Evidence map›Paper›PMID 31281182›Full record

ArticleEuropean journal of human genetics : EJHG2020

Genetic discrimination by Australian insurance companies: a survey of consumer experiences.

Jane Tiller, Susan Morris, Toni Rice, Krystal Barter, Moeen Riaz, Louise Keogh, Martin B Delatycki, Margaret Otlowski, Paul Lacaze

Erratum issuedAbstract read
PubMed Full text at PMC Publisher
In one paragraph

Article in European journal of human genetics : EJHG, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. An erratum has been issued. Cited by 27 papers, 2 of them syntheses that pooled it.

0numbers the graph read from it
0cells of the map it votes in
27citing papers in PubMed, 2 pooled it
–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

27 citing papers in PubMed, 2 syntheses or guidelines pooled it.

  1. Pooled it
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  12. Genetic Testing of Movements Disorders: A Review of Clinical Utility.Tremor and other hyperkinetic movements (New York, N.Y.) · 2024
    Review
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4 · The record

Corrections and comments

5 · Who and what money

Authors and funding

9 authors.

Jane TillerPublic Health Genomics, School of Public Health and Preventive Medicine, Monash University, Melbourne, VIC, Australia. jane.tiller@monash.edu.
Susan MorrisLynch Syndrome Australia, The Summit, QLD, Australia.
Toni RiceLynch Syndrome Australia, The Summit, QLD, Australia.
Krystal BarterPink Hope Community Limited, Narrabeen, NSW, Australia.
Moeen RiazPublic Health Genomics, School of Public Health and Preventive Medicine, Monash University, Melbourne, VIC, Australia.
Louise KeoghCentre for Health Equity, Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, VIC, Australia.
Martin B DelatyckiVictorian Clinical Genetics Services, Parkville, VIC, Australia.
Margaret OtlowskiCentre for Law and Genetics, Faculty of Law, University of Tasmania, Hobart, TAS, Australia.
Paul LacazePublic Health Genomics, School of Public Health and Preventive Medicine, Monash University, Melbourne, VIC, Australia.ORCID http://orcid.org/0000-0002-0902-6798

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

We report previously undocumented evidence of genetic discrimination by Australian insurance companies, obtained through direct consumer reports. We surveyed 174 consumers with cancer-predisposing variants, recruited by cancer organisations Lynch Syndrome Australia and Pink Hope. Questions related to experiences accessing risk-rated insurance after genetic testing. Results indicate that both legal (permitted under current regulation) and illegal discrimination is occurring. Although some respondents had not applied for risk-rated insurance, or had insurance in place before genetic testing (n = 100), those seeking new policies (n = 74) commonly experienced difficulties obtaining insurance (86%, 64/74). Of those experiencing difficulties, 50% (32/64) had no prior history or symptoms of cancer, and had undertaken risk reduction through surveillance and/or preventative surgery. Seventy-seven percent (49/64) reported difficulties related to life insurance. Follow-up telephone interviews with four respondents further described cases of apparent illegal breaches. All reports of discrimination identified were, to our knowledge, previously unreported in the literature. The number of cases suggests a systemic problem with the Australian life insurance industry. We support calls for government oversight of the inherently conflicted model of industry self-regulation in Australia, and an immediate ban on the use of genetic test results in insurance underwriting.

Indexed as

Genetic Predisposition to DiseaseInsurance Selection BiasAustraliaColorectal Neoplasms, Hereditary NonpolyposisGenetic TestingHumansInsurance, HealthPatientsSocial DiscriminationSurveys and Questionnaires

Identifiers

PMID31281182
PMCPMC6906286

What OpenQuestion holds

Textmetadata
LicenceCC BY
Read underepoch 390

Registered trials

None linked

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.