Study protocol: the Australian genetics and life insurance moratorium—monitoring the effectiveness and response (A-GLIMMER) project

Abstract

Background 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 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. Methods A 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. Discussion The 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.

Health professionals’ views and experiences of the Australian moratorium on genetic testing and life insurance: A qualitative study

“…Past research by this group has demonstrated significant consumer concerns regarding the use of genetic test results by consumers existed before the implementation of the moratorium [ 37 ]. Further studies have been designed to gather updated views from Australian consumers and patients directly about this issue [ 17 ] and will be reported separately.…”

“…This study forms part of the A-GLIMMER project [ 21 ]. The first element of this study consisted of an online survey distributed to HPs in 2020, to gather evidence regarding their views and experiences of the moratorium.…”

“…In recognition of the importance of this issue, the Australian government has funded a three-year project to monitor the effectiveness of the FSC moratorium: the Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response (A-GLIMMER) [ 16 ]. The project is a national study, collecting views and evidence from multiple stakeholders (health professionals, consumers, researchers/research participants, and the financial services industry) [ 17 ].…”

Attitudes of Australian dermatologists on the use of genetic testing: A cross-sectional survey with a focus on melanoma

“…Questions exploring perceptions regarding genetic testing identified a knowledge gap regarding the potential impact on insurance in Australia. Less than a third of respondents were aware of the 2019 Australian moratorium on the use of genetic testing results in insurance underwriting ( Tiller et al, 2021a ). Furthermore, 79% incorrectly considered that genetic testing could impact a patient’s ability to access private health insurance, as this is not based on a risk assessment in Australia ( Tiller et al, 2020 ).…”

A step forward, but still inadequate: Australian health professionals’ views on the genetics and life insurance moratorium

“…To our knowledge, there has been no survey of HPs following the introduction of the FSC moratorium. This study forms a key part of the Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response (A-GLIMMER) Project - funded by the Australian government[22 23]. The purpose of the Project is to assess the extent to which the FSC moratorium achieves the policy aims identified by the Parliamentary Joint Committee on Corporations and Financial Services.…”