'Health professionals’ views and experiences of the Australian moratorium on genetic testing and life insurance: A qualitative study' by Grace Dowling, Jane Tiller, Aideen McInerney-Leo, Andrea Belcher, Casey Haining, Kristine Barlow-Stewart, Tiffany Boughtwood, Penny Gleeson, Martin B. Delatycki, Ingrid Winship, Margaret Otlowski, Chris Jacobs, Louise Keogh & Paul Lacaze in (2022) European Journal of Human Genetics comments
Australian life insurance companies can legally use genetic test results in underwriting, which can lead to genetic discrimination. In 2019, the Financial Services Council (Australian life insurance industry governing body) introduced a partial moratorium restricting the use of genetic testing in underwriting policies ≤ $500,000 (active 2019–2024). Health professionals (HPs), especially clinical geneticists and genetic counsellors, often discuss the implications of genetic testing with patients, and provide critical insights into the effectiveness of the moratorium. Using a sequential explanatory mixed methods design, we interviewed 23 Australian HPs, who regularly discuss genetic testing with patients and had previously completed an online survey about genetic testing and life insurance. Interviews explored views and experiences about the moratorium, and regulation, in greater depth. Interview transcripts were analysed using thematic analysis. Two key themes emerged from views expressed by HPs during interviews (about matters reported to or observed by them): 1) benefits of the moratorium, and 2) concerns about the moratorium. While HPs reported that the moratorium reassures some consumers, concerns include industry self-regulation, uncertainty created by the temporary time period, and the inadequacy of the moratorium’s financial limits for patients’ financial needs. Although a minority of HPs felt the current industry self-regulated moratorium is an adequate solution to genetic discrimination, the vast majority (19/23) expressed concern with industry self-regulation and most felt government regulation is required to adequately protect consumers. HPs in Australia are concerned about the adequacy of the FSC moratorium with regards to consumer protections, and suggest government regulation is required.
The authors argue
Genetic testing can help identify individuals’ risk of developing future disease, including some cancers, and can effect positive health outcomes through prevention or early detection and treatment where available. In Australia, genetic test results can also lead to genetic discrimination in life insurance, including increased premiums or denial of cover on the basis of genetic test results. Fear of life insurance discrimination has been shown to deter individuals from undergoing predictive genetic testing and participating in genomic research.
Debate exists regarding whether the use of genetic test results by life insurers should be restricted. Some contend that the use of genetic information is a necessary and accepted principle of life insurance underwriting. Others, including many governments internationally, have accepted that curtailment of this is necessary for the protection of certain human rights, including those protected by Article 6 of the United Nations Universal Declaration on the Human Genome and Human Rights (unanimously adopted by 77 countries, including Australia), and Article 25 of the UN Convention on the Rights of Persons with Disabilities (which Australia has confirmed). Many countries, including the United Kingdom, Canada, and many European nations, have restricted or banned the use of genetic test results in life insurance underwriting. Private life insurance in those countries has not become unviable so far, suggesting that this debate is not determined, but rather an issue on which there are various points of view.
In Australia, under the Disability Discrimination Act 1992 (Cth), insurance companies can legally use an individual’s genetic status to discriminate against them in underwriting risk-rated insurance, if the company can justify its reasoning with actuarial or statistical data. This allowance does not apply to health insurance, which must be community-rated under separate legislation and is thus protected from genetic discrimination. Risk-rated insurance cover underwritten by life insurance companies in Australia includes life (death) cover, income protection, total and permanent disability, and critical illness/trauma cover.
Australian life insurance companies are self-regulated by the industry governing body, the Financial Services Council (FSC). The FSC self-regulates its own access to, and use of, genetic test results through mandatory practice standards, without government oversight. Despite previous efforts, the Australian government has not taken steps to limit insurance companies’ use of genetic test results. Following recommendations from a Parliamentary Joint Committee into the life insurance industry that this practice should be banned, however, the FSC introduced an industry-led, partial moratorium (ban) on use of genetic test results for life insurance products applied for after July 1 2019. The FSC moratorium is not a complete ban – protection is only offered for policies ≤ $500,000 for life (death) cover, ≤ $4000/month for income protection, ≤ $500,000 for total and permanent disability, and ≤ $200,000 for critical illness/trauma cover. The self-regulated moratorium will expire in 2024 unless renewed, and is not legally enforceable nor subject to government oversight.
In recognition of the importance of this issue, the Australian government has funded a three-year project to monitor the effectiveness of the FSC moratorium: the Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response (A-GLIMMER). The project is a national study, collecting views and evidence from multiple stakeholders (health professionals, consumers, researchers/research participants, and the financial services industry).
Health professionals (HPs), including clinical geneticists and genetic counsellors, play an essential role in assisting patients with making informed choices about genetic testing. HPs must, where relevant, discuss the implications of genetic testing on life insurance, as required by the Australian professional guidelines for genetic counselling. There is little literature regarding HPs’ views and experiences regarding the current FSC moratorium. Understanding these views is an important component for informing its future appropriateness. In this study, we interviewed Australian HPs who had previously responded to an online survey about the moratorium, to further explore their views and experiences, adopting a sequential explanatory mixed methods design. The research question addressed was “what are the views and experiences of Australian healthcare professionals regarding the genetics and insurance moratorium?”.
