Overview

Genetic conditions and insurance

Sometimes it is necessary to provide medical information to insurance companies. This includes genetic information. Insurers need this information to set up your policy and work out your premiums.

If you are applying for a type of protection insurance, such as life insurance, critical illness or income protection, then it is likely that you will need to provide genetic information. 

You do not need to provide genetic information when applying for travel, home or motor insurance. 

Code on Genetic Testing and Insurance: consumer guide

The UK Government and the Association of British Insurers (ABI) have created a guide to explain what you do and do not need to tell your insurance company about genetic tests you have had. 

Insurance companies will not ask you or pressure you to have diagnostic genetic or predictive tests. 

What you need to disclose

If it is requested on your application form then you must give the relevant information about current or previous illnesses in yourself and your family members. 

You only have to answer what is asked for by the insurance company or requested on the application form.

Answering all questions honestly will prevent your policy from becoming void. 

Ask your clinical geneticist or genetic counsellor if you are not sure which type of test you have had, or are considering. 

Diagnostic genetic test

A diagnostic genetic test is the same as any other diagnostic medical test, such as a blood test. 

It means that you might need to tell the insurance company about the results of a diagnostic genetic test when you apply for insurance or fill in an application form. It also might be on your medical report if the insurance company asks to see it.  

Predictive test

The insurance company will not ask for, or take into account, the result of a predictive genetic test if you are applying for insurance. 

However there is an exception. If they ask, you do need to tell the insurance company the results if you are applying for life insurance over £500,000 and you have had a predictive genetic test for Huntington’s disease

If you have a predictive genetic test that shows that you haven’t inherited a condition that runs in your family, you can choose to tell the insurance company as this might help your application. Check with your insurance company to find out what their policy is.

You do not need to tell the insurance company that you had a predictive genetic test if:

  • it was conducted as part of scientific research 
  • your relative or your spouse has had a predictive genetic test  
  • you have already taken out insurance

Carrier test

If you are a carrier of a genetic condition but are not showing any symptoms, you do not need to disclose this to the insurance company. 

You must disclose all relevant medical and family history that you are asked about.

How insurance companies interpret your results

Insurance companies employ medical experts who are trained to interpret medical information and test results. 

If you think that your results have been interpreted incorrectly, you can ask for a reassessment. You also have the right to appeal and have any complaint heard fairly.

Taking part in a genetics research project

Taking part in research does not affect insurance. You will not be asked to disclose any predictive or diagnostic genetic test results that are requested as part of a genetics research project.

You can discuss this with your research practitioner, doctor, nurse or genetic counsellor before taking part in a research study.

It’s important to remember that any policy you have already taken out is not affected.

Many people who take part in research projects are not told their test results. Even if you do know the results, insurers will only consider results of tests done as part of a clinical diagnostic or predictive process and approved by the Government's Genetics and Insurance Committee. It is unlikely that the committee would approve using research tests.

Further information

GOV.UK for the Code on Genetic Testing and Insurance and Consumers Guide 

Association of British Insurers (ABI) for frequently asked questions about genetic testing 

Insurance and Genetic Conditions for information and support

Resource number 2115/VER3
Published date January 2023
Review date January 2026

Contact us

If you have any questions or concerns, please contact your genetics clinician on: 020 7188 1364 (Monday to Friday, 9am to 5pm).

Cancer Genetics Service
Guy’s Regional Genetics Service
Guy’s Hospital
Great Maze Pond
London SE1 9RT

Do you have any comments or concerns about your care?

Contact our Patient Advice and Liaison Service (PALS)

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