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

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

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3 Citations (Scopus)


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.

Original languageEnglish
Pages (from-to)1262-1268
Number of pages7
JournalEuropean Journal of Human Genetics
Issue number11
Publication statusPublished - Nov 2022

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