What information you do, or do not, need to share with an insurance company is regulated by a voluntary Code on Genetic Testing and Insurance between the government and insurance companies. Below we explain what this means for patients with genetic conditions when seeking to take out insurance.

Code of Practice

The UK government and the insurance industry have worked together after recognising the concerns around the potential use of genetic data by insurance companies. The Code of Practice protects the interest of both customer and insurer, by preserving customer access to insurance and insurance companies’ right of equal access to information about risk.

The Association of British Insurers (ABI) have produced a Consumer Guide to help explain the code.

The Code of Practice

The Code of Practice says that unless otherwise agreed, insurance companies should have access to all relevant information to enable them to price risk fairly in the interest of all their customers.

Insurance companies that have signed up to The Code have committed to:

–     Not under any circumstance require or pressure you to have a predictive or diagnostic genetic test

–     Not ask you whether a predictive genetic test has been taken. 

Not ask you about the results of any predictive test. The only exceptions to this are for policies worth over £500,000 per person and for the results of a predictive test for Huntington’s disease

–      Only take into account the results of predictive testing given to them either voluntarily or accidentally if it benefits the applicant e.g. a predictive tests which shows that the applicant has a low risk of getting a specific genetic disease

You do not have to tell insurers:

  • That you have had a genetic test 
  • The results of a predictive genetic test
  • That you have had an appointment for a predictive genetic test


Will my information be shared with other insurance companies?

When insurance companies are dealing with sensitive, personal and medical information they have to protect it in line with the law (the Data Protection Act 1998) and with the Code of Practice.

Any information you provide is securely locked away, and electronic information is kept with secure access and is password protected, the information is only accessed by staff that need it to use it in order to prepare your policy.

Any genetic information you provide is confidential and your genetic and personal information is destroyed when it is no longer relevant.

There are companies called reinsurance companies. Reinsurance is insurance purchased by other insurance companies to share some of the risk your insurer takes on. Reinsurance companies are allowed to have access to the information, but it will only be used with the same protection as the insurer and will not be used in connection with the business of any other insurance company.

Find out what our Chief Executive, Jayne Spink, has to say about the Association of British Insurers (ABI) and Department for Health and Social Care’s Code on Genetic Testing and Insurance here.