Insurance

We are often asked if taking part in the 100,000 Genomes Project can affect insurance premiums. This is because, in some cases, genomic or genetic testing can discover a predisposition to disease.

Most of the time taking part in research projects, including the 100,000 Genomes Project, won’t affect insurance premiums. You don’t normally have to tell insurers that you are taking part in research, or about genetic test results. However, when applying for insurance you do have to disclose any symptoms you experience or any diagnoses, screening, or treatments you receive, if this information is requested on the application form.

It is important that you answer all questions truthfully when applying for insurance. If you deliberately, recklessly or carelessly give incorrect or incomplete information when answering questions, there is a risk that the insurer will decline any future claim.

If you already have insurance cover in place, you do not have to disclose any further information to your insurer. This includes your participation in the project, genetic tests results, any screening, treatment, or diagnosis that you receive during or after the project, or indeed any change in your health after the policy came into effect. This is because all relevant facts are only obtained by insurers at the time the application is made. The insurance policy is based upon the facts known at that time. Once granted, cover remains in place on the same terms and conditions until the policy ends (provided premiums are paid).

Person Filling Application For Life Insurance

On this page when we talk about ‘insurance’ we mean these types, unless otherwise stated:

  • Life insurance
  • Critical illness insurance
  • Income protection insurance.

The questions and answers on this page have been developed with the Department of Health (opens in new window) and the Association of British Insurers.

More information

Further information and resources are available from Genetic Alliance UK (opens in new window) and the Association of British Insurers (opens in new window).

Applying for new insurance policies

General questions about the Project

No. Insurers will not ask about, and you do not have to disclose, your participation in the 100,000 Genomes Project.

No. you will not be asked by insurers to disclose any genetic test result acquired as part of the 100,000 Genomes Project. This includes both genetic test results that relate to the condition that led you to join the project (main finding), as well as any genetic test results that suggests that you have a genetic predisposition to a disease or an increased chance of developing a condition in the future (additional finding).

Even if you do (unintentionally) disclose this information to an insurer, the genetic test result would be disregarded by insurance companies and your application would be assessed as if this had not been disclosed. The insurer will not use it to refuse you insurance, charge you a higher premium, or impose conditions on your insurance.

Yes, you can disclose a ‘favourable’ predictive test result to your insurance company. Individual insurance companies are required to publish information and make it very clear about the way they will use such test results to inform their underwriting decisions. The vast majority of insurers will take into account the results of such a voluntarily disclosed genetic test result, provided it is from a reputable source. This often allows them to make a more accurate decision with a better outcome for the applicant.

Disclosure of information about symptoms and diagnosis

Yes, if this information is requested on the application form. The application form will typically ask you for information relating to any physical symptoms you have experienced or diagnoses you have received. These questions must be answered honestly and accurately, even if these relate to a condition that is discovered through the 100,000 Genomes Project. You do not need to disclose the genetic test result itself.

No. You only need to answer the questions in the application form. If the form asks you if you have suffered from a specific medical condition, then you need to disclose this regardless of whether there is any genetic component or not. However, you do not need to disclose the genetic test result even though this may be associated with your diagnosis.

For example, if you had previously been diagnosed with breast cancer, and through the project you discover you have a mutation in the BRCA1/2 genes, you do not need to mention the genetic test result when disclosing your previous diagnosis.

Even if you do (unintentionally) disclose this information to an insurer, the genetic test result would be disregarded by insurance companies and your application would be assessed as if this had not been disclosed. The insurer will not use it to refuse you insurance, charge you a higher premium, or impose conditions on your insurance.

General information about disclosure to insurers

No. However, you must answer make sure you answer all questions on the application form honestly and accurately. Regarding the health details of relatives, you only need to disclose what has been requested and that you know about. If you are unsure about your family history of a specific condition, you do not need to seek out this information.

Your insurer will not ask your GP about your participation in research projects such as the 100,000 Genomes Project.

Insurance companies can only obtain information about you from your GP with your consent. However, the majority of life, critical illness and income protection insurance is based upon the information obtained on the application form and without any referral to GPs.

The British Medical Association and the Association of British Insurers have agreed on a set of questions that insurers can ask GPs when assessing your application for insurance. In applications for life insurance, the insurer is only interested in the diagnosis, treatment, severity and prognosis of a condition that could reduce your life expectancy. For critical illness insurance, the insurer is generally only interested in information about any of the conditions covered, and other health factors that affect the likelihood of you developing the conditions covered. For income protection insurance, the insurer is concerned with medical conditions that cause absence from work.

Your doctor will be told not include any predictive genetic test results in their report to the insurer.

If you discover you have a genetic predisposition that leads to additional screening or treatments

The following questions are relevant if, through participation in the project, you’ve been found to have a genetic predisposition to a condition and are having additional screening and/or preventative treatment. The vast majority of participants will not have any additional findings and this will not be relevant.

Yes, if this information is requested on the application form. The application form will typically ask you for information relating to any screening or preventative treatments (including risk reduction surgery) you have received. These questions must be answered honestly and accurately, even if these relate to a condition or predisposition that is discovered through the 100,000 Genomes Project.

It is unlikely that disclosures about additional screening or preventative treatments alone will result in increased premiums or refusal of cover. However, it may alert the insurer to closely examine your personal medical and family history in order to be able to fully assess your application. Some insurers may also ask additional questions beyond those on the application form to gain as much detail as possible.

Any additional screening or preventative treatment that you undergo which is known to reduce the risk of a particular condition will be taken into account by the insurer in assessing your application and setting your premiums, which could result in a better outcome for you.
The insurer is obliged to justify any increased premiums or refusal of cover by demonstrating that there is an increased risk of you making a claim from based on the facts collected at application.

Insurance companies must provide you, if asked, with written reasons for:
o any extra premiums they charge;
o reducing the insurance cover that is provided;
o refusing an insurance application;
o rejecting a claim; or
o cancelling a policy.

You should remember that if you have a rare disease, have had a diagnosis of cancer or have a family history of a particular condition, all of these factors may already affect any insurance applications you make. In this context, any additional screening or testing you receive because of a genetic finding may not have any (further) negative impact and could even be used by insurers to reduce any surcharge you would otherwise pay.

There are specialised insurance brokers who can help to identify different insurance companies or products for those with complex health conditions. Details of these can be found from patient groups and through the British Insurance Brokers’ Association (opens in new window).

Critical illness pays a benefit on the occurrence of a specific medical condition (including cancer, stroke and heart attack), rather than on death or disability. Because of this, an applicant for critical illness insurance who has (or is at risk of) a serious medical condition is more likely to face premium increases, exclusions being applied or cover being refused, than an applicant for life insurance.

No, your family members will not be asked or required to disclose this information on any applications for insurance. Insurers will usually ask about the medical history of your first degree family members (your parents and siblings). However, this will usually be limited to whether any of these family members have had a particular condition or diagnosis.
In no case will an insurance company ask an applicant to disclose the genetic test results of a family member.

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