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Rethinking insurance and genomic testing: the evidence

The DHSC’s recent call for evidence received 57 responses from organisations and individuals, who voiced concerns and offered suggestions for future amendments

In July 2023, the Department of Health and Social Care (DHSC) requested evidence on the Code on Genetic Testing and Insurance (‘the Code’). The results of this mandate have now been made public.

The Code is an agreement between the UK government and the Association of British Insurers (ABI) on how genetic/genomic test results can be utilised when underwriting insurance policies. Because genetic testing, whether diagnostic or predictive, identifies genetic variants that can indicate health conditions, the Code limits insurers’ access to test results.

The 2023 call for evidence sought input on whether the definitions for genetic tests used in the Code are up to date. It also aimed to develop a framework for assessing whether a predictive genetic test must be disclosed under the Code.

Concerns raised by respondents

Fifty-seven responses were submitted from organisations, professionals and members of the public.

  • Around two-thirds of respondents felt they knew whether a genetic test would be considered predictive or diagnostic. However, many shared that definitions could be enhanced, that some tests do not truly fit either category and that more guidance would reduce ambiguity. Respondents also proposed that the Code’s definitions incorporate examples of genetic tests.
  • Nearly three-quarters of professionals and organisations have found genetic tests difficult to categorise as either predictive or diagnostic. They felt that some tests could function as predictive and/or diagnostic depending on context and any pre-existing health conditions.
  • Around three-quarters of respondents are concerned about genetic testing and accessing private insurance. From avoiding genetic tests altogether due to cost and accessibility of private insurance, to the effect that positive predictive test results can have on family members, respondents still have worries – including the increase of exempt conditions in the Code.

Mixed feedback on the framework’s adequacy as an addition to the Code

Overall, respondents felt that any consultations or decisions must be transparent and should incorporate thorough input from various experts. Some respondents suggested eliminating the question, ‘How many people take the test?’ because they felt this was irrelevant to whether a genetic test should be on the exemption list.

More than half (53%) of respondents felt that adding the framework would augment the decision-making process, and that more structure and transparency to any exemption list changes could reduce potential harm to individuals. However, 63% of respondents shared concerns about unintended consequences of the framework, from avoidance of genetic tests to insufficient private insurance options. Several mentioned that consequences could be be inequitable, with greater chances of discrimination for individuals with specific conditions. They also noted that NHS costs could rise to treat advanced conditions that are not detected early through predictive tests.

Suggestions on how to use evidence for Code improvement

Respondents gave several ideas on how to enhance the Code based on the new evidence, such as observing how other countries disclose predictive genetic test results to insurers. Some respondents called for an end to the Code’s exemption list altogether – including Huntington’s disease. Many felt that sharing negative predictive results might decrease insurance premiums and even incentivise testing.

The gathered evidence will inform the suitability of the Code upon the next review, which takes place every three years. The government and ABI also publish annual reports with commentary on the state of the insurance market, developments in genomic technologies and Code compliance details. You can read more about the methodology and outcomes of the call for evidence here.