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


Tiller, J and Morris, S and Rice, T and Barter, K and Riaz, M and Keogh, L and Delatycki, MB and Otlowsk, M and Lacaze, P, Genetic discrimination by Australian insurance companies: a survey of consumer experiences, European Journal of Human Genetics, 28 pp. 108-113. ISSN 1476-5438 (2019) [Refereed Article]


Copyright Statement

Copyright 2019 The Author(s) Licensed under Creative Commons Attribution 4.0 International (CC BY 4.0)

DOI: doi:10.1038/s41431-019-0426-1


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.

Item Details

Item Type:Refereed Article
Keywords:genetic discrimination, life insurance, consumer experiences
Research Division:Health Sciences
Research Group:Health services and systems
Research Field:Health services and systems not elsewhere classified
Objective Division:Law, Politics and Community Services
Objective Group:Justice and the law
Objective Field:Justice and the law not elsewhere classified
UTAS Author:Otlowsk, M (Professor Margaret Otlowski)
ID Code:135115
Year Published:2019
Web of Science® Times Cited:19
Deposited By:Law
Deposited On:2019-10-01
Last Modified:2021-03-16
Downloads:13 View Download Statistics

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