Rebekha Sharkie (Mayo, Centre Alliance) Share this | Hansard source

Advances in medical science and health care have led to greater average life expectancy and significant improvements to our quality of life. In particular, the field of genetics and genetic testing has enabled early detection of serious conditions such as cancer and heart disease, and such intervention has saved thousands of lives. However, for some these scientific advances have become a double-edged sword, as many of the previous speakers have said. This is a consequence of our legislative environment not keeping up with our scientific achievements. Australians may take advantage of genetic testing. It saves lives, and that's one edge of the sword. The other edge is that they may be discriminated against if they seek life insurance from life insurance companies that use genetic information in underwriting, consequently denying or increasing the cost of cover determined on those genetic results. The fear of genetic discrimination, particularly within families in which inherited disease is prevalent, is now deterring people from accessing that genetic testing.

So what a ridiculous conundrum we have. We have genetic testing technology which can save thousands of lives, but many people say that they're reluctant to access testing in case it makes them uninsurable or increases the cost of their insurance. Australians should not have to make these life or death decisions because of their genetics, and they should not be discriminated against because of their genetics. We have a legislative failure in this country which consequently allows insurance companies to actively discriminate against policyholders or potential policyholders based on genetic information. That's not how insurance should be. It's not how it's supposed to work. As the field of genetics continues to improve, this perverse situation will only worsen. Our advancements in science should not come at the expense of the individual's ability to obtain insurance products.

This is not the first time in this place that we've heard calls to act. We've got this motion before the Chamber—and I thank the member for putting it forward—but we had a Joint Parliamentary Committee on Corporations and Financial Services inquiry into this in 2018. Five years ago this was raised as a big issue. In 2019, the Financial Services Council introduced a partial self-regulated moratorium. The word 'self-regulated' always makes me concerned. This is commendable, but the moratorium does not provide the level of protection recommended by the joint parliamentary committee report. When we look into this, we find that, compared to other countries, we are laggards. Canada prohibits any entity, including insurers, from requesting or using genetic tests in the provision of goods and services. Similarly, the US prohibits health insurers or employers from using genetic information and has done so since 2006. We certainly don't hold up the USA as a beacon of virtue with respect to health cover. The UK has prohibited the use of genetic testing results across many insurance products, including travel, motor and private health insurance since 2001. Here we are in Australia in 2023, and we lack any similar legislative protections.

Australia has obligations under its human rights agreements, and it has obligations to its citizens. Honestly, we waste so much time in this place. Five years ago we had findings from an inquiry. Since then we've had two different governments, and they have failed to act on this. The parliament doesn't sit long enough to get through all of the work, so we need to be judicious with our time in this place, and we need to ensure that issues such as this that have a material effect on people are given priority. I would say to the government: If not now, then when? When will you act on this? We've known this for years. Let's make this happen. We can't afford to do this to our fellow citizens. It's an easy fix. The rest of the world is ahead of us. Let's catch up.

See this speech in context