Laws are needed to protect Australians from life insurance discrimination based on genetic tests that identify increased risk of certain medical conditions, a Federal Government-funded report has found.
Led by Monash University experts, in collaboration with the Universities of Melbourne, Sydney, Queensland, Tasmania, Deakin University and other clinical and consumer partners, the report also found an insurance industry moratorium aimed at preventing this discrimination was inadequate.
- Key stakeholders (health professionals, consumers and researchers) are concerned about the life insurance industry’s self-regulation and absence of Australian Government oversight of the FSC Moratorium, and express a low level of confidence in its effectiveness
- There are instances of non-compliance, including where insurance companies have asked insurance applicants about genetic testing, contrary to FSC Moratorium terms
- There is a lack of effective mechanisms to enforce the moratorium or seek redress
- Stakeholders are concerned about the uncertainty inherent in the moratorium’s industry-led nature, and the potential for to life insurers to use genetic test results in the future
- Many genomic researchers reported that the potential use of genomic test results by insurers was a barrier to the recruitment of research participants
- Amend the Disability Discrimination Act 1992 (Cth) to prohibit insurers from using genetic or genomic test results to discriminate between applicants for risk-rated insurance, and consider amendments to the regulation of financial services to ensure insurers are subject to a positive duty to not discriminate.
- Allocate responsibility and appropriate resources to the Australian Human Rights Commission to enforce, promote, educate and support individuals and all relevant stakeholders to understand and meet the Act’s new legal obligations.
Tiffany Boughtwood, Managing Director of Australian Genomics, said the changes recommended in the report were well overdue.
“The issue of genetic discrimination has stifled clinical and research genomic uptake for years. The report makes a clear case for urgent intervention by the Australian Government, to protect consumers and the future of genomic medicine and research, as we’re on the brink of realising population-scale genomic testing in Australia.”
Access the report here
Associate Professor Paul Lacaze, Principal Investigator, Monash University
Dr Jane Tiller, Project lead, Monash University
Professor Margaret Otlowski, University of Tasmania
Tiffany Boughtwood, Australian Genomics
Dr Aideen McInerney-Leo, The University of Queensland
Professor Louise Keogh, University of Melbourne
Dr Penny Gleeson, Deakin University
Professor Martin Delatycki, Victorian Clinical Genetics Services
Professor Ingrid Winship, Melbourne Health
Associate Professor Kris Barlow-Stewart, University of Sydney
Dr Kristen Nowak, WA Department of Health
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