Background: Regulating the use of genetic information in insurance is an issue of ongoing international debate. In Australia, providers of life and other mutually rated insurance products can request applicants to disclose all results from any genetic test. Insurers can then use this information to adjust premiums and make policy decisions. The Australian Financial Services Council (FSC; an industry body) developed and maintains the relevant industry standard, which was updated in late 2016. Aims/Objective: To review the 2016 FSC Standard in light of relevant research and determine the legitimacy of the Australian regulatory environment regarding use of genetic information by insurers. Results: We identified five concerns arising from the 2016 FSC Standard: (1) use of results obtained from research; (2) the requirement for an applicant to disclose whether they are “considering” a genetic test; (3) failure to account for genome sequencing and other technology developments; (4) limited evidence regarding adverse selection; and (5) the inappropriateness of industry self-regulation. Conclusion: Industry self-regulation of the use of genetic information by life insurers, combined with a lack of government oversight, is inappropriate and threatens to impede the progress of genomic medicine in Australia. At this critical time, Australia requires closer government oversight of the use of genetic information in insurance.

Raithatha N, Smith RD: Disclosure of genetic tests for health insurance: is it ethical not to? Lancet 2004;363:395-396.
Malpas PJ: Is genetic information relevantly different from other kinds of non-genetic information in the life insurance context? J Med Ethics 2008;34:548-551.
Harper PS: Genetic testing, life insurance, and adverse selection. Philos Trans R Soc Lond B Biol Sci 1997;352:1063-1066.
Vukcevic D, Chen J: Thinking about life insurance through a genetic lens. Sydney, Institute of Actuaries of Australia, 2017. (cited June 7, 2017).
Butler J: Adverse selection, genetic testing and life insurance - lessons from health insurance in Australia. Agenda 2003;10:73-89.
Godard B, Raeburn S, Pembrey M, Bobrow M, Farndon P, Ayme S: Genetic information and testing in insurance and employment: technical, social and ethical issues. Eur J Hum Genet 2003;11(suppl 2):S123-S142.
Otlowski M: Exploring the concept of genetic discrimination. J Bioeth Inq 2005;2:165-176.
Joly Y, Ngueng Feze I, Simard J: Genetic discrimination and life insurance: a systematic review of the evidence. BMC Med 2013;11:25.
Barlow-Stewart K, Keays D: Genetic discrimination in Australia. J Law Med 2001;8:250-262.
Wauters A, Van Hoyweghen I: Global trends on fears and concerns of genetic discrimination: a systematic literature review. J Hum Genet 2016;61:275-282.
Otlowski M, Taylor S, Bombard Y: Genetic discrimination: international perspectives. Annu Rev Genomics Hum Genet 2012;13:433-454.
Keogh LA, Niven H, Rutstein A, Flander L, Gaff C, Jenkins M: Choosing not to undergo predictive genetic testing for hereditary colorectal cancer syndromes: expanding our understanding of decliners and declining. J Behav Med 2017;40:583-594.
Smit AK, Espinoza D, Newson AJ, Morton RL, Fenton G, Freeman L, et al: A pilot randomised controlled trial of the feasibility, acceptability and impact of giving information on personalised genomic risk of melanoma to the public. Cancer Epidemiol Biomarkers Prev 2016;26:212-221.
Keogh LA, van Vliet CM, Studdert DM, Maskiell JA, Macrae FA, St John DJ, et al: Is uptake of genetic testing for colorectal cancer influenced by knowledge of insurance implications? Med J Aust 2009;191:255-258.
Joly Y, Burton H, Knoppers BM, Feze IN, Dent T, Pashayan N, et al: Life insurance: genomic stratification and risk classification. Eur J Hum Genet 2014;22:575-579.
Financial Services Council: FSC Standard No 11 Genetic Testing Policy. Sydney, Financial Services Council, 2016. (cited March 15, 2017).
HM Government and Association of British Insurers: Concordat and Moratorium on Genetics and Insurance. London, HM Government, 2014. (cited May 1, 2017).
Soini S: Genetic testing legislation in Western Europe - a fluctuating regulatory target. J Community Genet 2012;3:143-153.
Australian Law Reform Commission: Protection of Human Genetic Information. Sydney, 2003. (updated September 13, 2016; cited April 21, 2017).
Australian Law Reform Commission: Essentially Yours: The Protection of Human Genetic Information in Australia. Sydney, Commonwealth of Australia, 2003. (cited April 21, 2017).
Australian Government: Full Australian Government Response to ALRC Report 96. Canberra, Australian Government, 2005. (cited April 21, 2017).
National Health and Medical Research Council: Human Genetics Advisory Committee (HGAC). Canberra, Australian Government, 2015. (cited April 21, 2017).
Investment and Financial Services Association: IFSA Testing Standard No 11: Genetic Testing Policy. Sydney, IFSA, 2005.
Financial Services Council: FSC Standard No 16 Family Medical History Policy. Sydney, Financial Services Council, 2016. (cited June 14, 2017).
NSW Health: Consultation - Statewide Biobanking Consent. Sydney, NSW Government, 2017. (cited June 14, 2017).
Stark Z, Tan TY, Chong B, Brett GR, Yap P, Walsh M, et al: A prospective evaluation of whole-exome sequencing as a first-tier molecular test in infants with suspected monogenic disorders. Genet Med 2016;18:1090-1096.
Stark Z, Schofield D, Alam K, Wilson W, Mupfeki N, Macciocca I, et al: Prospective comparison of the cost-effectiveness of clinical whole-exome sequencing with that of usual care overwhelmingly supports early use and reimbursement. Genet Med 2017;19:867-874.
Wolf SM, Amendola LM, Berg JS, Chung WK, Clayton EW, Green RC, et al: Navigating the research-clinical interface in genomic medicine: analysis from the CSER Consortium. Genet Med 2017, Epub ahead of print.
Human Genetics Society of Australasia: Position Statement: Genetic Testing and Life Insurance. Sydney, HGSA, 2013. (cited June 14, 2017).
Genomics England: Insurance. (cited June 15, 2017).
Ponder M, Statham H, Hallowell N, Moon JA, Richards M, Raymond FL: Genetic research on rare familial disorders: consent and the blurred boundaries between clinical service and research. J Med Ethics 2008;34:690-694.
Newson AJ, Schonstein L: Genomic testing in the paediatric population: ethical considerations in light of recent policy statements. Mol Diagn Ther 2016;20:407-414.
Martin AR, Gignoux CR, Walters RK, Wojcik GL, Neale BM, Gravel S, et al: Human demographic history impacts genetic risk prediction across diverse populations. Am J Hum Genet 2017;100:635-649.
Cooper DN, Krawczak M, Polychronakos C, Tyler-Smith C, Kehrer-Sawatzki H: Where genotype is not predictive of phenotype: towards an understanding of the molecular basis of reduced penetrance in human inherited disease. Hum Genet 2013;132:1077-1130.
Song W, Gardner SA, Hovhannisyan H, Natalizio A, Weymouth KS, Chen W, et al: Exploring the landscape of pathogenic genetic variation in the ExAC population database: insights of relevance to variant classification. Genet Med 2016;18:850-854.
Minikel EV, Vallabh SM, Lek M, Estrada K, Samocha KE, Sathirapongsasuti JF, et al: Quantifying prion disease penetrance using large population control cohorts. Sci Transl Med 2016;8:322ra9.
Van Driest SL, Wells QS, Stallings S, Bush WS, Gordon A, Nickerson DA, et al: Association of arrhythmia-related genetic variants with phenotypes documented in electronic medical records. JAMA 2016;315:47-57.
Walsh R, Thomson KL, Ware JS, Funke BH, Woodley J, McGuire KJ, et al: Reassessment of Mendelian gene pathogenicity using 7,855 cardiomyopathy cases and 60,706 reference samples. Genet Med 2017;19:192-203.
Natarajan P, Gold NB, Bick AG, McLaughlin H, Kraft P, Rehm HL, et al: Aggregate penetrance of genomic variants for actionable disorders in European and African Americans. Sci Transl Med 2016;8:364ra151.
Haemochromatosis Australia: World first insurance statement to benefit those at risk of Australia's most common genetic disease. 2013. (cited April 12, 2017).
Macdonald A: The actuarial relevance of genetic information in the life and health insurance context. Gatineau, Office of the Privacy Commissioner of Canada, 2011. (cited June 21, 2017).
Hoy M, Durnin M: The potential economic impact of a ban on the use of genetic information for life and health insurance. Gatineau, Office of the Privacy Commissioner of Canada, 2012. (cited June 21, 2017).
Office of the Privacy Commissioner of Canada: Statement on the use of genetic test results by life and health insurance companies. Gatineau, Office of the Privacy Commissioner, 2014. (cited June 9, 2017).
Otlowski M: Use of genetic test information in life insurance: an evaluation of different regulatory models. J Int Biotechnol Law 2005;2:99-104.
Financial Services Council: About the Financial Services Council (section: “Our Mission”). Sydney, FSC, 2017. (cited June 16, 2017).
Howell N: Revisiting the Australian code of banking practice: is self-regulation still relevant for improving consumer protection standards? UNSW Law J 2015;38:544-586.
Vogel D: The private regulation of global corporate conduct: achievements and limitations. Bus Soc 2010;49:68-87.
Keogh LA, Otlowski MF: Life insurance and genetic test results: a mutation carrier's fight to achieve full cover. Med J Aust 2013;199:363-366.
Taylor S, Treloar S, Barlow-Stewart K, Stranger M, Otlowski M: Investigating genetic discrimination in Australia: a large-scale survey of clinical genetics clients. Clin Genet 2008;74:20-30.
Otlowski M, Barlow-Stewart K, Taylor S, Stranger M, Treloar S: 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.
Barlow-Stewart K, Taylor SD, Treloar SA, Stranger M, Otlowski M: Verification of consumers' experiences and perceptions of genetic discrimination and its impact on utilization of genetic testing. Genet Med 2009;11:193-201.
Joly Y, Feze IN, Song L, Knoppers BM: Comparative approaches to genetic discrimination: chasing shadows? Trends Genet 2017;33:299-302.
You do not currently have access to this content.