Evidence map›Paper›PMID 34020638›Full record

ArticleBMC medical ethics2021

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

Jane Tiller, Aideen McInerney-Leo, Andrea Belcher, Tiffany Boughtwood, Penny Gleeson, Martin Delatycki, Kristine Barlow-Stewart, Ingrid Winship, Margaret Otlowski, Louise Keogh and 1 more

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In one paragraph

Article in BMC medical ethics, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 7 papers.

0numbers the graph read from it
0cells of the map it votes in
7citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

7 citing papers in PubMed.

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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

11 authors.

Jane TillerPublic Health Genomics, Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, VIC, Australia. jane.tiller@monash.edu.ORCID 0000-0003-3906-6632
Aideen McInerney-LeoThe University of Queensland Diamantina Institute, The University of Queensland Dermatology Research Centre, Brisbane, QLD, Australia.
Andrea BelcherAustralian Genomics, Parkville, VIC, Australia.
Tiffany BoughtwoodMurdoch Children's Research Institute, Parkville, VIC, Australia.
Penny GleesonDeakin Law School, Melbourne, VIC, Australia.
Martin DelatyckiMurdoch Children's Research Institute, Parkville, VIC, Australia.
Kristine Barlow-StewartNorthern Clinical School, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia.
Ingrid WinshipDepartment of Medicine, University of Melbourne, The Royal Melbourne Hospital, Parkville, VIC, Australia.
Margaret OtlowskiFaculty of Law and Centre for Law and Genetics, University of Tasmania, Hobart, TAS, Australia.
Louise Keogh *Centre for Health Equity, Melbourne School of Population and Global Health, The University of Melbourne, Carlton, VIC, Australia.
Paul Lacaze *Public Health Genomics, Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, VIC, Australia.

Funding

Medical Research Futures Fund 76721National Health and Medical Research Council 1158111National Heart Foundation Future Leader Fellowship
6 · The paper itself

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. 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.

Indexed as

Insurance, LifeInsurance Selection BiasAustraliaData CollectionGenetic TestingHumansA-GLIMMERAustraliaGenetic discriminationGeneticsLife insuranceMoratoriumRealist evaluationStakeholder engagement

Identifiers

PMID34020638
PMCPMC8138092

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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.