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.

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The impact of ‘uninformative’ BRCA1/2 genetic test results on health professionals, caring for affected and unaffected women with a significant breast cancer family history

European Journal of Surgical Oncology ◽

10.1016/j.ejso.2009.07.017 ◽

2009 ◽

Vol 35 (11) ◽

pp. 1207

Author(s):

Audrey Ardern-Jones ◽

R. Kenen ◽

E. Lynch ◽

R. Doherty ◽

R. Eeles

Keyword(s):

Breast Cancer ◽

Family History ◽

Health Professionals ◽

Genetic Test ◽

Test Results ◽

Breast Cancer Family ◽

Cancer Family ◽

Genetic Test Results ◽

The Impact ◽

Breast Cancer Family History

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How Well Do Customers of Direct-to-Consumer Personal Genomic Testing Services Comprehend Genetic Test Results? Findings from the Impact of Personal Genomics Study

Public Health Genomics ◽

10.1159/000431250 ◽

2015 ◽

Vol 18 (4) ◽

pp. 216-224 ◽

Cited By ~ 46

Author(s):

Jenny E. Ostergren ◽

Michele C. Gornick ◽

Deanna Alexis Carere ◽

Sarah S. Kalia ◽

Wendy R. Uhlmann ◽

...

Keyword(s):

Genetic Test ◽

Genomic Testing ◽

Test Results ◽

Personal Genomics ◽

Personal Genomic ◽

Personal Genomic Testing ◽

Direct To Consumer ◽

Genetic Test Results ◽

The Impact

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

10.1101/2021.05.25.21257683 ◽

2021 ◽

Author(s):

Jane M Tiller ◽

Louise Keogh ◽

Aideen McInerney-Leo ◽

Andrea Belcher ◽

Kristine Barlow-Stewart ◽

...

Keyword(s):

Life Insurance ◽

Health Professionals ◽

Online Survey ◽

Insurance Industry ◽

Self Regulation ◽

Test Results ◽

Australian Health ◽

Life Insurance Industry ◽

Genetic Test Results

Background In 2019, the Australian life insurance industry introduced a partial moratorium (ban) limiting the use of genetic test results in life insurance underwriting. The moratorium is industry self-regulated and applies only to policies below certain financial limits (eg AUD$500,000 of life cover). Methods We surveyed Australian health professionals (HPs) who discuss genetic testing with patients, to assess knowledge of the moratorium; reported patient experiences since its commencement; and HP views regarding regulation of genetic discrimination (GD) in Australia. Results Between April-June 2020, 166 eligible HPs responded to the online survey. Of these, 86% were aware of the moratorium, but <50% had attended related training/information sessions. Only 16% answered all knowledge questions correctly, yet 69% believed they had sufficient knowledge to advise patients. Genetics HPs' awareness and knowledge were better than non-genetics HPs' (p<0.05). There was some reported decrease in patients delaying/declining testing after the moratorium's introduction, however 42% of HPs disagreed that patients were more willing to have testing post-moratorium. Although many (76%) felt the moratorium resolved some GD concerns, most (88%) still have concerns, primarily around self-regulation, financial limits and the moratorium's temporary nature. Almost half (49%) of HPs reported being dissatisfied with the moratorium as a solution to GD. The majority (95%) felt government oversight is required, and 93% felt specific Australian legislation regarding GD is required. Conclusion While the current Australian moratorium is considered a step forward, most HPs believe it falls short of an adequate long-term regulatory solution to GD in life insurance.

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Parent perceptions of offspring responses to parental communication of BRCA1/2 test results

Journal of Clinical Oncology ◽

10.1200/jco.2009.27.15_suppl.1511 ◽

2009 ◽

Vol 27 (15_suppl) ◽

pp. 1511-1511 ◽

Cited By ~ 1

Author(s):

A. R. Bradbury ◽

L. Patrick-Miller ◽

B. Egleston ◽

C. Sands ◽

M. Feigon ◽

...

Keyword(s):

Genetic Test ◽

Positive Impact ◽

Childhood And Adolescence ◽

Test Results ◽

Variant Of Uncertain Significance ◽

Mutation Carriers ◽

Genetic Test Results ◽

Self Reports ◽

Uncertain Significance ◽

The Impact

1511 Background: Many BRCA1/2 mutation carriers report sharing their genetic test results with their minor children. The impact of this communication on offspring remains unknown. Methods: 163 parents who had BRCA1/2 testing completed qualitative interviews regarding their experiences with communication of their genetic test results to offspring. Descriptive responses were coded and response proportions utilized to summarize results. We used multiple regressions fit by GEE to test associations with disclosure. We controlled for parent mutation status in each regression. Results: 163 parents (52 BRCA1/2 mutation carriers) reported on 323 offspring 5 to 25 years old at the time of parent genetic testing. 107 (66%) parents reported disclosing to at least one offspring. Child age (p < 0.001) and parent cancer history (p = 0.004) were positively associated with disclosure. Parents without a BRCA1/2 mutation were more likely to communicate test results than parents with a mutation (p = 0.007). Among parents who disclosed, few (14%) reported they perceived their offspring to have had an initial negative affective or behavioral response. Others (13%) reported offspring concern for self and family. Reports of initial negative responses and concern were more frequent among parents with a mutation or a variant of uncertain significance. Many parents reported that the communication had no significant impact (39%) or a positive impact (36%) on their offspring. Conclusions: Many parents report sharing BRCA1/2 test results with their offspring. Parent self-reports suggest that they do not perceive most offspring to experience adverse reactions to this communication. Self-reports suggest that offspring learning of a BRCA1/2 mutation or a variant of uncertain significance may be more susceptible to initial negative reactions. Further research is necessary to explore psychosocial and behavioral responses to learning of hereditary risk during childhood and adolescence, and to inform the development of interventions to optimize adaptive response. No significant financial relationships to disclose.

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BRCA testing concordance with national guidelines for patients with breast cancer in community cancer programs.

Journal of Clinical Oncology ◽

10.1200/jco.2020.38.15_suppl.1526 ◽

2020 ◽

Vol 38 (15_suppl) ◽

pp. 1526-1526

Author(s):

Leigh Boehmer ◽

Latha Shivakumar ◽

Christine B. Weldon ◽

Julia Rachel Trosman ◽

Stephanie A. Cohen ◽

...

Keyword(s):

Breast Cancer ◽

Family History ◽

High Risk ◽

Genetic Test ◽

Breast Conserving Surgery ◽

Test Results ◽

Cancer Genes ◽

National Guidelines ◽

Genetic Test Results ◽

The Impact

1526 Background: Current National Comprehensive Cancer Network guidelines for genetic/familial high-risk assessment state that testing for highly penetrant breast/ovarian cancer genes is clinically indicated for women with early onset (≤ 45 years) or metastatic HER-2 negative breast cancer. A recent Association of Community Cancer Centers (ACCC) survey (N = 95) showed that > 80% of respondents reported ≤ 50% testing rate of patients with breast cancer who met guidelines. Given this disconnect, ACCC partnered with 15 community cancer programs to assess practice gaps and support interventions to improve access to genetic counseling (GC)/testing. Methods: Pre-intervention data from 9/15 partner programs for women diagnosed with stages 0-III breast cancer between 01/01/2017 and 06/30/2019 was collected. De-identified variables included: family history documentation, GC appointment/test results, and timing of results relative to treatment decisions. Results: There were 2691 women with stages 0-III breast cancer. Forty-eight percent (1284/2691) had a documented high-risk family history, 57% (729/1284) of whom had a GC appointment. This was a significantly higher rate of GC compared to the 23% (181/778) of women with no family history and 6% (35/629) of women with no documentation of family history (p < 0.0001). Patients ≤ 45 years old attended a GC appointment 72% (199/278) of the time and 49% (135/278) had genetic test results, with 84% (113/135) receiving results before surgery. For women with test results available before surgery, 37% (119/322) had breast conserving surgery, compared to 60% (144/240) with test results disclosed post-operatively (p < 0.0001). Conclusions: Genetic testing is underutilized in a community cohort of women with breast cancer. Further analysis is needed to understand the impact genetic test results have on surgical decisions. Opportunities exist to improve current rates of appropriate GC/testing. ACCC will share results of quality improvement projects to illuminate which strategies hold promise in reducing the hereditary breast cancer GC/testing practice gap.

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