The country table, with the four main jurisdictions side by side, is on the insurers brief. This page adds the definitional and sub-national detail that the table cannot carry. It is a summary of public texts, not legal advice, and no lawyer has reviewed it. We provide no underwriting input. What we do not provide sets out that limit.
What counts as genetic information?
This is where the instruments diverge most, and it decides whether a prion disease family is protected at all.
The US employment title defines genetic information to include the person’s own genetic tests, genetic tests of family members, and the manifestation of a disease or disorder in family members. Family medical history is therefore inside the definition. It also includes requesting or receiving genetic services, and taking part in clinical research that includes them, which is relevant directly for relatives considering a natural history study. Family member reaches relatives to the fourth degree. Sex and age are excluded.
The same title states that using non-genetic medical information about a disease that has already manifested does not violate it, even where that disease has a genetic basis. For a family in which someone is already ill, that is the operative sentence.
The UK code works the other way round: rather than defining a protected class of information, it lists what insurers will not do and names the single predictive test they may use.
What else does the US employment title require?
Separation and confidentiality. Genetic information an employer holds must be kept on separate forms, in separate medical files, treated as a confidential medical record, with disclosure limited to a short list that includes the employee on written request, researchers complying with the federal human subjects rule, court orders, compliance investigations, family leave certification and certain public health purposes.
It also contains acquisition exceptions that are easy to trip over in practice, including inadvertent receipt of family medical history, voluntary wellness services with written authorisation and aggregate-only reporting to the employer, and information from commercially and publicly available publications, excluding medical databases and court records.
Do sub-national rules add anything?
Yes, in the United States, and they cover the lines that federal law leaves out. Florida’s 2020 bill, which became law as chapter 2020-159 after passing both chambers and being approved on 30 June 2020, applies to life insurers and long-term care insurers, and according to the legislature’s own summary bars cancelling, limiting or denying coverage on genetic information and setting premium rates that differ on it.
The bill page gives an effective date of 1 July 2020. Secondary descriptions circulate giving a start date for policies from 1 January 2021, and the enrolled text was not read for this page, so confirm the commencement wording in the statute before relying on either.
State rules vary in scope and in whether they reach family history, and they do not override stricter federal protection. A partner operating across states needs the state texts rather than this summary.
Which gaps are important for prion disease?
Three.
No predictive PRNP test is on the UK approved list, and no insurer has applied to add a condition in over 20 years, so predictive prion disease results sit outside approved use rather than being specifically addressed.
Life, disability and long-term care cover falls outside the US federal health insurance protection, which is the gap state laws such as Florida’s address unevenly.
Diagnostic results, and the manifestation of disease in the person or in relatives, remain usable in most of these instruments. For a disease that is identified in a family through an index case, that is the point at which protection stops being theoretical.
Corrections with a public source are welcome at corrections@thegenerativebrain.org. The regulations atlas tracks the underlying documents, and insurance and work is the family-facing version.