Genetic testing and insurance

23rd August 2023

The Association of British Insurers (ABI) have recently updated their consumer guide on the code for genetic testing and insurance.

The Code on Genetic Testing and Insurance has been developed between the Government and the Association of British Insurers (ABI) on behalf of its members and describes a shared agreement on the role of genetic testing in insurance.

This Code and the Commitments explains what insurance companies can and can’t do relating to genetic testing when people apply for insurance and refers to two different kinds of genetic tests:

  • Diagnostic genetic tests confirm or rule out a diagnosis based on existing symptoms, signs or abnormal non-genetic test results which indicate that the condition in question may be present.
  • Predictive genetic tests predict a future risk of disease in individuals without symptoms of a genetic disorder.

What does this mean for you?

If you are applying for insurance from a company who has signed up to the Code, they agree to act according to its rules. This means that the company has committed to the following:

  • To not require or pressure you to have a predictive or diagnostic genetic test, under any circumstances
  • To not ask for, or take into account the result of a predictive genetic test if you are applying for insurance with the only exception being if you are applying for life insurance over £500,000 and you have had a predictive genetic test for Huntington’s Disease. Only in this circumstance do you need to tell the insurance company the result of the test, if they ask

The Code recognises that a diagnostic genetic test is the same as any other diagnostic medical test (such as a blood test). This means you might need to tell the insurance company about the results of a diagnostic genetic test when you apply for insurance. You might be asked for this information as part of the application form, or it may be included in your medical report if the insurance company asks to see it as part of your application, and the GP thinks the test is relevant.

How the code can help you

  • If you have had a predictive genetic test as part of scientific research, if your relative or your spouse has had a predictive genetic test, or if you have a predictive genetic test after you have taken out insurance, you do not need to tell the insurance company.
  • If you have a predictive genetic test that is in your favour, you can choose to tell the insurance company as this might help your application. An example is if you have had a test which shows that you haven’t inherited a condition that runs in your family. You should visit the company’s website, or contact them directly, to find out what their policy is.
  • You can ask an insurance company about how the result of a predictive genetic test result has contributed to a decision made about your application. If you don’t think the company has acted according to the Code, the Code also explains how you can make a complaint.

The Code has no expiry date. It is possible that in future there may be different predictive genetic tests that you may have to tell an insurance company about, because our understanding of genetic testing may change. However, under the Code you will not have to tell insurers about the results of a predictive genetic test unless you are buying the very largest amounts of insurance compared to the general market (e.g life insurance above £500,000).

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Produced by Jonathan Gibson using information from the Code on Genetic Testing and Insurance

Hi, I’m Jonathan and I work as the Policy and Public Affairs Officer for Metabolic Support UK.

My background is in genetics and global health and I’ve also worked for the NHS within a busy biomedical science laboratory for over four years undertaking the analysis of samples to ensure you receive the right treatment and diagnosis.

I act as an activist and key partner with our communities to elicit change, utilising policy, data and research to develop creative campaigns with measurable goals to ensure action is taken to improve the lives of people living with inherited metabolic disorders.

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