Around the world, the use of genetic test results in insurance underwriting has raised serious concerns, leading many countries to restrict or ban the practice. In contrast, Australian life insurers are legally permitted to consider genetic information, under rules set by the industry itself through the Financial Services Council (FSC). A 2018 Parliamentary Inquiry recommended prohibiting this practice, and in 2019 the FSC responded with a self-imposed moratorium. Because there is no government regulation, it is vital to independently evaluate how effective and appropriate this moratorium is. This article presents the protocol for a government-funded study designed to provide that evaluation between 2020 and 2023. The project applies a realist evaluation framework, using a context–mechanism–outcome (CMO) approach to examine whether the moratorium meets its intended objectives. Key outcomes were identified, and tailored methods were created to gather evidence from different stakeholders, including consumers, health professionals, the insurance sector, and the genetics research community. Data from these groups will be analysed separately, with findings disseminated through peer-reviewed publications. The A-GLIMMER study offers independent oversight of the industry-led moratorium, assessing both its impact and its effectiveness. At the project’s conclusion, a Stakeholder Report will consolidate findings across all study arms, applying the CMO framework to evaluate progress against intended outcomes. The report will also provide evidence-based guidance for policymakers, insurers, and other stakeholders on the future of genetic information in life insurance.
