Tania Lawrence (Hasluck, Australian Labor Party) Share this | Hansard source

Genetic research offers amazing advances in the treatment of disease. A few years ago Melbourne University reported genetic research that identified vulnerability in lymphoma cells that might lead to a new approach for cancer treatment. In March this year, Minister Butler announced that Monash University will receive $50 million through the medical research fund for the mitochondrial donation pilot program. Mitochondrial disease is debilitating and potentially fatal with significant impacts felt by both patients and their families. The funding will support research and ongoing monitoring of trial participants, including children.

In August, Duchenne Australia held an event here at the Australian parliament, which my office attended. Duchenne muscular dystrophy, or DMD, is the biggest genetic killer of boys. As for many genetic and other conditions, early diagnosis and treatment can make a world of difference to a child's life and a family's distress. For DMD, muscle can't be put back, but treatment can slow down deterioration. We want this sort of world-leading research and early treatment to occur in Australia. For genetic conditions, genetic screening is the obvious course, and genetic research is essential.

I thank the member for MacNamara for bringing this motion before the parliament. It is not a new issue, but the motion is timely as it is important now for the government to consider, in the lead-up to the end date of the current insurance industry moratorium, whether the self-regulation in this space is sufficient or whether legislative boundaries will better achieve the ends that we agree are necessary.

An insurance environment where personal screening is deterred by economic consequences or where engagement in genetic research is deterred in the same way is wholly problematic. We need to ensure that there is no chilling effect. We can multiply the examples I've referred to already by any number of conditions where early knowledge and better research will make a world of difference. I know that people across the country and in my own electorate of Hasluck are glad for the research happening here. I know they are happy about the recently extended funding of newborn testing, for example, to cover a much more extensive range of conditions, for knowledge is power. The government needs to ensure that that knowledge does not lead to disadvantage or discrimination.

I met with Dr Jane Tiller of Monash University in May this year, to hear about her work and the Australian genetics and life insurance moratorium:monitoring the effectiveness and response study, referred to as the A-GLIMMER report. The A-GLIMMER report, delivered earlier this year, found that genetic discrimination in life insurance still occurs and deters people from seeking testing and engaging in genetic research.

I want to share an example of disability advocate Anwen Handmer, who is also my sister-in-law. She states: 'Gene therapy is the very cliff face of medicine for us all—medicine which is not condition specific but gene specific.' Right now, a bunch of Anwen's cells are in the lab as Professors Sue Fletcher and Steve Wilton test an application which has already had a huge success with rare diseases. Anwen states that at present her cells are being used to test exon skipping therapy on exon 32 of one of her dysferlin genes. She has dysferlinopathy because of mutations in the DNA of both copies of her dysferlin gene. She says:

If successful, the treatment will provide me with one effective, functioning dysferlin gene. This means I will be able to produce dysferlin, a protein which repairs fast twitch muscle after deterioration associated with normal muscle use. Progression of the disease would halt and regeneration of some muscle tissue is likely. It is not a cure, but it's a very, very much needed treatment.

She goes on to say:

The magical thing is that the same application targeting exon 32 on my dysferlin gene will work for someone with an entirely different condition—if that condition is caused by a mutation on exon 32 of the respective gene—it could be Motor Neurone Disease or Leukodystrophy or cancer or one of any number of diseases, rare or otherwise. Knowing the genetic sequence behind the condition will be as crucial to treatment as it is to diagnosis.

The A-GLIMMER report, though, casts doubt upon the efficacy of the industry's self-regulation. Whilst the insurance industry appears happy with the moratorium and code and, presumably, would like to have it extended, I'm confident that the government will find a fair course to chart to ensure that families, researchers and the insurance industry can come to a happy medium that protects genetic research for the future.

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