Mr ENTSCH: I want to add my voice to this issue of profound importance. It’s an issue that merges the cutting edge of science of genetics with the fundamental principles of justice, fairness and empathy. The issue of genetic discrimination in life insurance is a dilemma that places Australia at a critical crossroads. The time to act is now. The field of genetics represents one of the most revolutionary advancements in modern medicine. Its power to diagnose, prevent and treat these diseases is unparalleled. It has the potential to identify individuals at risk of medically actionable conditions and even enable the prevention of certain diseases altogether. However, this remarkable promise is shattered by a grave concern that the use of genetic test results by the insurance industry, which, as we all expect, is likely to lead to wholesale discrimination. On the one hand, we have fantastic work with genetic testing underway and there is enormous potential to make marked improvements in the health of Australians. At the same time, there stands a very dark shadow looming over this bright promise.
To date, numerous nations have already taken the decisive step to prohibit the use of genetic test results as a means to discriminate against individuals in insurance underwriting. Similar nations to Australia, like Canada and the UK, have already enacted bans on insurers utilising genetic testing, but Australia, as a nation that has always strived to be at the forefront of human rights and equality, is tragically trailing behind in this race. Imagine a young mother deterred from genetic testing that could reveal a life-threatening condition for fear of discrimination. Think of families trapped in uncertainty, unable to take preventative measures because they cannot trust that the results won’t be wielded against them. The likelihood of these scenarios could become commonplace and raises profound ethical questions about privacy, autonomy, the insurance industry’s priorities and our responsibility to the Australian people.
We all know that the insurance industry is always trying to find ways to increase premiums and to mitigate claims. I fear that, if we do not restrict their ability to discriminate on the basis of genetics, their desires will be to get the better of them. The last thing we want is to see this country in ambiguity about self-regulation, leading to a situation where Australians are deterred from having potentially life-saving genetic testing. The existing industry moratorium is absolutely insufficient to protect consumers, and frankly we’re leaving the foxes in the henhouse. A self-regulated solution is unstable and uncertain, and it can be rescinded at any moment, leaving Australians in a perpetual state of fear and distrust towards genetic testing. When the consequences of getting it wrong are so serious, I do not believe that we can proceed without a legislated framework.
I’d like to take a moment to give praise, again, like the previous speaker, to Dr Jane Tiller at Monash University and her team for their valuable research and for advocating so very, very strongly on these issues. I can assure you that the work she has done has educated me in many ways on the serious concerns that we, as a country, should have on this issue.
As we move forward, we must engage with the community, the insurance industry and the scientific community to learn from the experience of other countries and to craft laws that reflect our unique context. Our future depends on a vision where genetic information is embraced without fear, where medicine advances and lives are saved. The stakes are high, and I’m sure the Australian commitment to fairness, justice and securing the wellbeing of one another will prevail. Our nation stands at a crossroads, and the path we choose will shape the destiny of countless lives. Let us act without delay and ensure that all Australians can receive the life-saving medical care they need free from any level of discrimination.