The Generative Brain

UK Code on Genetic Testing and Insurance

The Code is a voluntary, open-ended agreement between the UK government and the Association of British Insurers (ABI), published in October 2018, which replaced the earlier Concordat and Moratorium on Genetics and Insurance. Its text says its content is not legally binding, though compliance is a condition of ABI membership. Insurers will not require or pressure anyone to take a genetic test, and will ask for or use a predictive result only for a condition listed in Appendix I and only above set financial limits. The one listed condition is Huntington disease, for life cover above 500,000 pounds. The Code does not limit diagnostic results or family medical history in the same way. Prion disease is not listed; the only official page found that names it is a consultation record of respondents worrying it could be added. Description of the text only; not legal or insurance advice.

Key facts

  • Status: the Code calls itself a voluntary agreement whose content is not legally binding; adopting it is a condition of ABI membership, and non-member insurers may opt in by notifying the ABI in writing.
  • Two core principles: no requirement or pressure to take a predictive or diagnostic test, and a predictive result may be considered only if the Code names that test and the sum assured exceeds the limit.
  • Definitions: a diagnostic test confirms or rules out a diagnosis based on existing symptoms, signs or abnormal non-genetic results; a predictive test predicts future risk in people without symptoms of a genetic disorder.
  • Limits per person: life 500,000 pounds, critical illness 300,000 pounds, income protection 30,000 pounds a year; other types such as travel, motor and private medical are outside any predictive use.
  • Appendix I lists only Huntington disease for life cover above 500,000 pounds, so no condition is listed for critical illness or income protection.
  • Insurers will not ask for a predictive result taken after cover has started, for the duration of that cover, a result of another person such as a blood relative, or a result obtained exclusively in scientific research.
  • The research exemption does not extend to a relative outside the project who is referred for cascade testing; that relative's result may need disclosing under Commitment 2.
  • Exclusions from protection: insurers may seek appropriate family medical history and GP reports with consent, may use diagnostic genetic results, and applicants must take reasonable care not to misrepresent information.
  • A predictive result given accidentally or voluntarily may be used if it benefits the applicant, for example by ruling out a risk suggested by family history; an unfavourable one is ignored unless Commitment 2 applies.
  • The Code covers predictive tests regardless of why they were obtained: direct to consumer, clinician recommended or research, and whether single gene, panel or whole genome.
  • Adding a condition needs an ABI application showing clear inheritance with high probability of disease, a test of high analytical validity, clinical validity and clinical utility, and material anti-selection risk, followed by peer review by at least four independent experts and a government decision within 6 to 12 months of publication.
  • Since March 2026 that peer review must include relevant research and ethical considerations.
  • Complaints: an insurer answers a request about how a predictive result was used within 10 working days, and a complaint within a further 10 working days; routes then include the Financial Ombudsman Service and legal action.
  • 2024 data: 8,281 tests reported to insurers (2,700 predictive, 5,013 diagnostic, 568 other or unknown) and 5 complaints about use of results, all resolved between company and customer.
  • The government has received no application to add a condition in over 20 years, and the 2025 review reports anecdotal delay of predictive testing because of insurance concerns.
  • In the 2023 call for evidence, 61 percent of 57 respondents had concerns about testing and access to affordable private insurance.
  • The call for evidence outcome records concern that people at risk of diseases with penetrance and progression similar to Huntington disease, naming familial prion disease, may worry about those conditions being added to the list. This is a respondent view, not a government finding.

Timeline

  1. 2001Moratorium on insurers' use of predictive genetic tests begins (search excerpt).
  2. 2005Extension to 1 November 2011 announced by written statement (search excerpt).
  3. 2011Extension to 2017 reported (search excerpt).
  4. 2018Code published, open-ended, replacing the Concordat and Moratorium.
  5. 2022First 3-year review published, delayed by COVID-19.
  6. 2023Call for evidence opens, closing 2023-10-17.
  7. 2024Call for evidence outcome published, naming familial prion disease in respondent concerns.
  8. 2025Annual report 2024 government summary published.
  9. 2026Second 3-year review published.
  10. 2026Code updated on the Appendix I process.
  11. 2028Next review planned.
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