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Public Health Genomics

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Front. Public Health | doi: 10.3389/fpubh.2018.00333

Genetics, insurance and professional practice: Survey of the Australasian clinical genetics workforce

 Jane Tiller1*, Louise Keogh2,  Samantha Wake3, Martin Delatycki4, 5, 6,  Margaret F. Otlowski7 and  Paul Lacaze1
  • 1Department of Epidemiology and Preventive Medicine, Monash University, Australia
  • 2Melbourne School of Population and Global Health, Australia
  • 3The University of Melbourne, Australia
  • 4Victorian Clinical Genetics Services (VCGS), Australia
  • 5Murdoch Childrens Research Institute, Australia
  • 6Royal Children's Hospital, Australia
  • 7Centre for Law and Genetics, University of Tasmania, Australia

In Australia and New Zealand, by contrast with much of the developed world, insurance companies can use genetic test results to refuse cover or increase premiums for mutually-rated insurance products, including life, income protection and disability insurance. Genetics professionals regularly discuss insurance implications with clients and report the issue as a clinical challenge, yet no studies have examined clinical practices or opinions. This study surveyed genetic counsellors and clinical geneticists from Australia and New Zealand to i) investigate variability in professional practice across the Australasian clinical genetic workforce relating to the insurance implications of genetic testing, and ii) ascertain views regarding current regulation of the issue. There was considerable variability in training and clinical policies, especially around the communication of insurance implications. Almost half of participants reported receiving no training on the insurance implications of genetic testing, and almost 40% were unsure whether they could adequately advise clients. A number of deficits in professional knowledge and understanding of the issue were identified. Widespread concerns regarding regulation of this area were reported, with less than 10% of Australian participants considering current Australian regulations as adequate to protect clients from genetic discrimination. The findings from this study highlight scope for greater education, consistency and professional training on the issue of genetics and insurance in Australasia, and strong agreement about the need for regulatory reform.

Keywords: Insurance, life insurance, Genetics, Genetic discrimination, Genetic counselling, regulation, Australia

Received: 19 Aug 2018; Accepted: 31 Oct 2018.

Edited by:

Su Yon Jung, University of California, Los Angeles, United States

Reviewed by:

Eugenia M. Bastos, Independent researcher
Weijian Liu, EMD Serono (United States), United States  

Copyright: © 2018 Tiller, Keogh, Wake, Delatycki, Otlowski and Lacaze. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

* Correspondence: Miss. Jane Tiller, Department of Epidemiology and Preventive Medicine, Monash University, Melbourne, 3004, Victoria, Australia,