Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, if he will have discussions with representatives of the insurance industry on the prices for life insurance offered to people who have a family history of Huntington's disease and also have a confirmed negative predictive test.

The Secretary of State has not had discussions with the insurance industry on prices for life insurance for people with a family history of Huntington’s with a negative predictive test and, has no plans to have such discussions. However the Department works closely with the Association of British Insurers on the Code on Genetic Testing and Insurance to ensure it remains fit for purpose. This has included discussions with the Huntington’s Disease Association during the recent three yearly review of the Code, which was published in December 2022.

While there are no plans to make a formal comparative assessment, we are aware of stakeholders raising concerns regarding access to life insurance for people with a family history of Huntington’s while having a negative predictive test and we will be working with ABI to understand this further.