Life insurance and genetic test results: a mutation carrier's fight to achieve full cover

Louise A Keogh and Margaret F A Otlowski
Med J Aust 2013; 199 (5): 363-366. || doi: 10.5694/mja13.10202


  • Currently, there is debate about life insurance companies’ use of genetic information for assessing applicants.
  • In his early 20s, James (pseudonym) was denied full life insurance cover because he revealed that he had discussed genetic testing with a genetic counsellor. He was later tested and found to carry a mutation in the MSH6 gene; after disclosing this, he was denied cover for cancer by two other life insurance companies.
  • Unsatisfied with the insurance companies’ risk assessments, and based on his understanding that regular colonoscopy significantly reduced his risk of cancer, James made a complaint to the Australian Human Rights Commission. After informing the third insurance company that he had done so, he was offered full coverage, which suggests that the company did not have actuarial data to justify its decision.
  • This case provides evidence of the high level of initiative and proactivity required for a consumer to achieve a fair result. Few Australians would be in a position to pursue the level of research and advocacy undertaken by James (a professional with scientific training).
  • We call on a collaborative approach between industry, government and researchers to address the issues that James’s case raises about genetic testing and life insurance.

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  • Louise A Keogh1
  • Margaret F A Otlowski2

  • 1 Centre for Women's Health, Gender and Society, University of Melbourne, Melbourne, VIC.
  • 2 University of Tasmania, Hobart, TAS.


Competing interests:

No relevant disclosures.

  • 1. Bombard Y, Palin J, Friedman JM, et al. Beyond the patient: the broader impact of genetic discrimination among individuals at risk of Huntington disease. Am J Med Genet B Neuropsychiatr Genet 2012; 159B: 217-226.
  • 2. Keogh LA, van Vliet CM, Studdert DM, et al. Is uptake of genetic testing for colorectal cancer influenced by knowledge of insurance implications? Med J Aust 2009; 191: 255-258. <MJA full text>
  • 3. Barlow-Stewart K, Taylor SD, Treloar SA, et al. Verification of consumers' experiences and perceptions of genetic discrimination and its impact on utilization of genetic testing. Genet Med 2009; 11: 193-201.
  • 4. Mould A. Implications of genetic testing: discrimination in life insurance and future directions. J Law Med 2003; 10: 470-487.
  • 5. Joly Y, Ngueng Feze I, Simard J. Genetic discrimination and life insurance: a systematic review of the evidence. BMC Med 2013; 11: 25.
  • 6. Financial Services Council. Genetic Testing Policy. FSC Standard No. 11. December 2005. (accessed Aug 2013).
  • 7. Australian Law Reform Commission, Australian Health Ethics Committee. Essentially yours: the protection of human genetic information in Australia. (ALRC Report 96.) Sydney: ALRC, 2003. (accessed Jul 2013).
  • 8. Otlowski M, Taylor S, Bombard Y. Genetic discrimination: international perspectives. Annu Rev Genomics Hum Genet 2012; 13: 433-454.
  • 9. Lynch HT, Lynch JF, Attard TA. Diagnosis and management of hereditary colorectal cancer syndromes: Lynch syndrome as a model. CMAJ 2009; 181: 273-280.
  • 10. Baglietto L, Lindor NM, Dowty JG, et al. Risks of Lynch syndrome cancers for MSH6 mutation carriers. J Natl Cancer Inst 2010; 102: 193-201.
  • 11. Järvinen HJ. Hereditary cancer: guidelines in clinical practice. Colorectal cancer genetics. Ann Oncol 2004; 15 Suppl 4: iv127-iv131.
  • 12. Otlowski M, Taylor S, Barlow-Stewart K, et al. The use of legal remedies in Australia for pursuing allegations of genetic discrimination: findings of an empirical study. Int J Discrim Law 2007; 9: 3-35. doi: 10.1177/135822910700900102.
  • 13. Otlowski M, Barlow-Stewart K, Taylor S, et al. Investigating genetic discrimination In the Australian life insurance sector: the use of genetic test results in underwriting, 1999-2003. J Law Med 2007; 14: 367-396.


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