A step forward, but still inadequate: Australian health professionals’ views on the genetics and life insurance moratorium

Tiller, Jane; Keogh, Louise; McInerney-Leo, Aideen; Belcher, Andrea; Barlow‐Stewart, Kristine; Boughtwood, Tiffany; Gleeson, Penny; Dowling, Grace; Prince, Anya; Bombard, Yvonne; Joly, Yann; Delatycki, Martin B.; Winship, Ingrid; Otlowski, Margaret; Lacaze, Paul

doi:10.1136/jmedgenet-2021-107989

Cited by 9 publications

(22 citation statements)

References 26 publications

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“…The first element of this study consisted of an online survey distributed to HPs in 2020, to gather evidence regarding their views and experiences of the moratorium. The results of that survey ( n = 166) have been published [ 22 ]. Here, we undertook follow-up interviews with survey participants who agreed to be contacted in order to expand on and explore the quantitative responses.…”

Section: Methodsmentioning

confidence: 99%

“…Recruitment for the online survey has been described previously [ 22 ]. Individuals were eligible for the survey if they were qualified HPs working in Australia who discuss genetic testing with patients.…”

Section: Methodsmentioning

confidence: 99%

“…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 [20], 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?…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2022

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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.

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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

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

et al. 2022

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“…In Australia, at the time of writing there is a partial moratorium (ban) limiting the use of genetic test results in life insurance underwriting. This moratorium is industry self-regulated and applies only to policies below certain financial limits (e.g., $500,000 of death cover) [ 24 ]. Some decreases in patients delaying/declining testing after the moratorium’s introduction has been reported [ 24 ].…”

Section: Discussionmentioning

confidence: 99%

“…This moratorium is industry self-regulated and applies only to policies below certain financial limits (e.g., $500,000 of death cover) [ 24 ]. Some decreases in patients delaying/declining testing after the moratorium’s introduction has been reported [ 24 ]. Currently, there are no specific insurance-related guidelines about the use of polygenic scores.…”

Section: Discussionmentioning

confidence: 99%

Motivations and Barriers to Participation in a Randomized Trial on Melanoma Genomic Risk: A Mixed-Methods Analysis

Mercado

Newson²,

Espinoza³

et al. 2022

JPM

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The evolution of polygenic scores for use in for disease prevention and control compels the development of guidelines to optimize their effectiveness and promote equitable use. Understanding the motivations and barriers to participation in genomics research can assist in drafting these standards. We investigated these in a community-based randomized controlled trial that examined the health behavioral impact of receiving personalized melanoma genomic risk information. We examined participant responses in a baseline questionnaire and conducted interviews post-trial participation. Motivations differed in two ways: (1) by gender, with those identifying as women placing greater importance on learning about their personal risk or familial risk, and how to reduce risk; and (2) by age in relation to learning about personal risk, and fear of developing melanoma. A barrier to participation was distrust in the handling of genomic data. Our findings provide new insights into the motivations for participating in genomics research and highlight the need to better target population subgroups including younger men, which will aid in tailoring recruitment for future genomic studies.

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Australian researcher's perspectives on the Australian industry‐led moratorium on genetic tests in life insurance

Yanes,

Blencoe,

Howard

et al. 2024

American J of Med Genetics Pt A

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Fear of insurance discrimination can inhibit genetic research participation. In 2019, an industry‐led partial moratorium on using genetic results in Australian life insurance underwriting was introduced. This mixed‐methods study used online surveys (n = 59 participants) and semi‐structured interviews (n = 22 participants) to capture researchers’ perceptions about the moratorium. 66% (n = 39/59) were aware of the moratorium before the survey. Of researchers returning genetic results, 56% (n = 22/39) reported that insurance implications were mentioned in consent forms, but a minority reported updating consent forms post‐moratorium (n = 13/39, 33%). Most researchers reported that concerns regarding life insurers utilizing research results inhibited recruitment (35/59, 59%), and few perceived that the moratorium positively influenced participation (n = 9/39, 23%). These findings were supported by qualitative findings which revealed that genetic discrimination concerns were a major issue for some individuals, though these concerns could be eclipsed by the promise of a diagnosis through research participation. The majority thought a regulatory solution should be permanent (n = 34/51, 67%), have financial limits of at least ≥1,000,000 AUD (37/51, 73%), and involve government oversight/legislation (n = 44/51, 86%). In an era where an increasing number of research studies involve genomics as a primary or secondary objective, it is crucial that we have regulatory solutions to address participants’ hesitation.

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A step forward, but still inadequate: Australian health professionals’ views on the genetics and life insurance moratorium

Cited by 9 publications

References 26 publications

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

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

Motivations and Barriers to Participation in a Randomized Trial on Melanoma Genomic Risk: A Mixed-Methods Analysis

Australian researcher's perspectives on the Australian industry‐led moratorium on genetic tests in life insurance

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