Code on Genetic Testing and Insurance: call for evidence
Download the full outcome
Detail of outcome
We received 57 responses to our call for evidence, which ran over a 12-week period from July to October 2023. This included 11 responses from individuals who wanted to share their personal views and experiences, 29 responses from individuals sharing their professional views and 17 responses from organisations.
The results suggest that while the Code on Genetic Testing and Insurance remains fit for purpose, future amendments may be needed to reflect gradual changes in the genomics landscape. We will continue to explore the need for potential future amendments through stakeholder workshops, to be held later this year.
Original call for evidence
Call for evidence description
The Code on Genetic Testing and Insurance (‘the Code’) is a voluntary agreement between the UK government and the Association of British Insurers which provides guidance on the role of genetic testing in insurance across the UK.
This call for evidence is seeking views from individuals and organisations, including those with genetic conditions, family members and carers, healthcare professionals, the insurance industry and the public, to ensure the Code remains beneficial for both consumers and the insurance industry. The responses will be used to inform whether the Code may need to be revised to ensure it remains fit for purpose.
Documents
Last updated 25 April 2024 + show all updates
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Updated with the results of the call for evidence.
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First published.