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

Tiller, J, McInerney-Leo, A, Belcher, A, Boughtwood, T, Gleeson, Penelope, Delatycki, M, Barlow-Stewart, K, Winship, I, Otlowski, M, 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, pp. 1-14, doi: 10.1186/s12910-021-00634-2.

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Title Study protocol: the Australian genetics and life insurance moratorium—monitoring the effectiveness and response (A-GLIMMER) project
Author(s) Tiller, J
McInerney-Leo, A
Belcher, A
Boughtwood, T
Gleeson, PenelopeORCID iD for Gleeson, Penelope orcid.org/0000-0003-2798-1649
Delatycki, M
Barlow-Stewart, K
Winship, I
Otlowski, M
Keogh, L
Lacaze, P
Journal name BMC Medical Ethics
Volume number 22
Article ID 63
Start page 1
End page 14
Total pages 14
Publisher BioMed Central
Place of publication London, Eng.
Publication date 2021
ISSN 1472-6939
1472-6939
Keyword(s) A-GLIMMER
Australia
Genetic discrimination
Genetics
Life insurance
Moratorium
Realist evaluation
Stakeholder engagement
Summary 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.
Language eng
DOI 10.1186/s12910-021-00634-2
Indigenous content off
Field of Research 2201 Applied Ethics
HERDC Research category C1 Refereed article in a scholarly journal
ERA Research output type C Journal article
Free to Read? Yes
Persistent URL http://hdl.handle.net/10536/DRO/DU:30151590

Document type: Journal Article
Collections: Law
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Every reasonable effort has been made to ensure that permission has been obtained for items included in DRO. If you believe that your rights have been infringed by this repository, please contact drosupport@deakin.edu.au.