Monitoring the genetic testing and life insurance moratorium in Australia: a national research project

Tiller, Jane; Winship, Ingrid; Otlowski, Margaret; Lacaze, Paul

doi:10.5694/mja2.50922

Cited by 19 publications

(13 citation statements)

References 10 publications

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“…37 In the Australian context, a current industry-led moratorium protects consumers from providing life insurers with the results of genetic test results for policies up to set thresholds (eg, A$500,000 for death cover), whereas similar protections do not exist in the United States. 38 Members of the public have concerns regarding the impact of genomic testing results on life insurance, and this may extend to the results of PRSs. 13,20,34,39 In our study, if a PRS test impacted life insurance, it was negatively associated with choosing the test, which reflects the influence that disclosing results to life insurers has on preferences for genomic sequencing in the Australian setting.…”

Section: Discussionmentioning

confidence: 99%

Preferences for a polygenic test to estimate cancer risk in a general Australian population

Venning

Saya²,

Lourenço³

et al. 2022

Genetics in Medicine

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Section: Discussionmentioning

confidence: 99%

Preferences for a polygenic test to estimate cancer risk in a general Australian population

Venning

Saya²,

Lourenço³

et al. 2022

Genetics in Medicine

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“…Further, steps will be taken to ensure participants understand that high risk screening results indicate increased risk, not disease diagnoses. Other identified harms include the potential for genetic discrimination and compromised access to life insurance products 19 . This risk must be weighed by each individual against the potential preventive health benefits of DNA screening, through transparent information provision and informed consent.…”

mentioning

confidence: 99%

Population DNA screening for medically actionable disease risk in adults

Lacaze

Tiller

Winship

et al. 2022

Medical Journal of Australia

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“…The aims of the recommended policy change in this area, as discussed in the PJC Report [20] Our research project will assess whether the moratorium is effective in achieving these aims. This research will serve a critical role in increasing the evidence base internationally and helping Australia achieve appropriate long-term regulation for this important issue, taking into consideration the perspective of all key stakeholders [21].…”

Section: Research Question: To What Extent Does the Self-regulated Fsc Moratorium Achieve The Critical Policy Aims Identified By The Parlmentioning

confidence: 99%

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

et al. 2021

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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.

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Monitoring the genetic testing and life insurance moratorium in Australia: a national research project

Cited by 19 publications

References 10 publications

Preferences for a polygenic test to estimate cancer risk in a general Australian population

Preferences for a polygenic test to estimate cancer risk in a general Australian population

Population DNA screening for medically actionable disease risk in adults

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

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