Health professionals' views and experiences of the Australian moratorium on genetic testing and life insurance: A qualitative study.
Journal
European journal of human genetics : EJHG
ISSN: 1476-5438
Titre abrégé: Eur J Hum Genet
Pays: England
ID NLM: 9302235
Informations de publication
Date de publication:
11 2022
11 2022
Historique:
received:
02
03
2022
accepted:
04
07
2022
revised:
22
06
2022
pubmed:
29
7
2022
medline:
4
11
2022
entrez:
28
7
2022
Statut:
ppublish
Résumé
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.
Identifiants
pubmed: 35902697
doi: 10.1038/s41431-022-01150-6
pii: 10.1038/s41431-022-01150-6
pmc: PMC9626480
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
1262-1268Informations de copyright
© 2022. The Author(s).
Références
Otlowski M, Tiller J, Barlow-Stewart K, Lacaze P. Genetic testing and insurance in Australia. Aust J Gen Pract. 2019;48:96–9.
doi: 10.31128/AJGP-10-18-4722
pubmed: 31256467
Tiller J, Otlowski M, Lacaze P. Should Australia ban the use of genetic test results in life insurance? Front public health. 2017;5:330.
doi: 10.3389/fpubh.2017.00330
pubmed: 29322039
pmcid: 5733354
Keogh LA, Niven H, Rutstein A, Flander L, Gaff C, Jenkins M. Choosing not to undergo predictive genetic testing for hereditary colorectal cancer syndromes: expanding our understanding of decliners and declining. J Behav Med. 2017;40:583–94.
doi: 10.1007/s10865-016-9820-0
pubmed: 28197815
pmcid: 6057776
Smit AK, Espinoza D, Newson AJ, Morton RL, Fenton G, Freeman L, et al. A pilot randomized controlled trial of the feasibility, acceptability, and impact of giving information on personalized genomic risk of melanoma to the public. Cancer Epidemiology and Prevention. Biomarkers 2017;26:212–21.
Pugh J. Genetic information, insurance and a pluralistic approach to justice. J Med Ethics. 2021;47:473–9.
doi: 10.1136/medethics-2020-106913
Otlowski M, Taylor S, Bombard Y. Genetic discrimination: International perspectives. Annu Rev Genomics Hum Genet. 2012;13:433–54.
doi: 10.1146/annurev-genom-090711-163800
pubmed: 22607273
The Geneva Association. Genetics and Life Insurance: A View Into the Microscope of Regulation. Zurich, Switzerland; 2017.
Tiller J, Delatycki MB. Genetic discrimination in life insurance: a human rights issue. J. Medical Ethics. 2021:medethics-2021-107645.
Joly Y, Huerne K, Arych M, Bombard Y, De Paor A, Dove ES, et al. The Genetic Discrimination Observatory: Confronting novel issues in genetic discrimination. Trends Genet. 2021;37:951–4.
doi: 10.1016/j.tig.2021.08.004
pubmed: 34503867
Australian Government. Disability Discrimination Act 1992 [Available from: https://www.legislation.gov.au/Details/C2016C00763 .
Australian Government. Private Health Insurance Act Canberra 2007 [Available from: https://www.legislation.gov.au/Details/C2021C00291 .
Newson AJ, Tiller J, Keogh LA, Otlowski M, Lacaze P. Genetics and insurance in Australia: concerns around a self-regulated industry. Public Health Genomics. 2017;20:247–56.
doi: 10.1159/000481450
pubmed: 29069661
Commonwealth of Australia. Life Insurance Industry Canberra 2018 [Available from: https://www.aph.gov.au/Parliamentary_Business/Committees/Joint/Corporations_and_Financial_Services/LifeInsurance/Report .
Australian Law Reform Commission. Essentially Yours: The Protection of Human Genetic Information in Australia Sydney: Commonwealth of Australia 2003.
Financial Services Council. FSC Standard No. 11: Moratorium on Genetic Tests in Life Insurance 2019.
Tiller J, Winship I, Otlowski MF, Lacaze PA. Monitoring the genetic testing and life insurance moratorium in Australia: A national research project. Med J Aust. 2021;214:157–9.e1.
doi: 10.5694/mja2.50922
pubmed: 33550592
Tiller J, McInerney-Leo A, Belcher A, Boughtwood T, Gleeson P, Delatycki M, et al. Study protocol: The Australian genetics and life insurance moratorium—monitoring the effectiveness and response (A-GLIMMER) project. BMC Med Ethics. 2021;22:1–14.
doi: 10.1186/s12910-021-00634-2
Tiller J, Keogh L, Wake S, Delatycki M, Otlowski M, Lacaze P. Genetics, insurance and professional practice: survey of the Australasian clinical genetics workforce. Front public health. 2018;6:333.
doi: 10.3389/fpubh.2018.00333
pubmed: 30542646
pmcid: 6277853
Human Genetics Society of Austalasia. Process of Genetic Counselling. Sydney 2008.
Tiller JM, Keogh LA, McInerney-Leo AM, Belcher A, Barlow-Stewart K, Boughtwood T, et al. A step forward, but still inadequate: Australian health professionals’ views on the genetics and life insurance moratorium. J. Medical Genet. 2021:jmedgenet-2021-107989.
Tiller J, McInerney-Leo A, Belcher A, Boughtwood T, Gleeson P, Delatycki M, et al. Study protocol: the Australian genetics and life insurance moratorium-monitoring the effectiveness and response (A-GLIMMER) project. BMC Med Ethics. 2021;22:63.
doi: 10.1186/s12910-021-00634-2
pubmed: 34020638
pmcid: 8138092
Tiller J, Keogh L, McInerney-Leo A, Belcher A, Barlow-Stewart K, Boughtwood T, et al. A step forward, but still inadequate: Australian health professionals’ views on the genetics and life insurance moratorium. Brit. Med. J. 2021;59:817–26.
Miles MB, Huberman AM Qualitative data analysis: An expanded sourcebook: Sage; 1994.
Braun V, Clarke V. Using thematic analysis in psychology. Qualitative Res Psychol. 2006;3:77–101.
doi: 10.1191/1478088706qp063oa
Braun V, Clarke V, Hayfield N, Terry G Thematic Analysis. In: Liamputtong P. editor. Handbook of Research Methods in Health Social Sciences. Singapore: Springer Singapore; 2019. 843-60.
Skirton H, Cordier C, Ingvoldstad C, Taris N, Benjamin C. The role of the genetic counsellor: a systematic review of research evidence. Eur J Hum Genet. 2015;23:452–8.
doi: 10.1038/ejhg.2014.116
pubmed: 24916644
Burgess MM. Beyond consent: ethical and social issues in genetic testing. Nat Rev Genet. 2001;2:147–51.
doi: 10.1038/35052579
pubmed: 11253055
Newson AJ, Ayres S, Boyle J, Gabbett MT, Nisselle A. Human genetics Society of Australasia Position Statement: genetic testing and personal insurance products in Australia. Twin Res Hum Genet. 2018;21:533–7.
doi: 10.1017/thg.2018.60
pubmed: 30458892
pmcid: 6390382
Owner-occupier lending rose in December [press release]. 2022.
FSC ANNOUNCES MORATORIUM ON GENETIC TESTS FOR LIFE INSURANCE TO START IN JULY 2019 [press release]. 30 October 2018.
Hayne K. Final Report - Royal Commission into Misconduct in the Banking, Superannuation and Financial Services Industry: Canberra; 2019 [Available from: https://www.royalcommission.gov.au/royal-commission-misconduct-banking-superannuation-and-financial-services-industry .
Vukcevic D, Chen J, editors. Advances in genetics and their impact on life insurance. Institute of Actuaries of Australia: Financial Services Forum; 2018.
Office of the Privacy Commissioner of Canada. Genetic Information, the Life and Health Insurance Industry and the Protection of Personal Information: Framing the Debate 2012 [Available from: https://www.priv.gc.ca/en/opc-actions-and-decisions/research/explore-privacy-research/2012/gi_intro/ .
Hoy M, Durnin M. The Potential Economic Impact of a Ban on the Use of Genetic Information for Life and Health Insurance. Office of the Privacy Commissioner of Canada 2012.
Macdonald A. The actuarial relevance of genetic information in the life and health insurance context. Ottawa: Office of the Privacy Commissioner; 2011.
Office of the Privacy Commissioner of Canada. Statement on the use of genetic test results by life and health insurance companies. 2014.
Tiller J, Morris S, Rice T, Barter K, Riaz M, Keogh L, et al. Genetic discrimination by Australian insurance companies: a survey of consumer experiences. Eur J Hum Genet. 2020;28:108–13.
doi: 10.1038/s41431-019-0426-1
pubmed: 31281182