Introduction: Genetic discrimination (GD) in the context of life insurance is a perennial concern in Australia and internationally. To address such concerns in Australia, an industry self-regulated Moratorium on Genetic Tests in Life Insurance was introduced in 2019 to restrict life insurers from using genetic test results in underwriting for policies under certain limits. Financial advisers (FAs) are sometimes engaged by clients to provide financial advice and assist them to apply for life insurance. They are therefore well-placed to comment on GD and the operation of the Moratorium. Despite this, the financial advising sector in Australia has yet to be studied empirically with regards to GD and the Moratorium. This study aims to capture this perspective by reporting on interviews with the financial advising sector. Methods: Ten semi-structured qualitative interviews were conducted with FAs and key informants and were analysed using thematic analysis. Conclusion(s): Participants’ level of awareness and understanding of the Moratorium varied. Participants reported mixed views on the Moratorium’s effectiveness, how it operates in practice, and perceived industry compliance. Participants also provided reflections on Australia’s current approach to regulating GD, with most participants supporting the concept of industry self-regulation but identifying a need for this to be supplemented with external oversight and meaningful recourse mechanisms for consumers. Our results suggest that there is scope to increase FAs’ awareness of GD, and that further research, consultation, and policy consideration are required to identify an optimal regulatory response to GD in Australia.

There is an increasing availability of genetic testing in health care, providing invaluable diagnostic and predictive information [1]. Genetic tests are a useful source of information not only for health professionals and consumers but also for insurance underwriters, who can use predictive genetic test information to inform individual risk ratings and determine whether to offer cover, and, if so, the size of premiums or terms of the policy [2].

Genetic discrimination (GD) is defined as “the differential treatment of asymptomatic individuals or their relatives on the basis of their actual or presumed genetic characteristics” (p. 434) [3]. In Australia, incidents of GD have been documented [4‒7], but their prevalence is difficult to quantify because data on underwriting decisions are not publicly available [7]. Research shows that fear of insurance implications deters individuals from undertaking clinically relevant genetic testing and/or participating in research [8, 9]. Such apprehension may mean some individuals miss out on information that could prompt life-saving interventions for medically actionable conditions [5, 8‒15], and that reduced genetic research participation may limit Australia’s international research success [16].

While GD in the context of life insurance is, for some, a concern of international significance [3, 12, 17], others claim it is a necessary practice for actuarial fairness and industry sustainability [8‒10, 18]. Commentators argue that predictive genetic test results should be treated cautiously by insurers, given that they mostly provide probabilistic information about a person’s future health status and are not necessarily determinative [19], and interpretations can change with updated information as knowledge increases. Hence, misuse and overreliance on genetic test results may lead to insurance companies making conservative business decisions which fail to accurately determine risk [20].

Conversely, other commentators resist the notion of “genetic exceptionalism,” arguing that genetic information should not warrant special protection [21, 22]. These proponents argue that for mutualistic insurance schemes to function, risk classification in underwriting is necessary to differentiate, rather than discriminate [1, 23]. On this view, failure to disclose predictive genetic test results causes an asymmetry of information and adverse selection, whereby individuals’ premiums are not commensurate with their risk status [24]. In order for the insurance industry to compensate for such asymmetry and remain viable, insurers may impose higher premiums across all consumers and reduce their coverage [25]. As a result, lower or average-risk clients could be inclined to purchase less life insurance or be driven out of the insurance market completely due to high prices [26]. Perpetual information asymmetry has been argued to result in market failure [27]. However, there is no evidence, to our knowledge, that suggests life insurance industries in jurisdictions which have restricted or banned the use of genetic test results have been compromised [3, 28]. Previous modelling in Canada has suggested that in the medium term, restricting insurers’ access to genetic test results would have negligible impact on their bottom line [29, 30].

Regulation of Genetic Test Results by the Australian Life Insurance Industry

In Australia, private health insurance operates on a community-rated model (i.e., each customer is charged the same premiums). However, life insurance products (including lump sum death cover, total permanent disability cover, trauma/critical illness cover, and income protection/salary continuance/business expenses cover) are risk-rated, permitting differentiation of cover and premiums. This means unfavourable genetic results may result in denial of applications or the addition of premiums [24]. Such discrimination is lawful under the Disability Discrimination Act 1992 (Cth) which permits life insurers to discriminate (including through the use of genetic test results) provided they have actuarial or statistical data to justify their decisions [31].

In 2019, the Australian financial services peak body, the Financial Services Council (FSC), introduced a self-regulated “Moratorium on Genetic Tests in Life Insurance” (“Moratorium”) [32] which applies within set limits (see Table 1 for details) in response to concerns about GD raised in a Parliamentary Inquiry [16]. According to the Moratorium’s terms, if an individual’s total cover (as an aggregate of all existing policies) exceeds any of the limits, insurers may still ask for (and use) the person’s genetic test results. The Moratorium does not prohibit insurers from asking about family history (albeit limited to first-degree relatives) and diagnosed conditions in individuals with symptoms of disease (including those diagnosed directly or indirectly from a genetic test) (3.1) [32‒34]. The Moratorium was initially a temporary measure set to expire in 2024 [32], but has since been extended indefinitely [35].

Table 1.

Overview of the Moratorium’s terms and associated guidance

Cover limits Death/total permanent disability AUD 500,000 
Trauma/critical illness AUD 200,000 
Income protection, salary protection, or business expenses cover AUD 4,000 per month 
Prohibited behaviour Asking or encouraging applicants to take a genetic test as part of their application and underwriting process. 
Asking for (or using) a person’s genetic test results (irrespective of whether they were obtained in a clinical or research setting) if the cover they are applying for falls within the limits above. 
Requiring an applicant to disclose family health history other than first-degree relatives. 
Requiring an applicant to disclose genetic test results of first-degree blood relatives. 
Permitted behaviour Using favourable genetic testing results in underwriting (e.g., to show that a person is not carrying a genetic variant(s) associated with developing an illness that runs in their family), provided the applicant makes such information available. 
Taking into account any evidence-based preventative treatment, or adherence to evidence-based preventative measures that may reduce the probability of an applicant developing an illness. 
Asking applicants to disclose any diagnosis or condition, even if the diagnosis resulted directly or indirectly from a genetic test. 
Cover limits Death/total permanent disability AUD 500,000 
Trauma/critical illness AUD 200,000 
Income protection, salary protection, or business expenses cover AUD 4,000 per month 
Prohibited behaviour Asking or encouraging applicants to take a genetic test as part of their application and underwriting process. 
Asking for (or using) a person’s genetic test results (irrespective of whether they were obtained in a clinical or research setting) if the cover they are applying for falls within the limits above. 
Requiring an applicant to disclose family health history other than first-degree relatives. 
Requiring an applicant to disclose genetic test results of first-degree blood relatives. 
Permitted behaviour Using favourable genetic testing results in underwriting (e.g., to show that a person is not carrying a genetic variant(s) associated with developing an illness that runs in their family), provided the applicant makes such information available. 
Taking into account any evidence-based preventative treatment, or adherence to evidence-based preventative measures that may reduce the probability of an applicant developing an illness. 
Asking applicants to disclose any diagnosis or condition, even if the diagnosis resulted directly or indirectly from a genetic test. 

The FSC self-regulates its members’ use of genetic test results in underwriting [36]. This means that while the FSC expects its members to comply with the Moratorium, it is not a legally enforceable instrument [36]. The Moratorium requires insurers to record anonymous details of all genetic test results received during the underwriting process, and document whether genetic test results were requested [32], hence compliance is assessed primarily through insurers’ self-reporting. The FSC has not reported compliance issues to date. Indeed, in a press release in February 2022, the FSC claimed (based on the industry’s self-reported data) that of the 846 applications life insurers received for cover which included a genetic test in the 6 months to June 30, 2021, 0% of applicants below the Moratorium’s limits were influenced by an adverse genetic test result [37]. This would suggest, provided the self-reporting is accurate, that the industry is complying with the Moratorium and that people are able to get a base level of cover (i.e., up to the Moratorium’s limits) even if they have an adverse test result [37]. Notably, however, there are mixed views about whether self-regulation and self-reporting, in absence of external oversight, are robust enough to accurately report and identify potential breaches, particularly due to inherent conflicts of interest [16, 38]. Indeed, some commentators have claimed that the industry has previously underreported compliance breaches [39].

To understand how GD operates in Australia and ascertain the effectiveness of Australia’s current approach to regulating GD, empirical examination which captures insights from key stakeholders (e.g., consumers, health professionals, genetic researchers, and the financial industry) is required. To add to the evidence base, this article reports on the perspectives of the financial industry, specifically financial advisers (FAs), who unlike other financial industry stakeholders such as insurance companies [40‒42], have not yet been studied, to the authors’ knowledge, in relation to underwriting in the context of genetic tests and GD.

FAs and Life Insurance

Assistance from FAs is often sought by clients when applying for insurance [43]. The Australian financial advising industry has recently undergone significant changes. The 2017 Royal Commission into Misconduct in the Banking, Superannuation and Financial Services Industry (2017 Royal Commission) criticised the quality of financial advice [44] and spurred a raft of reforms, including more stringent educational requirements, new professional standards, and a code of ethics [45]. Moreover, the number of registered FAs has steadily declined, decreasing by 37.1% over 3 years to 16,671 in 2022 [46]. Despite this, many Australians continue to seek advice from FAs when applying for life insurance [43].

While FAs operate in a range of settings, our study focuses on FAs who operate independently of life insurance companies (see Fig. 1 for an overview of the financial advising process). Independent FAs commonly pre-assess a client’s case before assisting them with a formal application to a life insurance company, to identify any risk factors which may result in applications being declined, having exclusions applied, terms limited, or premiums increased. FAs may contact insurance companies directly, keeping the client’s identity anonymous, to ascertain the likely policy terms based on the client’s circumstances. This approach saves time and mitigates the risk of a denial of cover which could prejudice the client’s future applications.

Fig. 1.

Overview of steps in the financial advising process.

Fig. 1.

Overview of steps in the financial advising process.

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Given that some Australians engage a FA for advice and practical assistance when applying for life insurance, FAs would be aware, in many cases, of their client’s circumstances and the extent of coverage their clients are (or may be) offered. Consequently, this population is likely to be well-placed to comment on the extent to which GD manifests in underwriting and the impact of the Moratorium. Accordingly, we interviewed FAs and key informants to obtain their insights on the views on GD and life insurance, and the Moratorium. To our knowledge, this is the first study to conduct interviews with the financial advising sector about GD, unlike other financial industry stakeholders such as insurance companies [40‒42].

This qualitative study is part of a broader research project titled “Australian Genetics and Life Insurance Moratorium: Monitoring the Effectiveness and Response” (“A-GLIMMER”), that aims to monitor the Moratorium’s effectiveness [36, 47]. The A-GLIMMER project is collecting evidence from multiple stakeholders (including health professionals, consumers, researchers, and the financial services industry) to evaluate Australia’s current response to GD [36].

We used a phenomenological methodology, which was appropriate due to its focus on lived experiences and richness of data, rather than sample size [48]. Eligible participants included personnel currently working in the financial advising sector either as a FA or in an academic/research capacity (key informant). We adopted several recruitment methods to try to maximise sample size. Firstly, we advertised via professional finance organisations’ communication channels, social media, and the authors’ professional networks. Subsequently, we contacted selected superannuation companies offering life insurance requesting they advertise our study, in addition to contacting financial advising/planning academics directly via their publicly available contact details. Snowball sampling was used to increase the sample size.

C.M.H. conducted semi-structured interviews via phone or video conference (Zoom), using an interview guide (online supplement 1; for all online suppl. material, see https://doi.org/10.1159/000533532). The interview guide was designed by a subset of the authors (C.M.H., J.T., M.O., C.M., P.L., L.A.K.) to include broadly framed questions intended to ascertain information relevant to the research problem [49]. To ensure that the questions were framed appropriately, and that FAs would be able to answer the questions, the authors obtained input and feedback from a FA working in the industry during the design phase. The earlier questions featured in the interview guide examine financial planning advice in relation to life insurance to provide necessary context before turning to questions intended to gather specific detail about the use of genetic tests in life insurance, perspectives on the Moratorium, and hypothetical scenarios [49]. Probes were used to attempt to get participants to expand on their answers, where appropriate [49]. Interviews were recorded and transcribed verbatim by a professional transcription company. To protect participants’ confidentiality, transcripts were manually de-identified.

The data were analysed using thematic analysis [50], using NVivo Plus [51] to manage the data. CMH familiarised herself with the data by listening to the audio and reading each interview’s transcript. CMH then generated an initial set of codes which formed the basis of a preliminary coding framework to meaningfully categorise the data. The preliminary coding framework was revised in discussion with L.A.K. (who familiarised herself with a subset of the data) [50]. All transcripts were subsequently coded according to the finalised framework. Each code was analysed to generate sub-codes in order to summarise the full range of data in each code [50]. The summarised data and corresponding analysis were reviewed and approved by all authors and are reported in this manuscript. The study was approved by the University of Melbourne’s Human Ethics Advisory Group (Project ID: 2021-22635-23414-2).

Ten participants (8 FAs and 2 key informants) from four Australian states (New South Wales, Queensland, Victoria, and Western Australia) were interviewed between February and October 2022. Interviews lasted between 34 and 110 min (mean 61 min). Each participant was assigned a pseudonym.

General Experience of Financial Advising and Genetic Testing

To contextualise the relevance of genetic test results to financial advising, this section presents findings about the perceived incidence of GD in underwriting, before presenting findings about participants’ awareness of the Moratorium and approaches adopted when advising on genetic test results.

GD: A Rare Occurrence?

Issues relating to GD in the context of life insurance were perceived to occur rarely, with only a subset of participants identifying genetic test results as ever influencing underwriting. One participant suggested that in their experience, genetic test results were mostly used to benefit clients, by proving individuals were not at risk despite relevant family history.

As far as when [the use of] genetic test[s are] anything but a positive, I think it would be extremely rare.” (William).

Despite the rarity reported, multiple participants identified that FAs may not always be able to ascertain the impact (or potential impact) of genetic tests. Indeed, some participants suggested that clients with unfavourable genetic test results may not even proceed to formal underwriting because of a pre-assessment, and therefore the impact of genetic test results may not be realised.

“I just can’t think of all the clients who’ve had genetic tests declined or not declined. Of course, there’s that whole pre-assessment issue, like we don’t even put them up for cover if you know they’re going to be declined.”(Kerry).

Similarly, it was identified that because pre-assessment forms typically do not ask about genetic testing, FAs may not be aware if a client is declined on that basis.

“I don’t think I’ve even got on my pre-assessment form: have you had any genetic testing? So, I may not even know. Or I might know that they’ve got conditions that may cause an issue in underwriting, but I don’t understand that there’s a genetic component.”(Pauline).

Awareness of the Moratorium

Most participants had some awareness of the Moratorium, which they derived from industry circulars, professional organisations’ newsletters, continuing professional development training, and FA forums. Despite its relevance to their advice, most participants suggested that, particularly in the context of recent reforms, the Moratorium was rarely (if ever) emphasised by the industry.

“I did go to one training with an insurer who literally mentioned from a one-hour presentation, it would have been literally 30 seconds.”(Pauline).

“[I] probably [found out about the Moratorium in] some articles that I've read. But there's so much information overload.”(Kerry).

One participant reported only learning about the Moratorium when they had a client with an identified pathogenic genetic variant.

“I did a pre-assessment for one of my clients with the BRCA2 gene, so I hopped on [an online forum] and … asked if anyone knew about it … I had absolutely no idea the Moratorium existed … there were a lot of fellow advisers who didn’t know anything about it … I don’t know if you start looking into it only once you become exposed to it. But then we don’t always talk to each other and ask each other what’s going on. So, we go to the insurance companies, apply for a pre-assessment, they decline it, and we’re like, ‘OK, well I guess that’s it.’”(Angelica).

Participants identified a need to raise awareness among the broader community, with some suggesting clients may believe they are ineligible for cover because of their genetic test results and hence fail to apply.

“Even my client that got tested, she didn’t hop online and ask, ‘Hey, can I get life insurance?’ She just assumed, ‘OK, well that’s it,’ because it wasn’t public news … or even just a campaign going, …‘Don’t let not getting insurance put you off genetic testing.’”(Angelica).

FAs Approach to Advising Clients

Advising on Genetic Test Results. FAs varied in their approach to advising in relation to genetic test results. Some advisers would try to ascertain as much relevant information (including genetic information) from their client, in addition to seeking advice from insurers about possible policy terms, prior to assisting the client to put in a formal application.

“One of the questions that could have the red flag is: have you ever been denied an application for life insurance? And that could be for [any] reason whatsoever … An [adviser] may not even put the application form in until they're pretty sure it's going to get through, because otherwise you can be leaving your client worse off with having this record of denying claims.”(Deborah).

However, as this participant noted, such an approach was not uniform and often limited to skilled FAs. Some FAs would leave it up to underwriters to obtain such information, who they considered to be better placed.

“The good advisers, particularly in risk, will develop a rapport. But … I know many who have this blanket rule where they’ll basically say, I don’t even ask them about full-on medical stuff, because I leave it for the underwriters… [because they will] know what to ask, and I know that I'm not going to get all the information from people”.(Deborah).

This approach was identified as appropriate by some participants, given that FAs were perceived to lack the necessary expertise.

“Financial advisers are often uneducated and have no understanding about the medical consequences of having genetic testing or not having genetic testing…they should be telling [clients] to go and discuss this with their doctor.”(Scott).

Coaching Clients. Participants also varied in their approach to coaching clients before underwriting. Some FAs opted for a conservative approach, such as using tele-interviews (whereby, the insurance company, via telephone, directly asks the client health and lifestyle questions) to avoid the perception of inappropriate influence.

“Some insurance-only advisers are much more kind of gung-ho about advising people what to mention and what not to mention. But I’m very risk averse … which is why I like the clients to do the tele-interview … so there’s no way that I could be seen to have influenced the process about what they’re revealing and not revealing.”(Pauline).

Other financial advisers did coach clients, particularly emphasising the potential impacts of over-disclosing.

You try and coach a few of those sorts of things… [like this information] is relevant and this would be a similar type thing. [I tell my clients] “don’t lie but just understand where they’re trying to come to from the question”.(Luke).

Perspectives on Protection against GD and the Moratorium

Views on the Moratorium

Participants’ views on the Moratorium varied from positive to more critical. Some participants viewed the Moratorium as positive because they believed people should not be discriminated against for taking preventative measures.

“You shouldn’t be discriminated against because you are taking a preventative measure, right? … These people are doing their tests, they’re taking the precautions, they are knowledgeable [about] their own health and don’t have their head in the sand.”(Angelica).

“Yes, definitely a good thing … [If a person wants] to get insurance to protect themselves and their families, there’s a whole issue that they can’t get that because of a genetic test. … The thing about insurance is we’re supposed to all share the risk… like in the olden days, or when insurance first came about, everyone in a village paid a small amount and if one person’s house got burnt down, well everybody chipped in equally.”(Kerry).

Others were critical of the implications of protecting against GD and expressed concerns for the industry’s sustainability.

“I think it’s a good idea, but the flow [on from that is] everyone [needs] to make a dollar. So, I would think it may mean that all claims would all increase. It will probably mean that … premiums will go up for everyone ... If the insurance companies aren’t making money, then they won’t be there to provide insurance for everyone, so it’ll die a natural death.”(Luke).

“The arguments made for the genetic Moratorium, in my view, are fallacious. So, the argument is that we do not want people to avoid genetic testing, because of concerns about insurance. And therefore, insurers need to change their behaviour towards people who are getting genetic testing, so that they will continue to get genetic testing. Is that a fair? … The same arguments being made for all diseases, and for which we want people to engage in appropriate health-seeking behaviour to mitigate their risks and to manage their conditions well … I think the people who are advocating for [the Moratorium] believe that it’s compassionate, and that it has virtually no impact on insurers … my concern is that I can see it unfolding into a market collapse.” (Scott).

Some participants suggested the Moratorium was ultimately redundant and did not appreciably offer clients protection against GD because information about the client’s genetic condition would likely still be captured elsewhere (e.g., questions pertaining to family and/or medical history).

“I think it’s that redundancy of … are we still catching it elsewhere? It’s just a moot point because we’re running into the ‘What is your family history? Have any of your family members ever been diagnosed with this?’”(William).

Views on the Moratorium’s Limits

Adequacy of Limits. Some participants criticised the Moratorium’s limits (see Table 1), suggesting they were inadequate to protect most consumers, particularly for death/permanent disability and income protection cover.

“[The limits are] too low; the limits are miniscule.” (Pauline).

“I think given house prices … have gone up so much, 500 is better than nothing but it’s not really very much anymore in the capital cities. I think those limits should be increased. And AUD 4,000 a month income, that’s not very much, like disability support from [the Government is] around about 3,000 a month.”(Kerry).

Some participants, however, indicated that while the limits may be conservative, they could still provide some basic level of protection.

“Everyone wants to push any boundary ... I think people need to concentrate more on what they spend and what they make. I’ve got plenty of clients who live very comfortably on not a lot of money …. It’s not an ideal situation right, but you can control some of those things yourself – have a smaller house, downsize … there’s got to be a limit and I don’t think you can make too many exceptions.” (Luke).

“I think for the general population they’re very, very basic, but they’re potentially OK to keep you afloat. They’re certainly not going to put your family in a great position if [you need to claim] if something actually goes wrong. But in order to get a base amount of cover, I think it’s good.” (Cynthia).

Some participants identified products, albeit suboptimal, that could provide an applicant with a default level of cover even with an unfavourable genetic test result.

“There’s an employer superfund available, it’s a default level of cover, that can be a really good thing … it’s normally not as good a quality cover, but [something is] better than nothing. So, there’s a few of them around … there’s a fund at the moment that will give 600,000 worth of life and TPD and 10,000 grand worth of income protection cover. No questions asked … if [you claim for] a pre-existing condition in the first two years then they won’t pay up. Once you get past [those] two years and they know nothing’s happened, then you’re fully insured.” (Luke).

Application of Limits. Despite being set out in the Moratorium’s terms, participants’ understanding of how the Moratorium’s limits worked in practice varied, which may suggest inconsistent (and inaccurate) advice may be provided to clients. Some participants suggested that any increased premiums and exclusions would apply only to the amounts of cover that exceeded the set limits, and in the cases of full decline, applicants would be offered a basic level of cover (up to those limits).

“That is my understanding of how it would work, yeah, that they’re not allowed to apply those results up to the limit … they might even decline. So, my expectation would be that they would come back and say, well you’re carrying a risk for X, which is actually a decline, but we’re not allowed to decline so we’ll just offer you the AUD 500,000 and no more.”(Pauline).

Conversely, other participants understood that for applications above the limits, any exclusions or premiums would be applied to the full amount of cover.

“I believe the Moratorium applies or it doesn’t. So, under that limit they’re not allowed to use it, but over that limit they are allowed to use it for the full amount.” (William).

Compliance with the Moratorium

When asked about life insurance companies’ compliance with the Moratorium, notably one participant reported first-hand experience of insurance companies not complying with the terms, based on their pre-assessment enquiries with respect to a client who had an adverse genetic test result and was within the Moratorium’s limits.

“How is a full decline on trauma cover of AUD 180,000 complying with the Moratorium? And other than the BRCA2 gene, she only … on anxiety medication, so it’s a mental health exclusion, but other than those two things, there’s absolutely nothing wrong with her and she’s in perfect health.”(Angelica).

While some participants noted, given their lack of experience with the Moratorium, that they were unable to comment on compliance, multiple participants raised concerns about clients (who fall within the limits) inadvertently disclosing to insurers that they have had a genetic test. Some participants were concerned that in such cases, assessing compliance would be difficult, and it may be the case that such disclosures could be used inappropriately by underwriters.

“A policy provider will always do their own underwriting anyway … they’ll have that underwriting section who will either call or come around and do all that backgrounding …and you can just imagine in that amorphous getting to know your client conversation… Now, some [life insurers] might say… genetic testing is something that I can’t ask … or [I] can’t take any of that into account, I don’t want to record that. You’d hope that lots of them know those parameters. But you also don’t know what the client offers up to the underwriter … they’ve already [read the] disclaimer saying, if there’s anything you don’t disclose, then it will mean that your claim can be denied … unless the client knows [about it] completely, or if the underwriting person just says don’t [say] anything about genetic testing, it can come up. So, it’s tricky to monitor. (Deborah).

Participants similarly reported that most insurers do not provide comprehensive reasons for their decisions, making it difficult to determine why particular terms, exclusions, and/or premiums were applied.

“Everything feels like it’s very subjective to whatever the underwriter feels like on the day. Whether you get cover or you don’t. Whether you get loaded or whether you get excluded. You never really get a proper explanation …I think there’s a real risk in genetic testing that they just turn around and say no to everything.” (Cynthia).

Another participant expressed concerns about compliance when it came to claim time.

“I would say it would be very interesting to see how it would play out in court and the legal system. Because you could say certainly the insurance company can’t use it … but does that become an issue when someone’s looking at paying out a claim? Like I always say to clients, there’s one thing to get cover, but then it’s another thing to claim on the cover. And depending on what’s happened at the time of underwriting, and what happens in between the rule changes, is there going to be some kind of backwards looking side of things.” (Tina).

However, such cynicism was not universal, with some suggestions that life insurance companies were likely to comply.

“Despite what is believed about the insurers, they, in my experience, are extremely customer-oriented, to a fault. They want to do the right thing. And although there are a lot of noisy customers and complaining people … to me, a lot of those things are the exception rather than the rule. … The FSC, represents the life insurers, and so the FSC board signs off on a Moratorium. [This] means that the CEOs of the companies say that’s what you got to do, so they will do it.” (Scott).

Avenues for Recourse

Some participants identified complaint mechanisms (albeit limited) that are available to consumers with unfavourable underwriting outcomes. However, many participants were critical of their efficacy.

“There’s a[n] … ombudsmen style complaints place. And that’s most definitely where you would go if you tried to make a claim that was declined. But in terms of actually being declined cover in the first place, I don’t know if you can do much because it’s really up to them, whether to do business with you or not.”(Pauline).

Participants also identified the difficult evidentiary burden required for clients to prove non-compliance.

“If they can find another reason to say why they declined you, then how are you going to prove it’s because of [your genetic test results]?”(Pauline).

Best Way to Regulate

When asked about the best way to regulate for GD, some participants identified legal regulation as a possible solution.

I think it needs to be written in law, and people should be made more aware of that.” (Angelica).

Most participants, however, were more supportive of industry regulation rather than legal regulation.

“I think being anindustry-led moratorium or advocacy is more preferable than a legally led one … I guess the issue would be … if the insurance companies, and I’m being completely hypothetical, if there’s something that they’re trying to not pay out, would they go to that extreme to not pay out and use that kind of information and then get the legal profession involved, and that’s going to set a precedent for [what] may happen in the future.” (Tina).

“I think it should beindustry-led… we’ve got enough legislation that applies to everything that we do. [Legislation] would just add an extra layer of complexity, an extra layer of risk.” (Cynthia).

Some participants suggested that if regulation is left to the industry, it should be subject to external oversight.

“The FSC can do it as long as enough external people know what should be happening so that they can say, “No, that’s not right.” (Pauline).

Participants also identified the importance of involving multiple disciplines in regulation.

“It needs to have a multidisciplinary [approach] … for example, it needs to be from science, it needs to be from ethics. We need to have … health leaders as well as regulators, treasury.” (Deborah).

This study provides insight into the perspectives of the Australian financial advising sector on GD in the context of life insurance and the Moratorium, a perspective that has not yet been captured in the academic literature. Among our participants, there was considerable variation in: (a) awareness and knowledge of the Moratorium; (b) perspectives on GD and the moratorium’s effectiveness; and (c) opinions and views regarding the best approach to regulating GD. While most participants were supportive of the Moratorium as a potential mechanism to reduce GD, some participants raised concerns about the life insurance industry’s sustainability, consistent with arguments raised by proponents of permitting GD [1, 26, 27]. Similarly, some participants perceived the Moratorium to be ultimately redundant. While insurers are prohibited from asking for genetic test results directly, as has been described in the Canadian context, these prohibitions do not extend to broad questions relating to family and medical history [46]. This may provide insurers with a wealth of information about the person (including genetic information), opening up the possibility for GD [52].

This research shows, consistent with studies conducted with other stakeholder groups such as health professionals [15, 53], that the level of awareness of the Moratorium varies among FAs. While some participants claimed to have a good understanding of the Moratorium, others were less confident. The lack of awareness was also demonstrated by inconsistencies reported by participants in relation to the Moratorium’s terms, such as the application of its limits in practice. If FAs, who engage regularly with life insurance products, lack a clear understanding of these terms, this likely indicates a broader problem in understanding the Moratorium.

Participants reported varying comfort in discussing the implications of genetic test results with clients, with some hesitant to broach the topic at all. Previous research has suggested individuals may discuss these implications with other stakeholders, such as genetic health professionals [13, 54]. However, knowledge disparities have caused doubts about whether the genetics workforce can adequately inform their clients about insurance implications [13, 54]. Given that clients engage FAs to help manage their finances, it is important that FAs can advise on the impact of genetic test results on an individual’s ability to obtain insurance, rather than assume clients will get such information elsewhere. To help enhance FAs’ knowledge, specific guidelines on advising on genetic test results and detailed underwriting guides could be developed [24], in addition to dedicated education on this issue embedded within FAs’ mandatory continuing professional development. Such targeted efforts may mitigate concerns about FAs’ level of expertise and their tendency to provide unqualified advice, as emphasised by the 2017 Royal Commission [44].

Relatedly, participants reflected on the community’s poor awareness of the Moratorium, identifying hesitance in applying for life insurance due to presumed ineligibility. While there is a consumer fact sheet on the Moratorium produced by the FSC and the national genetic education forum [34], it may not reach all consumers. Hence, as identified by our participants, targeted efforts to raise awareness among the community may be warranted.

While the Moratorium provides a baseline level of insurance coverage which was not previously possible for individuals with risk-indicating genetic test results [53], many participants identified that current limits are inadequate to protect most people, consistent with the views expressed by Australian health professionals in previous studies [15, 53]. As the current limits were set in 2019, revision of its limits is justified considering the steady increase in the cost of living [55]. Indeed, the average Australian mortgage as of September 2022 was over AUD 588K, with Victoria and New South Wales averaging over AUD 599K and AUD 743K, respectively [56]. This would suggest the current limits are particularly low.

Few participants were able to provide insight into insurers’ compliance with the Moratorium. However, one participant’s direct experience of being informed during the pre-assessment stage that their client would not be offered cover despite the applicant being within the Moratorium’s limits is of concern. Such a finding counters the FSC’s confidence that all life insurance companies are complying with the Moratorium, as stated in their own review of data [37]. One possible reason for the discrepancy is that the data collected from the FSC is based on life insurance applications and does not capture pre-assessment screening. As emphasised by some participants, pre-assessment screening is common. If FAs feel clients are unlikely to be offered a policy based on pre-assessment advice, they will not advise their client to submit a formal application or may encourage them to apply for a suboptimal product which does not subject the client to the same scrutiny.

Unlike the regulatory preferences of other stakeholder groups, such as health professionals and researchers in Australia [15, 53], many participants did not perceive legislation and/or government regulation to be the best form of regulation for GD. The support for self-regulation was surprising among participants, given that many were openly critical of the industry. However, such results should be interpreted cautiously. While FAs are not directly part of the life insurance industry, they still likely have interest in its viability.

Importantly, however, even participants supporting self-regulation identified the need for external oversight, which currently does not exist. Self-regulation of the use of genetic test results has been identified as belonging to the “extreme laissez-faire end of the regulatory spectrum” [38]. Indeed, the financial industry’s lack of transparency and robust processes to ensure compliance with industry codes have been repeatedly criticised [12, 24, 38], including by the 2017 Royal Commission which identified conflicts of interest and industry failures to monitor compliance and adequately enforce obligations throughout the industry in general [44]. External oversight, coupled with effective mechanisms for enforcement, has been well-supported by commentators as a potential mechanism to increase transparency in the underwriting process and to avoid conflicts of interest [24].

Significantly, involvement of external regulatory actors, such as government, should extend beyond prescribing appropriate conduct and compliance monitoring to also focus on remedying non-compliance. Product disclosure statements on individual policies detail how a client can make a formal complaint to the life insurance company [34]. Similarly, applicants can seek recourse from the Australian Financial Complaints Authority, Australian Human Rights Commission, and the legal profession [34]. Despite such avenues being available to applicants, they are complex, and many participants questioned their efficacy. This is consistent with previous research that shows only a minority of applicants who experience difficulties with genetics test results appeal insurers’ decisions [7, 57]. The identified difficulties relating to discharging the burden of proof and the reluctance of insurers to provide detailed reasons [58] were also perceived as barriers by participants.

While specific recommendations regarding optimal regulation are beyond the ambit of this paper, relying on a combination of regulatory tools (such as law, policy, industry codes, and education) could be most appropriate to address this issue. Irrespective of the regulatory approach taken, this space should be closely monitored, supplemented with affordable avenues of recourse, and informed by further research, consultation with key stakeholders, and further policy consideration.

Strengths and Limitations

This study’s key strength was its interdisciplinary approach to understanding the issues associated with GD regulation among an important stakeholder group not that had previously been studied empirically in relation to this topic. Despite considerable recruitment attempts, our sample size was ultimately small. However, small sample sizes are consistent with a phenomenological approach, which prioritises the richness of data over quantity [48]. Another limitation is the participants’ lack of direct experience advising on genetic test results in practice, which could stem from our small sample or the fact that genetic testing in Australia is still fairly limited. Further, some participants drew on their broader industry experience and general views of the life insurance industry personnel, rather than providing specific examples.

This study highlights the need for further research with this cohort (including beyond the genomics space). Moreover, future research with other stakeholders in the financial industry, such as underwriters, could provide further insights given that they are likely to have different perspectives on how genetic tests influence underwriting.

Our study has identified considerable variability in the awareness, knowledge, and opinions of the Moratorium among the financial advising sector, with mixed views regarding its effectiveness, operation in practice, and industry compliance. Although, this research is unable to evaluate the effectiveness of the Moratorium, or the degree to which it is complied with, current approaches to regulation are largely perceived to be suboptimal. Despite support for self-regulation among participants, they identified a need for this to be supplemented with external oversight, more effective enforcement mechanisms, greater transparency around decisions, and efficacious recourse mechanisms.

Moreover, consideration should be given to current monitoring approaches, which may not be capturing all potential breaches, particularly in the pre-filtering phase. Hence, regulatory approaches that can identify and remedy any potential breach of the Moratorium (not just breaches in the formal application process) are required. Such an approach may involve a combination of regulatory tools but should be informed by research, consultation, and policy consideration.

Targeted education, resources, and awareness-raising initiatives should supplement any regulatory approach. Such initiatives should be aimed at both FAs to minimise the possibility of inconsistent (and inaccurate) advice and the wider community to ensure they are aware of their protections under the Moratorium and mitigate fears surrounding obtaining genetic tests or applying for life insurance.

The authors thank Anne Taylor for her insight into the financial advising industry which helped inform the study design.

This research was conducted ethically in accordance with the World Medical Association Declaration of Helsinki. This study was reviewed and approved by the University of Melbourne’s Human Ethics Advisory Group (Project ID: 2021-22635-23414-2). Written informed consent was obtained from participants to participate in the study.

The authors have no conflicts of interest to declare.

The project is supported by a grant from the Australian Government’s Medical Research Future Fund (MRFF), ref 76721.

Study design was done by C.M.H., J.T., M.O., P.G., C.M., P.L., A.M.-L., and L.A.K. Interviews were conducted by C.M.H.. Data analysis was done by C.M.H. and L.A.K.. Manuscript was drafted by C.M.H., J.T., and L.A.K. Manuscript was edited by C.M.H., J.T., M.O., P.G., C.M., K.B.-S., P.L., A.M.-L., and L.A.K. All authors approved the final version of the manuscript.

Additional Information

Keogh and McInerney-Leo are joint senior authors.

All relevant data for this manuscript have been included in the form of participant quotes. Further enquiries can be directed to the corresponding author.

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