Deborah O'Neill (NSW, Australian Labor Party) Share this | Link to this | Hansard source

I rise to speak to an important development that happened last Wednesday here in the parliament, where I stood with many of my Labor colleagues and the Minister for Financial Services, Stephen Jones, to announce a ban on life insurers using genetic testing to deny cover or to hike premiums.

I want to put a little bit of a personal spin on this. Often the work that we do here in the parliament is something people don't understand. They often think that we're somehow different from the general community. Certainly I can say when my interest in the area was sparked. It was back in about 2017 or 2018 when, through the inquiry of the Parliamentary Joint Committee on Corporations and Financial Services into the life insurance industry, I found out that there was a proposal to allow insurers to use genetic information basically to discriminate against Australians and to put the prices of their insurance up accordingly. Our report was part of a body of really good work done by the chair, Mr Steve Irons, who is no longer in the parliament; Terri Butler; Jason Falinski; Jane Hume; Matt Keogh; Chris Ketter; Bert van Manen; Peter Whish-Wilson; John Williams; Nick Xenophon; and me. In it we said:

As the use of genetic testing … in health care increases, concerns have been raised around privacy and genetic discrimination.

…   …   …

In response to … concerns over genetic discrimination, several countries have enacted legislation or voluntary agreements to restrict or fully ban the use of genetic information by insurance companies.

I can let you know that I worked very hard with my colleagues across the chamber and with the insurance industry, which was covered under the Financial Services Council at that point in time—it's now with CALI, a different entity—to make sure that we got a moratorium on genetic testing. Little did I know how that would actually intersect with my own life.

We do a lot of work in this parliament that we're called to do. You hope it's going to be of benefit generally, but often you don't expect it's going to benefit you. I'm actually part of a family where I'm the eldest of six children but I have only four siblings remaining because my sister died of acute myeloid leukaemia when she was only 19. Five years later, my father died of a brain tumour. We had a really good run for a long time, with marriages and babies and other celebrations that were really good, but then my niece, who was nearly four, died of liver cancer. Five years later, her father—my brother Sean—passed away with a brain tumour. Sometimes in a family you just think, 'How can we have such misfortune?' But somewhere deep inside you know there's got to be an explanation for this. We again had a really good run, but not so long ago one of my nephews had a lump discerned by a doctor. It wasn't biopsied. But later on he went and got a bit more advice, and he went to a doctor who had a protocol because of genetic testing and genetic medicine. The doctor said, 'When I look at your family history, you might have a genetic mutation.' Instead of being able to get his health treatment immediately, my nephew had to go and get financial advice. He had to go and set up insurance. He had to do all of those things before he could even get a genetic test, because of the way insurance currently works in this country.

That's why what happened on Thursday last week was so important. I'm so proud of the work that we did right across the political spectrum to raise awareness about this, to hold a moratorium and to continue the work with the insurance sector so that we're now on the cusp of bringing legislation to this place to prevent the kind of discrimination that happens. The last thing you need when you have been through the sort of trauma that my nephew has been through is to have to go and confront that kind of reality.

There are many really, really good reasons why this legislation, when it comes to the parliament, should be passed immediately, including the fact that the sort of genetic testing that needs to happen, so that we find out more and more and more, could make a difference. My siblings, my father and my niece who died would have had very different treatment, without radiotherapy, if the genetic knowledge had been there. We need to advance on this. And I'm very proud of the Australian parliament for where we are.