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


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Tiller, J, McInerney-Leo, A, Belcher, A, Boughtwood, T, Gleeson, P, Delatycki, M, Barlow-Stewart, K, Winship, I, Otlowski, M ORCID: 0000-0003-4707-4325, Keogh, L and Lacaze, P 2021 , 'Study protocol: the Australian genetics and life insurance moratorium - monitoring the effectiveness and response (A-GLIMMER) project' , BMC Medical Ethics, vol. 22, no. 1 , pp. 1-14 , doi: 10.1186/s12910-021-00634-2.

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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.

Item Type: Article
Authors/Creators:Tiller, J and McInerney-Leo, A and Belcher, A and Boughtwood, T and Gleeson, P and Delatycki, M and Barlow-Stewart, K and Winship, I and Otlowski, M and Keogh, L and Lacaze, P
Keywords: genetics, life insurance, moratorium, genetic discrimination
Journal or Publication Title: BMC Medical Ethics
Publisher: BioMed Central Ltd.
ISSN: 1472-6939
DOI / ID Number: 10.1186/s12910-021-00634-2
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© The Author(s) 2021. Open Access This article is licensed under a Creative Commons Attribution 4.0 International (CC BY 4.0) License, ( which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made.

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