Table 1 Overview of genetic discrimination protective regimes for Australia, Canada, USA, and United Kingdom and potential applicability to PGS

Australia FSC Standard 11: Moratorium on Genetic Tests in Life Insurance¹²

Industry led moratorium that applies to individually underwritten life insurance. This does not extend to private health insurance, which is community rated (i.e., premiums apply universally) and not subject to underwriting.

Under the moratorium, insurance providers can ask for or use genetic test results if the total amounts of cover would exceed the prescribed limits, provided that an evidence base shows the test has relevance to the cover applied for.

Favorable Genetic Test results and evidence based preventative treatment, or adherence to evidence based preventative measures, can be accounted for in underwriting.

Underwriters cannot ask applicants to get genetic testing or disclose genetic test results taken as part of a medical research study (provided the applicant has not received the results or asked not to receive them).

•$500,000 Death Cover.

•$500,000 Total permanent disability Cover

•$200,000 Trauma and/or critical illness Cover.

•$4,000/ month Income protection

Genetic test is broadly defined as ‘a test which examines a person’s chromosomes or DNA’ but does not include non-genetic medical tests.

The current framing is likely broad enough to capture PGS.

For genetic tests to be used in underwriting the limits must be exceeded and insurers need to justify that the test has relevance to the cover being applied for (per Disability Discrimination Act 1992 (Cth)).

Canada: Genetic Non-Discrimination Act¹³

Federal legislation that prohibits any person from requiring an individual to undergo a genetic test or provide the results of a genetic test as a condition of:

•providing goods or services to that individual

•entering into or continuing a contract or agreement

•offering or continuing specific terms or conditions in a contract or agreement.

No limits

Genetic test is broadly defined as ‘a test that analyzes DNA, RNA or chromosomes for purposes such as the prediction of disease or vertical transmission risks, or monitoring, diagnosis or prognosis’.

The current framing is likely broad enough to capture PGS.

UK: Code on Genetic Testing and Insurance¹¹

Agreement developed between the UK Government and Association of British Insurers (ABI) which applies to ABI members.

Insurers will not require applicants to undertake a diagnostic or predictive genetic test to obtain insurance and will only ask applicants to disclose the result of a predictive genetic test result for approved conditions (currently only Huntington’s disease) for policies above the prescribed financial limits. For insurance other than life, critical illness and income protection, predictive genetic test results will not be asked for, or taken into account, whatever the level of cover.

Genetic tests results given to the insurer accidentally or voluntarily will only be considered if it is for the applicant’s benefit.

Life Insurance £500,000

Critical Illness

£300,000

Insurance

Income Protection

£30,000

Genetic test ‘refers to a test which looks for a particular gene variant. This is regardless of whether the test was carried out as part of a single-gene test, a panel, or up to the level of whole genome sequencing’.

The current framing is likely broad enough to capture PGS.

US: Genetic Information Nondiscrimination Act (GINA) and state laws¹⁴

The federal protection extends only to health insurance and employment, it sets out the base level of protection with additional protections left to the discretion of individual states.

Some states have enacted laws providing consumers additional protections in the context of life insurance, but protections are often limited. Indeed, most states enacting additional protective legislation subject the use of genetic information to informed consent or actuarial requirements rather than outright prohibition.

Protection only extends to health insurance and employment, not life insurance.

Does not apply to employers with fewer than 15 employees.

Under GINA, genetic test means ‘an analysis of human DNA, RNA, chromosomes, proteins or metabolites, that detects genotypes, mutations or chromosomal changes’.

The current framing is likely broad enough to capture PGS. With respect to state laws, definitions of genetic test are determined by individual state legislation but similarly tend to rely on broad definitions.