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.
Highlights
In Australia, discrimination on the basis of genetic status is prohibited by the Disability Discrimination Act 1992(Cth), but an exception allows insurance discrimination on Supplementary information The online version of this article contains supplementary material, which is available to authorised users.Global Health, The University of Melbourne, Melbourne, VIC, Australia 5 Victorian Clinical Genetics Services, Parkville, VIC, Australia 6 Murdoch Children’s Research Institute, Parkville, VIC, Australia 7 Centre for Law and Genetics, Faculty of Law, University of Tasmania, Hobart, TAS, Australia actuarial grounds
We partnered with education and advocacy bodies for individuals with inherited cancer-predisposing variants: Lynch Syndrome Australia (LSA) and Pink Hope (PH)
Case 1: Evelyn No 47 y/o BRCA1 variant detected at age 41
Summary
Genetic discrimination must be actuarially or reasonably justified. Insurers must consider risk-reducing measures, including surveillance and surgery. This requirement creates a distinction between legal genetic discrimination, where an insurer’s actions are within current legal regulation (but ethically contentious [1]), and illegal genetic discrimination—where an insurer’s behaviour is in breach of a clear regulatory requirement. Private health insurance, which is community rated in Australia (no individual risk assessment), is not affected
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