Objectives and importance of study: Genetic discrimination is a health policy issue of international concern to clinicians, patients, researchers, and policy makers, and threatens the success of genomic medicine. In Australia, genetic discrimination in life insurance is legal and leads to public health harms, including deterring at-risk individuals from clinically indicated testing. In 2018, a Parliamentary Joint Committee recommended an urgent ban on the use of predictive genetic test results in life insurance underwriting in Australia, to be implemented in a form similar to the UK Code on genetic testing and life insurance. In 2019, the insurance industry, through the Financial Services Council (FSC), introduced a self-regulated moratorium that applies until 2024, but only to life insurance policies up to certain financial limits. The FSC moratorium will be reviewed in late 2022, but has no government oversight.

Study type: Policy implementation evaluation

Methods: We used policy evaluation methods to 1) summarise the key recommendations of the 2018 Parliamentary Committee that are directed towards practical aspects of policy development and content; and 2) assess the level of disparity between the implemented moratorium and the recommendations of the Committee.

Results: There is a substantial disparity between the Australian moratorium and the Parliamentary Committee recommendations across key areas, including addressing self-regulation, co-development of policy, protection of tests taken during its term, and similarity with the UK Code. The FSC moratorium offers less protection to consumers than the UK Code on a number of measures, including the level of financial coverage, the involvement of government, certainty provided to individuals who have genetic testing, and the treatment of research results.

Conclusions: The FSC moratorium is a step forward for Australia, but falls short of the Parliamentary recommendations. Further regulation by the Australian Government may be required to achieve the aims of the Parliamentary recommendations and ensure the intended level of consumer protection.