To ask the Secretary of State for Health and Social Care, whether his Department made an assessment of the potential merits of including references to conditions other than Huntington’s disease in the code on genetic testing and insurance.
To ask the Secretary of State for Health and Social Care, whether his Department has conducted research on the guidance provided to insurance companies by the governments of other European countries on requesting information about the genetic history of life insurance applicants.
To ask the Secretary of State for Health and Social Care, whether he has had recent discussions with providers of life insurance on the level of premiums offered to applicants who have tested negative for Huntington's disease.
The Code on Genetic Testing and Insurance is a shared agreement between the Government and the Association of British Insurers (ABI) on the use of genetic testing in underwriting insurance policies. Compliance with the Code, and the adoption of the Commitments in the Code, is a condition of membership for all ABI members.
The Government and the ABI launched a Call for Evidence on the Code on 25 July 2023 and closed on 17 October 2023. The Call for Evidence gathered views around how to transparently assess which predictive genetic test results may need to be disclosed under the Code in the future, as well as whether approaches used in other countries should be considered.
The ABI has recently published a revised Consumer Guide to the Code, which directly addresses concerns about the level of premiums offered to applicants who have tested negative for Huntington's disease. The consumer guide is available at the following link:
While no specific conversations have taken place with life insurance providers, the Government continues to work closely with the ABI to ensure the Code remains fit for purpose and beneficial to both consumers and the insurance industry.