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


Dowling, G and Tiller, J and McInerney-Leo, A and Belcher, A and Haining, C and Barlow-Stewart, K and Boughtwood, T and Gleeson, P and Delatycki, MB and Winship, I and Otlowski, M and Jacobs, C and Keogh, L and Lacaze, P, Health professionals' views and experiences of the Australian moratorium on genetic testing and life insurance: a qualitative study, European Journal of Human Genetics, 30 pp. 1262-1268. ISSN 1018-4813 (2022) [Refereed Article]

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DOI: doi:10.1038/s41431-022-01150-6


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.

Item Details

Item Type:Refereed Article
Keywords:genetic discrimination, life insurance, genetic testing, moratorium,
Research Division:Law and Legal Studies
Research Group:Law in context
Research Field:Medical and health law
Objective Division:Law, Politics and Community Services
Objective Group:Justice and the law
Objective Field:Law reform
UTAS Author:Otlowski, M (Professor Margaret Otlowski)
ID Code:154761
Year Published:2022
Web of Science® Times Cited:1
Deposited By:Law
Deposited On:2023-01-04
Last Modified:2023-01-04

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