Insurance, work and genetic information: more detail

What exactly does the UK code commit insurers to?

The Code on Genetic Testing and Insurance, agreed between the UK government and the Association of British Insurers, is open-ended with no expiry date, and compliance is a condition of membership for all ABI members. Non-member insurers may otherwise agree to adhere to it. The government’s three-year review, presented as the 2025 review and published on 5 March 2026, is the current source, and the next review is due in 2028.

The commitments are specific. Insurers will never require or pressure any applicant to undertake a predictive or diagnostic genetic test. They will consider the result of a predictive genetic test in only a very small minority of cases. Results from tests undertaken exclusively through participation in research studies do not need to be disclosed. Where a predictive result should not have been disclosed, insurers do not request it and will ignore it.

The single exception is a predictive test for Huntington’s disease in applications for life insurance where cover exceeds 500,000 pounds. The review notes that no insurer has submitted an application to add a condition in over 20 years. Predictive PRNP results are therefore not within the exception at any level of cover.

The financial limits are 500,000 pounds for life insurance, 300,000 pounds for critical illness and 30,000 pounds a year for income protection. The review gives 2024 figures for how much of the market sits below them: 93 percent of new life policies, 99 percent of critical illness policies and 84 percent of income protection policies.

Two asymmetries deserve explicit attention in counselling. Diagnostic results are treated differently: under the code, insurers can ask for and use diagnostic test results reported to them. And a predictive result can be used where a voluntarily provided result mitigates an adverse family history, which usually produces a lower premium, so the code permits disclosure that works in the applicant’s favour.

The 2025 review did not amend the code’s text. It committed to four actions before 2028, including convening a subgroup to review the definitions of diagnostic and predictive tests, amending the code to state that research and ethical considerations form part of reviewing applications to add conditions, updating the ABI consumer guide, and gathering evidence on whether insurance concerns deter people from testing or from research participation. That last item is the one most relevant to prion disease, where recruitment of asymptomatic carriers to research is important.

What does GINA cover, and what does it leave out?

The Genetic Information Nondiscrimination Act of 2008, Public Law 110-223, has two operative titles. Under Title I, health insurers may not use genetic information to determine eligibility, underwriting or premiums, and may not require genetic testing or genetic information from enrollees or their family members; the regulations took effect on 7 December 2009. Under Title II, enforced by the EEOC, employers may not use genetic information in hiring, firing, promotion, pay or job assignment, and may not request or require genetic information or testing as a condition of employment; those regulations took effect on 10 January 2011.

The exclusions are substantial. GINA does not apply to employers with fewer than 15 employees. The military may use genetic information in employment decisions, and because TRICARE eligibility follows military employment, results may affect access to it, with only limited Title I protection. The health insurance protections do not extend to long-term care, life or disability insurance.

State law forms a patchwork above that floor. GINA does not pre-empt stricter state protections; Wisconsin legislated first in 1991, and California’s CalGINA in 2011 extended protections into areas including housing, mortgage lending and education. For a specific client the operative question is which state they live in and which line of cover is involved.

What is the professional position?

The National Society of Genetic Counselors maintains a position statement, originally adopted in 1991 as “Nondiscrimination” and reaffirmed in September 2024, stating that no individual should be discriminated against on the basis of genetic information. It supports GINA and HIPAA and notes explicitly that those laws do not protect against discrimination by life, long-term care and disability insurers.

On those lines of cover the statement takes a qualified position: it accepts that life, long-term care and disability insurers may use genetic information in underwriting, while calling for transparency in that process and for such use to rest on solid actuarial evidence of disease risk. That last clause is worth noting in prion disease, where variant-specific penetrance estimates range from near-complete to around 0.1 percent lifetime risk, and where actuarial evidence for the low-penetrance variants is thin. PRNP variants sets out those estimates.

How should this be handled in the pre-test process?

As a scheduled item, not an afterthought. The 2026 Israeli practice framework for relatives of people with CJD places the process in four steps, with at least a month between counselling and blood sampling, and recommends public funding of counselling and testing to ensure equitable access. That interval is the natural place for an applicant to resolve cover questions before a result exists.

The practical checklist that follows from the sources above: establish which jurisdiction’s rules apply; identify the line of cover at issue, since health insurance, life, critical illness, income protection, disability and long-term care are governed differently; check existing cover, which is generally unaffected by a later result but depends on the policy terms; clarify whether a result would arise through clinical testing or exclusively through research participation, which the UK code treats differently; and document that the discussion took place.

What counsellors should not do is predict an underwriting outcome. A question about a specific policy belongs with the insurer or an independent financial adviser, and a workplace question belongs with an employment adviser, a union or the relevant enforcement body.