Health professionals’ views and experiences of the Australian moratorium on genetic testing and life insurance: A qualitative study

Our study provides an in-depth assessment of Australian HPs’ views and experiences regarding the current FSC moratorium on genetic testing and life insurance.

Interviews with 23 of the 166 previous participants of our published online survey [22], allowed us to obtain a more in-depth understanding of HPs’ views and experiences. Capturing these views and experiences is an important part of adequately informing future policy. The findings emerged within two major themes – HPs’ views on the benefits of the moratorium, and their concerns. Although some perceived benefits of the current moratorium were articulated by HPs, the major finding of our study was the consistent concerns raised, especially regarding the temporary nature of the moratorium (creating uncertainty for patients and HPs), the financial limits – which in the assessment of HPs are too low – and the issues with self-regulation by the insurance industry. The majority of interviewed HPs felt that the best solution to genetic discrimination in life insurance in Australia is government regulation or legislation.

While HPs generally consider that the moratorium is an important first step in reducing genetic discrimination in life insurance, most HPs expressed continuing concerns about the temporary nature of the moratorium, its financial limits and industry self-regulation. These concerns mirror those expressed by HPs in the previous online survey [22], where> 90% of HPs expressed views that government regulation and legislation regarding the use of genetic test results in underwriting are required. In our qualitative follow-up interviews, Australian HPs again frequently highlighted the need for more stringent regulation, both to reassure patients and to ensure compliance by insurance companies.

Temporary nature of the moratorium

Many HPs expressed discomfort with their inability to reassure patients due to the temporary nature of the moratorium. Despite a recommendation from the Parliamentary Joint Committee (PJC) in 2018 that any ban should apply indefinitely to genetic tests taken before the moratorium is lifted, to ensure certainty for consumers [13], this protection was not incorporated into the FSC moratorium. As anticipated by the Parliamentary Joint Committee, this uncertainty is now impacting patients and their HPs’ ability to provide them with adequate information. The temporary nature leaves HPs unsure of how the moratorium will be applied in the future, therefore increasing the complexity of the insurance and genetic testing conversations they have with patients. Furthermore, HPs cannot reassure patients that they will remain protected in the future, creating uncertainty for both patients and HPs.

HPs who are involved in organising genetic testing must provide patients with information regarding the medical and familial implications of a genetic condition, while working collaboratively to plan the next healthcare steps [26]. This role includes helping patients decide whether to have genetic testing. Obtaining informed consent for genetic testing requires HPs to provide information regarding the risks and benefits of undergoing such a test, which includes a discussion around insurance implications [27]. More specifically, in Australia the professional guidelines for genetic counsellors (who comprised ~ 60% of the online survey participants and 60% of our interview participants) require a discussion of the insurance implications to be included in consultations where relevant [28].

Our interview data demonstrates that many Australian HPs are now unsure how to have conversations about genetic testing and life insurance with patients, given the uncertainty around the future of the moratorium, and the possible future insurance implications of having genetic testing at this time. Given the possibility that the moratorium may not be continued beyond 2024, it is indeed impossible for HPs or any person to provide reliable or guaranteed information about the future insurance risks of genetic testing.

Financial limits

Pre-moratorium, Australian life insurance companies could ask applicants about genetic test results regardless of the amount of cover being applied for. Under the partial current moratorium, patients can apply for life insurance policies up to $ 500,000 without disclosing genetic test results [16]. As indicated by some of the interviewed HPs, this has allowed patients access to a baseline level of insurance cover which was not previously possible. However, the majority of HPs indicated that a proportion of their patients perceived the current financial limits as a significant restriction, with some patients finding the limits too low to adequately cover their financial needs. According to the Australian Bureau of Statistics, as at December 2021 the average loan size for owner-occupier dwellings was $ 602,000 [29].

Concerns with the moratorium’s financial limits were similarly reflected in our previously published survey, where almost half of the responding HPs made comments in the optional comments section regarding the moratorium’s financial limits being too low [22]. These concerns were echoed in the qualitative HP interviews, highlighting HPs’ widespread concerns that the moratorium’s financial limits are inadequate to protect patients. Despite the FSC’s public statement announcing the moratorium that “the insurance cover limits compare favourably with other countries” [30]analysis shows that countries which have such financial limits, let alone still allow the use of genetic data in life insurance underwriting, are in the minority [7].

Concerns regarding self-regulation

When exploring HPs ‘views on the moratorium’s regulation, a majority of participants voiced the need for life insurers’ use of genetic test results to be regulated by government. This result was consistent with our previous online survey, in which 95% (n = 166) felt that government oversight of the moratorium is required [22]. In both analyzes, we observed strong dissatisfaction with self-regulation by the insurance industry, paired with HP distrust in insurance companies’ compliance with the moratorium terms. While a minority of HPs considered that the self-regulated nature of the moratorium is an adequate solution to address genetic discrimination, the majority felt that government regulation is needed to ensure compliance by insurance companies, and to provide a long-term regulatory solution.

Self-regulation in the Australian financial services industry has been criticized repeatedly in recent years, including for lack of transparency and compliance without external regulation [12, 13]. In 2019, an Australian Royal Commission was conducted to assess the misconduct in the banking, superannuation and the financial services industries. The findings reflected various issues that are inherent with industry self-regulation, including conflicts of interest and the industry’s failure to monitor and enforce compliance with their codes [31].

For some HPs, the solution to the issue of non-compliance by the insurance industry is to move from self-regulation to government regulation. The introduction of legislation was expressed by many HPs as a necessary intervention to ensure compliance with regulations, and provide consequences for non-compliance. Our findings suggest that the majority of Australian HPs who discuss genetic testing with patients perceive industry self-regulation of the moratorium to be inadequate, and consider government regulation necessary.

Discussions about regulation in this area sometimes raise queries about consequences of restricting insurers’ access to genetic information. Some insurers and authors have raised concerns that the restriction on the use of genetic test results by insurers may lead to “adverse selection”, whereby the purchase of insurance by individuals with genetic predisposition to disease could lead to unsustainability of the insurance sector [32]. This issue has been raised internationally, including recently when the Canadian regulation on this issue was being considered. The Canadian Privacy Commissioner commissioned several actuarial experts to undertake modeling to assess the impact of a ban on using genetic test results in life insurance underwriting [33]. Each of these experts concluded that a ban would have negligible market impact at the time [34, 35]and were relied on by the Privacy Commissioner in assessing the appropriateness of regulation [36]. Canada eventually passed the Genetic Non-Discrimination Actin 2017, which bans the use of genetic test results in the provision of any goods or services (including insurance), with criminal penalties. This issue was also raised by the Australian life insurance industry in the recent Australian Parliamentary Joint Committee inquiry [13]. The Committee commented in its report that, “the committee notes the reasoning underlying the insurance industry’s need for genetic information. However, fears that adverse selection as a consequence of consumers not having to disclose predictive genetic testing results would make the life insurance market unsustainable may be overstated. In addition, the Canadian Office of the Privacy Commissioner found that the sustainability of the Canadian insurance industry is not likely to be affected at this time by a ban on the use of genetic information. Life insurers did not provide strong evidence to the contrary… Though the committee considers the fears overstated, the committee acknowledges adverse selection as a phenomenon in insurance. The committee’s primary concern in that regard is the potential for higher costs for consumers if information asymmetry between insurers and insureds causes insurers to seek to put up premiums to compensate. However, on balance, the committee believes there is presently greater benefit to consumers in preventing a duty of disclosure from arising in respect of predictive genetic tests for the reasons referred to above “.

Limitations of this study include the relatively small number of interviewed participants, and the potential for self-selection bias that may have influenced participation (eg HPs who volunteered to participate may be more likely to be engaged and have strong views about the topic, compared to other HPs). Nonetheless, we interviewed all HPs who consented to an interview, and continued interviewing participants until after data saturation was reached, to capture as many viewpoints as possible. A further limitation of our study is the secondary nature of reports by HPs about patient views and experiences. Some of our findings are therefore limited to HPs’ understanding and experience of patient views, rather than the collection of direct evidence. Past research by this group has demonstrated significant consumer concerns regarding the use of genetic test results by consumers existed before the implementation of the moratorium [37]. Further studies have been designed to gather updated views from Australian consumers and patients directly about this issue [17] and will be reported separately.

Strengths of the study include the sequential, explanatory mixed method design, which allows for both quantitative analysis of survey data (previously published) and in-depth exploration of the previous survey responses to obtain a more complete picture of HPs’ views and opinions.

In conclusion, our study demonstrates that although Australian HPs consider the FSC moratorium to be a positive step that provides benefits for some patients, ultimately the majority of HPs remain concerned about the overall adequacy of the current moratorium as a long-term regulatory solution. Major concerns raised with the moratorium include its industry self-regulation; low financial limits; and temporary nature, resulting in uncertainty of future applicability. Most HPs consider that government regulation and intervention is required to adequately protect Australian consumers long-term. The findings of this study indicate the need for a more stable, independent and long-term policy solution for the regulation of genetic testing and life insurance in Australia.

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