The Code on Genetic Testing and Insurance is an agreement between the Government and the Association of British Insurers (ABI). It explains what an insurance company does and does not need to know about the genetic testing you may have had when you apply for insurance.
If you would like to understand the code and how to use it, read our Consumer Guide.
All our members automatically sign-up to the Code, and other insurance companies who are not members can also sign-up. You can see a full list of insurance companies who have signed up to the Code here.
What does it 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).
Background
The Code, published in October 2018, is the sixth iteration of a long-standing agreement – previously called the Concordat and Moratorium on Genetics and Insurance - launched in 2001, between the ABI and the Government on how insurers use genetic information.
The main difference between the updated Code and the previous agreement is that the Code is open-ended, where the previous version expired every three years unless it was extended. Whilst this change does not mean the agreement is permanent, it should provide reassurance to the public that the insurance industry will seek to manage the need for any future change via the Code.
Reviews of the Code
In 2022, we co-produced the first 3 year review of the Code on Genetic Testing and Insurance with the Government. It reviews changes in the genomic policy landscape over the last year and outlines actions being taken to gather expert opinion to ensure the Code remains mutually beneficial for both consumers and the insurance industry.
Annual Reports
Under the Code, the ABI and DHSC publish annual reports to provide a commentary on the state of the market and developments in genomic medicine, as well as looking at compliance with the Code.
The 2023 annual report can be found here. An annual report was also published in 2019 and 2021.