One of the first pieces of advocacy undertaken by FH Australia in 2023 was a response to government consultation on the use of genetic testing results in life insurance underwriting. For people living with FH, genetic testing allows for early intervention and presents opportunities for life-saving treatment to prevent coronary heart disease at an early age.
In Australia, the Commonwealth Disability Discrimination Act 1992 (section 46) allows risk-rated insurers to discriminate on the basis of both predictive and diagnostic genetic test results, if based on actuarial or other evidence. This means genetic discrimination in life insurance underwriting, unlike in health insurance, is legal.
Our organisation’s perspective is that it is paradoxical for people living with FH who undertake genetic testing in order to access those treatments to be discriminated against and potentially unable to access full insurance thresholds. Discrimination can be a barrier for many people and discourage them from engaging in genetic testing.
FH Australia advocated for a total ban on the use of genetic results in life insurance underwriting in alignment with Monash University’s A-GLIMMER report[1] and the Australian Medical Association. Industry self-regulation and temporary moratoriums are ineffective solutions to genetic discrimination, and with minimal government oversight, will ultimately harm individuals through denial or reduction of service offerings.
[1] Jane Tiller, Penny Gleeson, Aideen McInerney-Leo, Louise Keogh, Kristen Nowak, Kristine Barlow Stewart, Tiffany Boughtwood, Martin Delatycki, Ingrid Winship, Margaret Otlowski and Paul Lacaze. The A GLIMMER (Australian Genetics & Life Insurance Moratorium: Monitoring the Effectiveness and Response) Project: Final Stakeholder Report (Monash University, 2023) https://doi.org/10.26180/23564538.v1