People often raise this late, after they have decided about a test, and it is easier to deal with beforehand. Nothing on this page is advice about your own cover or your own job, and it cannot tell you what a particular insurer or employer will do. It sets out what the published rules say so that you know what to ask.

What is a predictive test, and why does the distinction matter?

A predictive test looks for a gene change in someone who has no symptoms. A diagnostic test is done to explain symptoms someone already has. The rules treat these differently, and the difference does most of the work in this area.

What are the rules in the UK?

Insurers who are members of the Association of British Insurers follow the Code on Genetic Testing and Insurance, agreed with the government. Compliance is a condition of ABI membership, and the code has no expiry date. The government reviewed it in 2025 and published the review in March 2026, with the next review due in 2028.

Under the code, insurers will never require or pressure anyone to take a predictive or diagnostic genetic test, and they consider the result of a predictive test in only a very small minority of cases. There is one exception: a predictive test for Huntington’s disease, on applications for life cover above 500,000 pounds. No insurer has applied to add another condition to that list in over 20 years, so predictive PRNP results are not on it.

The financial limits in the code are 500,000 pounds for life insurance, 300,000 pounds for critical illness cover and 30,000 pounds a year for income protection. In 2024, 93 in every 100 new life policies were below the life limit.

Two further points are important for prion disease families. Results of tests done only through taking part in research do not have to be disclosed. And diagnostic test results, meaning results from testing someone who has symptoms, can be asked for and used.

What are the rules in the United States?

A federal law from 2008, the Genetic Information Nondiscrimination Act, usually called GINA, covers two areas. Health insurers may not use genetic information to decide eligibility, underwriting or premiums, and may not require genetic testing or genetic information. Employers may not use genetic information in hiring, firing, promotion, pay or job assignment, or require a genetic test as a condition of employment.

GINA has gaps that are important to know about. It does not apply to employers with fewer than 15 employees, the military may use genetic information in employment decisions, and the health insurance protections do not cover life, disability or long-term care insurance. Some states have added their own protections, which vary, and GINA does not override stricter state laws.

What about other countries?

They differ, and they change. Some have legislation, some have voluntary industry agreements and some have neither. Insurance rules by country is where this site keeps what it has checked, with dates.

Does this come up in counselling?

Yes, and it should. The 2026 Israeli practice framework for testing relatives of people with CJD includes insurance among the practical matters discussed before testing, and recommends that counselling and testing be publicly funded so that access does not depend on cost.

Counsellors are used to this question and will not treat it as a strange reason to pause. It is one of the common reasons people take time over the decision, and taking time is allowed. Genetic counselling comes first explains the process, and nobody should feel pushed in either direction.

What should I actually do?

Ask the questions before any test, not after. The useful ones are what the rules are in your own country, whether the type of cover you hold or want is covered by them, whether a result from a research study would need to be disclosed, and whether you already hold cover that would be unaffected.

Your genetic counsellor can tell you how this is usually handled locally. A question about a specific policy belongs with the insurer or with an independent financial adviser, and a question about your rights at work belongs with an employment adviser or a union.

Where next?

Insurance, work and genetic information: more detail sets out the rules and the gaps more fully. Joining research without learning your status covers research participation, and inherited prion disease explained the genetics behind all of it.

This page is information only. It is not legal, insurance, medical or financial advice, and rules change, so check the current position for your own country before relying on anything here.

Sources for this page