Federation Chamber - PRIVATE MEMBERS' BUSINESS - Genetic Research

Federation Chamber - PRIVATE MEMBERS' BUSINESS - Genetic Research Main Image

27 November 2023

I am thankful for the opportunity to speak on this very important topic. It's a growing issue that we are facing across the world. I'd like to thank those who'll be speaking on the motion and also Dr Jane Tiller from Monash University, for her passionate efforts to have this issue brought to this parliament's attention and for her research work in advancing this cause nationwide.

Genetic testing provides lifesaving information. It can also provide life-altering information to groups such as insurers and employers et cetera that can be used against individuals and their families, which can impede not only their recovery and the healing process but also their financial wellbeing and even their employment wellbeing. I've seen in my own field of paediatrics an explosion in the ability to diagnose genetic conditions, often to very great benefit. For example, there's a condition called spinal muscular atrophy, which was universally fatal, usually before the age of three, and it's now diagnosable in the neonatal period, and treatment is being offered that is allowing normal development in these children. This is a remarkable improvement. Carrier screening is also being offered to these families. It may enable people to live normal lives when previously they couldn't.

However, in spite of the enormous advantages, this information can provide great detriment to people diagnosed with genetic conditions, and the ability to diagnose these conditions is increasing all the time. Insurers can increase premium costs if people are now recognised as having certain genetic conditions, and they're expanding all the time. We're now recognising genetic conditions for sudden death, cardiovascular disease and dementia. We know that these can be used by insurance companies, employers and educators to restrict people's access to employment, benefits and financial success. It's an unfair and an ugly use of genetic testing, and this must be stopped. We should not allow genetic testing results to be used by insurance companies, employers and a whole range of people to discriminate against individuals and their families. No-one can choose their genes, and we've always offered insurance on the basis of community risk, and we've covered people accordingly for things like health insurance et cetera. However, there now is the potential for this information to be used against people's interest, rather than for their benefit. It greatly concerns me.

This is a major concern around the world, and many countries have already legislated to prevent companies using genetic information to discriminate against people. It's important that this parliament acts to protect Australian consumers and people now and into the future. This is why legislative prohibition on insurers using genetic results to discriminate against people is urgently required. It's only through amending legislation to give patients and consumers certainty about the ongoing protection of their genetic information that genetic information can benefit the community. In Canada, legislation completely bans the use of genetic results in any goods or service offering, including insurance. Only if an individual chooses to provide their genetic test results can an insurer or other agencies, such as an employer, act. It's important to stress that it's the individual's choice to release that information. Patient privacy is paramount and must not be shopped around by insurers and risk assessors et cetera. No Australian should be discriminated against due to their genetic test results. I want Australians to have peace of mind about this, and it's important that this parliament acts.

Individual health and wellbeing are too important to be sidelined and managed by a group of financiers and insurance agents. Our healthcare system cannot have individuals go without these test results because they're worried about the implications of what might happen to them or their families. And it's important to note that genetic information affects not just the individual but their families, and it's very important that they are protected as well.

I thank the minister for health and the Prime Minister for the recent announcement of $66 million to be invested into genomics research, but that should be tempered by an understanding of the risks of those results to people suffering from a number of serious diseases and some chronic conditions. Genomics medicine is revolutionising health care; I've seen that in my own practice, but we must protect people who suffer from these genetic conditions.