding why is the key to the whole thing.

Untreated, FAP carries a near-certain risk. Treated — which for FAP means removing the part of the bowel that would otherwise turn cancerous — that near-certain risk is transformed into something an underwriter can actually assess. The surgery you may dread disclosing is, from the insurer's point of view, the very thing that changes the picture in your favour.

The short answer: the gene stays off the form, the surgery does not

Two different things get confused whenever genetics and insurance meet, and keeping them apart solves most of the worry. A predictive genetic test is one that looks at your DNA to see whether you carry a fault before it has caused any illness. A medical fact is something that has actually happened to your body — a symptom, an investigation, an operation, a diagnosis.

UK life insurers have agreed not to ask for or use predictive genetic results. So the DNA test that told you or your family that the FAP gene is present is off-limits to an underwriter. But an operation is not a gene result. It is medical history, and if the application asks about surgery, hospital admissions or investigations — and it will — you have to answer accurately. The paradox people miss is that this is fine, because the surgery is what protects you clinically, and its presence on your record tells the underwriter that the near-certain risk has been dealt with.

What FAP is, and why it is not an ordinary family history

Familial adenomatous polyposis is an inherited condition in which very large numbers of polyps develop in the lining of the bowel, often from a young age. It is not the same as simply having a relative who had bowel cancer. In classic FAP the number of polyps is so high, and appears so early, that without treatment bowel cancer becomes close to inevitable somewhere in adult life. That is why it is managed so actively.

Standard NHS management is not "wait and see". It is surveillance from a young age — regular examinations of the bowel to watch the polyps — followed by removal of the colon, an operation called a colectomy, at the point the clinical team judges right. Taking out the tissue that would otherwise turn cancerous removes most of the risk at its source. That is a fundamentally different situation from a general family history of cancer, where the risk is a raised probability rather than a near-certainty, and where there is usually no single decisive operation.

This distinction matters for insurance because underwriters do not treat all "family history of bowel cancer" the same way. A managed, single-gene condition with a clear surgical pathway is assessed on the specifics of that pathway. It is also worth knowing how the same protection applies to other inherited conditions in the family, whether that is a heart condition picked up when a relative with familial hypercholesterolaemia leads to your being offered a test, or the difference between a diagnosis reached on a blood test and one reached on DNA, which we cover in familial hypercholesterolaemia on a cholesterol test versus on a DNA test.

What an insurer can and cannot ask

The rules here are not left to each insurer's discretion. They are set out in the Code on Genetic Testing and Insurance, an agreement between the government and the insurance industry, and it is deliberately protective of people in your position.

Under the Code, an insurer will not ask for, and you do not have to disclose, the result of a predictive genetic test — including the APC-gene test that identifies FAP. There is a single, narrow exception in the whole system: Huntington's disease, and only where the total life cover applied for is above £500,000. FAP is not on that list, at any amount. So no matter how much cover you apply for, the predictive FAP result cannot be required.

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

The Code covers critical illness cover and income protection as well as life insurance, each with its own separate financial limits, and no condition is currently approved for use with those products. So the protection over your predictive result is not confined to one type of policy; it applies across the main forms of cover a family buys, while your medical history remains a fair question for any of them.

What the Code does not do is shield your medical history. The same application that cannot ask for your gene result can, and does, ask about operations, hospital stays, investigations and diagnoses. That is why the practical answer for FAP is never "you have nothing to declare" — it is "declare the medicine, not the gene". If you want to see, in general terms, exactly what a GP is able to pass to an insurer when a report is requested, we set it out in what your GP can actually tell a life insurer.

How a colectomy changes what the underwriter is looking at

Here is the reframing that tends to lift the dread. An underwriter assessing an untreated FAP carrier would be looking at a very high, essentially untreated future risk. An underwriter assessing someone who has had a risk-reducing colectomy is looking at a different thing entirely: a person whose highest-risk tissue has been removed and who is under active surveillance. The operation moves you from the first picture to the second.

That does not mean the surgery is invisible or irrelevant — it is significant medical history, and it will prompt questions. But those questions are the point. The insurer wants to know what was done, when it was done, what the follow-up looks like and whether any cancer was actually found, because the answers describe a managed situation rather than an open-ended risk. Applications from people who have had bowel surgery are assessed individually, not refused on sight, and the details do the work.

It is also why timing your application for after the surgery, rather than in the anxious gap before it, usually presents the strongest picture. The risk-reducing step is then done, recorded and behind you, and the underwriter is reading a resolved history rather than an open question.

Surveillance, and why ongoing monitoring is disclosable

FAP does not end at the colectomy. Even after the colon is removed, the condition can affect other parts of the digestive tract and requires lifelong monitoring, so most people continue with regular endoscopic surveillance and other checks. Those are ordinary medical facts, and if the application asks about ongoing investigations or specialist follow-up, they should be disclosed.

It helps to see surveillance the way an underwriter does, rather than as a black mark. Regular monitoring is evidence that the condition is being watched and managed, which is reassuring rather than alarming. What matters is answering the questions accurately and completely, taking the reasonable care the law expects, so that the picture on the form matches the picture in your notes. If you underwent testing or surgery only after a policy was already in place, the position is different again, and we explain it in what happens when you are tested after your policy has already started.

What to expect on the application

Realistically, an application with a FAP history is not a tick-box exercise, and it should not be presented to you as one. Expect detailed medical questions, and expect the insurer to ask your permission to obtain a GP report or a targeted medical report so it can see the surgery, the surveillance and the outcomes for itself. That is routine for significant medical history and is not a sign the answer will be no.

A few things make the process smoother. Know the year of your surgery and roughly what was done. Know who your surveillance is under and how often it happens. Be ready to say whether any cancer was ever found. And do not volunteer the gene result — there is no need, the Code does not expect it, and the application is about your medicine, not your DNA. If you took part in a study rather than ordinary NHS care, the rules on what you must say shift slightly, and we cover that in what you must disclose after joining a genomics study.

One thing is worth stating plainly, because it is where people tie themselves in knots. Taking reasonable care to answer honestly does not mean volunteering the gene result you are entitled to withhold, and it does not mean guessing at things you were never told. It means answering the questions the insurer actually asks, fully and accurately, from what you genuinely know. Get that balance right and a FAP history is simply a detailed medical file, not a reason to expect a refusal.

When you are ready to test the market, you can get life insurance quotes and let an FCA-authorised broker place your history with insurers who assess bowel surgery sympathetically, because approaches genuinely differ between companies. No one can promise you a particular outcome — that is decided by underwriting — but a managed FAP history is well within what the market is used to seeing.

Scotland and Northern Ireland

The insurance side of this is UK-wide. The Code on Genetic Testing and Insurance applies across the United Kingdom, so the protection of your predictive gene result is the same in Glasgow or Belfast as it is in Manchester. The clinical side is delivered by separate health services — NHS Scotland, and Health and Social Care in Northern Ireland — so the exact surveillance pathway and the specialist services you are referred to may look a little different depending on where you live.

None of those regional differences changes the underwriting logic. Wherever you were treated, the same split applies: the gene result cannot be asked for, and the surgery and surveillance are disclosable medical history. The broader map of how inherited risk is treated across the family sits in our hub on family history, inherited risk and the odds.

Frequently asked questions

What is familial adenomatous polyposis?

It is an inherited condition in which very large numbers of polyps develop in the bowel from a young age. Without treatment, bowel cancer becomes close to inevitable in adulthood, which is why surveillance from childhood and removal of the colon at the right time are standard NHS management rather than optional extras.

Can an insurer ask whether I have the FAP gene?

No. A predictive genetic result cannot be requested for UK life cover, because only Huntington's disease above £500,000 sits on the Code's list of exceptions. What an insurer can ask about is your own medical history, which for many people with FAP includes colonoscopies and major surgery, and those must be answered accurately.

Does having had a colectomy make cover impossible?

It does not put applications outside the market, but it is significant medical history and insurers assess it individually — looking at the surgery, the year it was carried out, the ongoing surveillance and whether any cancer was found. Expect detailed questions and a request for a GP report, and expect approaches to vary between companies.