This page exists so that a request does not have to be negotiated twice. It states what we decline, so that an underwriter, actuary or analyst can tell in a minute whether we are any use to them.
What we hold
Public information about prion disease: organisations, tests, trials, regulations, published studies, and plain-language explanations for families. Every public claim carries a source and a date it was last checked.
We hold no genetic reports, no test results, no medical records and no risk status for any person. Our draft charter commits the project never to keep a registry or list of at-risk people or genetic results, and never to store those records or ask anyone to paste them into AI tools.
What we will not produce
Risk inputs of any kind. No scores, rating factors, prevalence estimates built for pricing, survival curves prepared for reserving, or claims assumptions. We will not derive them from our pages on request, and we will not review a model that uses them.
Individual or household information. We cannot confirm whether a named person, family or address is affected or at risk, and we do not accept documents of that kind.
Eligibility or verification services. We do not confirm a diagnosis, a variant, a test result or a trial enrolment for underwriting, claims or employment purposes.
Bespoke analysis for commercial use. We do not take paid work, and the project takes no advertising, sponsorship, paid placement or data licensing.
Interpretation of a person’s situation. That belongs with their clinician and genetic counsellor, and nothing we publish is medical, legal, insurance or financial advice. No lawyer has reviewed these pages.
Why the line sits here
Because prion disease families are small in number and easy to identify. A dataset that is statistically unremarkable for a common condition can single out a family in a rare one, and a genetic result is information about relatives who never asked for it.
There is also a documented behavioural cost. The UK government’s 2025 review of the voluntary code on genetic testing and insurance reports hearing 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. In a disease where people at genetic risk are the group most likely to be eligible for prevention trials, anything that deepens that reluctance works against the only treatments in development.
What we will do
Answer a factual question about a public rule, a surveillance figure or a published study, and point to the source.
Correct an error. If a page is wrong, tell us with a public source and we will fix it or take the page down, and log the correction.
Say when we do not know. Our pages mark what has not been verified rather than smoothing it over.
Where next
Rules by country covers the definitional detail. Protecting families sets out the two forms of discrimination families report and what we ask of insurers and care providers. The insurers brief is the summary table.
Corrections and factual questions go to corrections@thegenerativebrain.org. Requests covered by this page will be declined with a link to it.