Genetic test results and insurance: the Code on Genetic Testing

If you have had a genetic test, or you are thinking about having one, the question that matters for insurance is whether a company can demand the result and price your cover, or refuse you, on the basis of it. In the UK the answer for most protection insurance is no. Under a long-standing agreement between the Government and the insurance industry, insurers cannot require you to take a predictive genetic test, and for most policies they cannot ask you to disclose a predictive test result either¹.

The agreement, known as the Concordat and Moratorium on Genetics and Insurance, states plainly that customers will not be required to disclose the results of predictive genetic tests for policies up to £500,000 of life insurance¹. There is one exception: a predictive test for Huntington's disease must be disclosed for life insurance cover over £500,000². Below that limit, and for critical illness and income protection insurance, a predictive result you hold while showing no symptoms stays private.

What the agreement does not do is stop insurers asking about your health generally. You must still answer honestly about any diagnosis you have, your family history if asked, your treatment and your lifestyle. Answering all questions truthfully prevents the policy becoming void later². The rules on genetic tests sit on top of that duty of honesty, not instead of it.

What the agreement means for your insurance application

When you apply for life insurance or related protection cover, the insurer asks a series of medical questions and prices the policy from your answers. How much you pay depends on your age, health, lifestyle and how much cover you need, as well as the policy type, your family health history, the term, your job and any extras³. Insurers use risk data to calculate the likelihood of the event you are insuring against happening, and the more likely the event, the higher the premium⁴.

The genetics agreement draws a line around one part of that process. It applies to predictive genetic tests, which the Concordat defines as tests that examine the structure of chromosomes (cytogenetic tests) or detect abnormal patterns in the DNA of specific genes (molecular tests)¹. An insurer following the agreement cannot ask you to take one of these tests, and cannot demand the result of one you have already taken, within the financial limits described below.

That is very different from the ordinary medical questions. You will still be asked about your medical history, and in complex cases insurers may require a medical examination, often sending a specialist nurse to your home⁵. Your answers will be checked with your GP⁶. If you have a diagnosed condition, you must be honest about the diagnosis and the likely progression of the condition, or the policy may become void². What the agreement removes is the insurer's ability to reach into predictive genetic information you hold about your future health when you have no symptoms.

For someone weighing whether to have a genetic test, this matters in a practical way. The agreement means taking a predictive test does not, by itself, put your ability to buy protection insurance at risk within the limits. The dedicated guides to applying for cover and to how life insurance premiums are worked out explain the rest of the application process.

Which policies are covered: life, critical illness and income protection

The agreement covers the main types of protection insurance: life insurance and assurance, income protection, and critical illness cover⁷. These are the policies that pay out on death, on diagnosis of a serious illness, or when illness or injury stops you working. Some policies pay out if you are covered for life insurance for terminal illnesses, mortgage payment protection, critical illness cover or income protection insurance⁸.

Life insurance itself is a policy that pays money to your family or friends when you die⁹. It comes in several forms: level term, decreasing term, increasing term or whole-of-life cover¹⁰, and the amount paid out under decreasing term cover falls over the life of the policy, usually to match a shrinking debt such as a repayment mortgage¹¹. The genetics agreement applies across these forms, because what it regulates is the use of predictive genetic test results in underwriting, not the shape of the policy.

Critical illness cover pays a lump sum on diagnosis of a specified serious illness, and can be added to a life insurance policy or bought separately¹². All critical illness policies include cancer, heart attack and stroke among the conditions covered¹³. Income protection pays a replacement income if illness or injury stops you working, and is one of the key types of protection insurance alongside life cover and critical illness cover⁷.

For all three types, the same rule holds: within the financial limits, the insurer cannot ask for predictive genetic test results. A positive result for an inherited condition, taken while you have no symptoms, does not have to be shared with a life, critical illness or income protection insurer when you apply.

Where these rules stop: travel and private medical insurance

The protection does not extend to every kind of insurance. Travel insurance, private medical insurance and long-term care cover sit outside the genetics agreement, and the ordinary disclosure rules apply to them in full.

Travel insurance works on a different basis from protection cover. You must tell an insurance company of any conditions you have before buying a policy, and once you buy travel insurance you must tell the insurer if there are any changes in your health or condition¹⁴. Diagnosed medical conditions of any kind need to be disclosed to your travel insurer, including conditions relating to your mental health, both when you get your quote and during the policy period if your health status changes¹⁵. If your insurer is not informed, a claim could be rejected even if the issue seems unrelated, and that includes new medical conditions, changes to medication, amended travel dates, different accommodation or extra travellers¹⁶.

Private medical insurance is similar. Treatment for some illnesses, including pre-existing conditions, will likely not be covered by an individual private medical insurance policy¹⁷, and most long-term chronic conditions that require ongoing treatment, such as diabetes or asthma, are generally not covered as standard¹⁷. Because these policies ask about, and price around, your current and expected health in a way protection insurance does not, the genetics agreement's shield does not apply to them.

The practical difference is this: a predictive genetic test result you could keep private on a life insurance application may still need to be disclosed, or at least considered carefully, when answering health questions for travel or private medical cover. The questions on each application form set the scope, and you only have to answer what is asked², but for these policies the questions can reach further.

Which genetic tests count as predictive

The agreement's definition matters, because not every genetic or medical test is covered. The Concordat applies to predictive genetic tests, defined as tests that examine the structure of chromosomes (cytogenetic tests) or detect abnormal patterns in the DNA of specific genes (molecular tests)¹.

The purpose of these tests is to look forward: they estimate the chance that someone who is currently well will develop an inherited condition in the future. That is what distinguishes them from diagnostic tests, which investigate symptoms you already have. A diagnostic test that leads to a diagnosis is simply part of your medical history, and it must be disclosed to an insurer that asks about diagnosed conditions, in the ordinary way².

The distinction also explains the rule on carriers. Being a carrier of a genetic condition but showing no symptoms does not need to be disclosed to the insurance company, though all relevant medical history must be². A carrier result is predictive information about a possible future, not a present diagnosis, so it falls on the protected side of the line.

If you are unsure which side of the line your own test falls on, the treating clinician or a medical geneticist can explain what the test was for. There is nothing to stop you sending information from your medical geneticist to the insurance company, which may be helpful for rare diseases the insurer is not familiar with².

The £500,000 limit on disclosure

The financial limits are the heart of the agreement. The Concordat and Moratorium states that customers will not be required to disclose the results of predictive genetic tests for policies up to £500,000 of life insurance¹. Genetic Alliance UK's guidance confirms the same figure: predictive genetic test results must be disclosed only in the case of Huntington's disease for life insurance policies over £500,000².

The documents also contain a lower figure of £300,000 for other types of cover, and the two documents do not fully reconcile on this point. What is clear and consistent across both is the £500,000 life insurance limit and the single Huntington's disease exception above it. If you are applying for critical illness or income protection cover at a high sum assured, it is worth asking the insurer directly what it will ask for, because the agreement's protection is framed around the life insurance limit.

For most people the limit is generous. Life insurance sums are often set to cover a mortgage or to provide for a family, and £500,000 of cover is more than many households buy. But for large estates, big interest-only mortgages or business-related cover, the limit can be crossed, and the Huntington's disease exception then bites. The guide to how much life insurance you need may help in thinking about the sum assured before you apply.

Do you have to tell an insurer about a genetic test result?

The short answer is that you only have to answer what is asked for by the insurance company, or requested on the application form². If the application form, compliant with the agreement, does not ask for predictive genetic test results, you do not volunteer them.

The rules work like this:

• A positive predictive result with no symptoms does not need to be disclosed, with the exception of a predictive genetic test for Huntington's disease for life insurance cover over £500,000².
• A diagnosis you actually have must be disclosed if the form asks about it. You must be honest about the diagnosis and the likely progression of the condition, or the policy may become void².
• Being a carrier with no symptoms does not need to be disclosed, though all relevant medical history must be².
• Family history must be answered if the form asks about it, and insurers do ask: family health history is one of the factors that shapes the premium³.

The consequences of getting this wrong run one way only. Answering all questions truthfully prevents any chance of the policy becoming void². If a family later needs to claim and the insurer finds an undeclared diagnosis, the policy may be declared void and any payout refused¹¹. The guide to answering an insurer's questions honestly covers non-disclosure and claims in detail.

It is worth remembering that disclosure is about the questions asked, not about volunteering everything you know. The agreement exists precisely so that predictive genetic information stays yours unless the insurer is entitled to ask for it.

Tests taken after your cover starts

Once a policy is in force, the position changes in your favour. Unless your insurance company specifically requests that you advise them about treatment after you have taken insurance, there is no need to tell the insurer, but treatment must be disclosed on any new policy².

The same principle appears across protection insurance generally. If you already have life insurance and are subsequently diagnosed with diabetes, you do not have to tell your insurer or pay higher premiums⁵. Likewise, if you already have an existing policy, there is often no need to tell your life insurer if you develop cancer: once a policy is in place, the premiums cannot be increased¹¹. A genetic test taken after cover starts, predictive or otherwise, does not reopen the application.

This is one of the strongest reasons people give for buying protection insurance before rather than after taking a genetic test. Cover bought while you are well is underwritten on the health information known at the time, and later information, including predictive test results, does not usually affect it.

The contrast with travel insurance is stark and worth noting. Once travel insurance is bought, the insurer must be told of any changes in health or condition¹⁴, and providers ask for disclosure both when the quote is obtained and during the policy period if health status changes¹⁵. A genetic test result that is irrelevant to an in-force life policy may still be relevant to a travel insurer, because those policies are priced and underwritten continuously rather than once at the outset.

How insurers handle genetic and medical information

Underwriting is the process by which an insurer decides whether to offer cover and at what price. Insurers use risk data to calculate the likelihood of the event you are insuring against happening, and the more likely the event, the higher the cost of the premium⁴. Your age, health, lifestyle, coverage amount, policy type, family health history, term length, job and any extras all feed into the price³.

The insurer does not simply take your word for your health. You make an honest declaration, and your GP will be asked to confirm your medical conditions¹⁸. Insurers will also check your answers with your GP⁶. Health questions typically reach back over a set period, asking whether other illnesses have been diagnosed within the past five years and whether you have received any medical treatment in the past 12 months⁶. In unusual circumstances, further medical examinations may be needed before a premium can be quoted¹⁸.

Within that process, the genetics agreement constrains what the insurer may ask for. It cannot demand a predictive genetic test, and within the limits it cannot demand the result of one. It can still ask about your family history, your diagnosed conditions and your treatment, and it can verify those answers through your GP.

If you have a rare condition the insurer may not be familiar with, you can send information from your medical geneticist to the company, which may help it assess the risk properly². Insurers can also refuse cover in some circumstances: they are legally entitled to refuse cover where the medical prognosis is that you will die during the policy term, for example where someone is already diagnosed with a terminal illness⁵. There are also specialist, non-medically screened policies that offer guaranteed cover for anyone, though these are often more expensive, with limits on term length or the total sum insured⁵. The guide to cover with a pre-existing medical condition covers these routes.

A voluntary agreement, not a law

The genetics rules are not statute. The Concordat and Moratorium on Genetics and Insurance is an agreement between the Government and the insurance industry, made through the Association of British Insurers, and insurers follow it as a commitment rather than under a legal duty¹. That has practical consequences: it is enforced through the industry's own arrangements and, ultimately, through complaint routes such as the Financial Ombudsman Service, rather than through a regulator's rulebook.

The agreement has a history worth knowing, because it shows how the protection has developed:

The Moratorium on insurers' use of predictive genetic test results came into effect on 1 November 2001¹. The Concordat between the Government and the ABI came into effect on 14 March 2005¹. The Genetics and Insurance Committee, which had overseen the area, was disbanded in 2009 and its annual reports archived¹. A review in 2011 confirmed the Moratorium would run until 1 November 2017, with a further review in 2014¹.

Because the arrangement is reviewed periodically rather than fixed in law, its terms can change. Before relying on the limits, especially for a large policy, it is sensible to check the current position with the insurer or through the ABI, and to ask the insurer to confirm in writing what genetic information it will and will not ask for.

Complaints and the Financial Ombudsman Service

If you believe an insurer has asked for a genetic test result it is not entitled to, or has used genetic information unfairly, the first step is to complain to the insurer directly using its complaints process. Insurers must handle complaints and tell you the outcome.

If the insurer does not resolve the matter, the Financial Ombudsman Service can help. It receives complaints from consumers about a range of insurance products¹⁹, and it can look at complaints involving insurance sold in the UK. Its investigations draw on relevant law and regulations, the regulator's rules, guidance and standards, industry codes of practice and good industry practice²⁰, which is significant here: the genetics agreement is exactly the kind of industry code the ombudsman takes into account when deciding whether an insurer treated a customer fairly.

In insurance complaints the ombudsman looks at the policy's terms and conditions, exclusions for pre-existing medical conditions, misrepresentation and non-disclosure, and any change in health²¹. Its powers are real. It can ask an insurer to reconsider, or pay, some or all of a claim, or refund premiums, and it can ask the insurer to pay interest, or compensation for distress or inconvenience²². Where a customer would have bought a different policy that would have covered their claim, the ombudsman can ask the insurer to pay the claim²⁰. It can also ask an insurer to refund the premium plus interest, less any tax due, or to treat the customer as if cover had been in place with another insurer²¹.

The service is free to use. Its easy-read guidance confirms it can help with complaints about insurance for your home, car or travel to another country, as well as bank accounts, bank cards and problems with loans²³. For a genetics-related complaint, the strongest position is to have the insurer's questions and your answers in writing, so the ombudsman can see exactly what was asked and disclosed.