Abstract
BackgroundThe use of genetic test results in risk-rated insurance is a significant concern internationally, with many countries banning or restricting the use of genetic test results in underwriting. In Australia, life insurers’ use of genetic test results is legal and self-regulated by the insurance industry (Financial Services Council (FSC)). In 2018, an Australian Parliamentary Inquiry recommended that insurers’ use of genetic test results in underwriting should be prohibited. In 2019, the FSC introduced an industry self-regulated moratorium on the use of genetic test results. In the absence of government oversight, it is critical that the impact, effectiveness and appropriateness of the moratorium is monitored. Here we describe the protocol of our government-funded research project, which will serve that critical function between 2020 and 2023.MethodsA realist evaluation framework was developed for the project, using a context-mechanism-outcome (CMO) approach, to systematically assess the impact of the moratorium for a range of stakeholders. Outcomes which need to be achieved for the moratorium to accomplish its intended aims were identified, and specific data collection measures methods were developed to gather the evidence from relevant stakeholder groups (consumers, health professionals, financial industry and genetic research community) to determine if aims are achieved. Results from each arm of the study will be analysed and published in peer-reviewed journals as they become available.DiscussionThe A-GLIMMER project will provide essential monitoring of the impact and effectiveness of the self-regulated insurance moratorium. On completion of the study (3 years) a Stakeholder Report will be compiled. The Stakeholder Report will synthesise the evidence gathered in each arm of the study and use the CMO framework to evaluate the extent to which each of the outcomes have been achieved, and make evidence-based recommendations to the Australian federal government, life insurance industry and other stakeholders.
Highlights
The use of genetic test results in risk-rated insurance is a significant concern internationally, with many countries banning or restricting the use of genetic test results in underwriting
The Regulatory Evaluation Report will synthesise the evidence gathered in each arm of the study and use the CMO framework to evaluate the extent to which the moratorium, as implemented by the Financial Services Council (FSC) Standard, has achieved the outcomes intended by the Parliamentary Joint Committee (PJC) recommendations
Our project brings together Australia’s leading researchers, clinicians, patient groups, policy experts and industry representatives to answer an over-arching research question—to what extent does the self-regulated FSC moratorium achieve the aims of addressing concerns with genetic discrimination (GD) as identified by the Parliamentary Joint Committee?
Summary
The use of genetic test results in risk-rated insurance is a significant concern internationally, with many countries banning or restricting the use of genetic test results in underwriting. In response to the need to address the social and financial impacts of GD in life insurance, many countries have banned or restricted the use of genetic test results in underwriting [2]. Legislation such as Canada’s Genetic Nondiscrimination Act (2017) prohibits insurers (and all other entities offering goods and services) from using genetic test results without an individual’s express consent. It does not apply to life insurance, some individual states have legislated to limit genetic discrimination in life insurance [14]
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