Insurance, privacy and the Code on Genetic Testing and Insurance

Last Reviewed 23/10/2018

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 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 Code of Practice

The Code of Practice preserves the principle 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.

The Code allows patients who have taken a predictive genetic test to obtain significant levels of insurance cover without disclosing the results of that predictive genetic test. This is with the exception of a predictive genetic test for Huntington’s disease for life insurance over £500,000.


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.

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