Protecting people from genetic discrimination

What is the exposure for these families?

Two kinds, and only one of them is about insurance.

The first is the use of a predictive genetic result in an application for cover. Under the UK voluntary code, insurers agree not to require or pressure anyone into a genetic test, not to consider predictive results except in a very small minority of cases, and not to request results from tests done exclusively in research. One predictive test is approved for use, for Huntington’s disease, on life applications above 500,000 pounds. The government has received no insurer application to add a condition in over 20 years, so a predictive PRNP result is outside the approved use.

The second is discrimination in care. The Australian support network states that people at increased risk of CJD and families affected by genetic CJD may face discrimination or struggle to get adequate, timely medical treatment when infection control guidelines are not applied correctly. That is a service access problem rather than an underwriting one, and it is the one families raise most often.

Where do the insurance protections stop?

At the edges of the instruments themselves. The UK arrangement is a code agreed between government and an industry body, and adherence is a condition of membership of that body rather than a statutory duty. Diagnostic results, meaning results in someone who has symptoms, can be requested and used. Family medical history can be sought where relevant.

The 2025 review reports 8,281 genetic test results disclosed to insurers in 2024, of which 2,700 were predictive and 5,013 diagnostic, and 5 complaints about the use of a result, all resolved between company and customer. It treats the diagnostic figure as the more reliable trend because insurers disregard predictive results they should not have received. For a rare disease, numbers at that scale say nothing about how prion disease families are treated in particular, and no published breakdown by condition exists.

Does the fear of discrimination change behaviour?

It appears to, and the evidence is thin. The 2025 review states that the government has heard anecdotally that some people delay predictive tests because of insurance concerns, and plans to gather evidence on whether those concerns affect willingness to be tested or to join research.

The 2026 Israeli practice framework for testing relatives of people with CJD treats this as a standard part of pre-test discussion, and recommends that counselling and testing be publicly funded so that access does not depend on means.

That combination is the risk worth naming for partners: a deterrent effect on testing and research participation that nobody has yet measured, in a disease where people at genetic risk are the group most likely to be eligible for prevention trials.

What we ask

Three things, none of which require data about individuals.

Treat a predictive PRNP result as outside approved use wherever a code or statute allows only named conditions, and say so in writing to applicants who ask.

Do not treat at-risk status as a diagnosis. Being at increased risk of CJD is not having CJD, and the distinction is the one most often lost in correspondence.

For care providers, resolve infection control questions with the national prion service in writing before a placement decision, rather than at the point of admission. Care settings and more detail set out what the guidance requires.

Where next

Rules by country records what this site has checked, with dates. Insurance and work is the family-facing version. Corrections with a public source are welcome at corrections@thegenerativebrain.org.