Should Australia Ban the Use of Genetic Test Results in Life Insurance?

Abstract

Under current Australian regulation, life insurance companies can require applicants to disclose all genetic test results, including results from research or direct-to-consumer tests. Life insurers can then use this genetic information in underwriting and policy decisions for mutually rated products, including life, permanent disability, and total income protection insurance. Over the past decade, many countries have implemented moratoria or legislative bans on the use of genetic information by life insurers. The Australian government, by contrast, has not reviewed regulation since 2005 when it failed to ensure implementation of recommendations made by the Australian Law Reform Commission. In that time, the Australian life insurance industry has been left to self-regulate its use of genetic information. As a result, insurance fears in Australia now are leading to deterred uptake of genetic testing by at-risk individuals and deterred participation in medical research, both of which have been documented. As the potential for genomic medicine grows, public trust and engagement are critical for successful implementation. Concerns around life insurance may become a barrier to the development of genomic health care, research, and public health initiatives in Australia, and the issue should be publicly addressed. We argue a moratorium on the use of genetic information by life insurers should be enacted while appropriate longer term policy is determined and implemented.

Genetics, Insurance and Professional Practice: Survey of the Australasian Clinical Genetics Workforce

“…There was no clear consensus among participants regarding what type of regulation should be implemented, though more participants agreed with the implementation of legislation than a moratorium (ban) on the use of genetic test results by insurers. It is argued elsewhere that a ban should be implemented (with the exception of mutation-negative results used to counter a family history of disease), along with longer term regulatory reform ( 19 ).…”

Genetic testing and insurance in Australia

“…12 The stance currently taken in Australia is in marked contrast to the position taken by many comparable overseas jurisdictions, which have recognised the need for greater consumer protection. This includes the UK, where a moratorium on the use of genetic test information has been in effect since 2001, many European countries 13 and more recently Canada 14 , which have legislated to prohibit life insurers from using genetic test information.…”

Application of a Blockchain Platform to Manage and Secure Personal Genomic Data: A Case Study of LifeCODE.ai in China

“…Human DNA contains extremely sensitive and private information [15], so individuals’ privacy may be jeopardized when genomic and medical data are spread or shared. Health data have traditionally been stored by a single organization in a centralized fashion, but the data may be taken without the users’ consent for unintended purposes, resulting in a threat to the data owners [16,17]. Hence, privacy protection and security are fundamental to the collection and application of genomic big data.…”