Michelle Ananda-Rajah (Higgins, Australian Labor Party) Share this | Hansard source

This Albanese government supports expansion of genetic testing to improve the early detection of diseases in Australians and help them quantify their risk and modify it through lifestyle choices or medical interventions. As an indication of support for genetic testing, in September this year, we announced a landmark reform driven by the advocacy of Dr Jane Tiller, who is present with us, and colleagues at Monash University as well as community advocates like Rare Voices Australia. We did this to end the ability to discriminate against an adverse predictive genetic test. As a result, we have banned its use in life insurance. Underwriting this change will give Australians the confidence to undertake genetic testing without fear that it will impact their ability to access financial security through life insurance.

Rare diseases affect two million Australians, accounting for eight per cent of the population. Actually, rare diseases collectively are not that rare. Eighty per cent of these diseases are genetic in origin, with the rest being non-genetically linked cancers, infections and autoimmune diseases. That should give you an indication of the potential for DNA screening against an entire population. However, delayed diagnosis of rare diseases is the norm, and this includes those cancers associated with these genetically related problems. In fact, 30 per cent of adults have a diagnosis delayed by five years. This in turn leads to poor outcomes, exacerbating stress and anxiety as well as the financial cost felt by patients and carers.

Ovarian cancer is an example. Due to the nonspecific symptoms, like abdominal bloating, and a lack of an early detection test, around 70 per cent of ovarian cancers are diagnosed late. Consequently, the average five-year survival rate for ovarian cancer in patients is quite poor at 49 per cent, compared to 92 per cent for breast cancer, 84 per cent for uterine cancer and 74 per cent for cervical cancer. DNA Screen at Monash University tests for breast cancer, ovarian cancer, Lynch Syndrome and heart disease. With funding of $3 million, DNA Screen has tested over 10,000 18- to 40-year-olds. Two per cent were found to be at high risk—one person in my electorate of Higgins. DNA Screen now proposes to scale this up to 100,000 people, requiring approximately $50 million in investment, as a precursor to a nationwide screening program. This is truly an ambitious plan.

I guess the questions raised are also significant. Arguably, screening is the easiest part of the equation, but how then will the results be managed? We don't have enough genetic counsellors, and GPs do not have the time nor the expertise to fill this gap. Do we have the diagnostic capacity from imaging as well as the radiologists, pathologists and proceduralists to perform the inevitable scopes or biopsies on these patients? We would need to ensure that the downstream impacts on the healthcare providers, the health workforce and the hospital system are manageable. These and other questions are now being dealt with by the health department as well as DNA Screen.

The Albanese government is investing in genomic research and genetic screening in Australia. $66 million is going towards genomic research, including testing of 500 children with cerebral palsy. We are looking to screen 1,000 patients with Parkinson's disease. We're looking to test for more rapid diagnosis and identification of epilepsy in infants and to improve blood pressure treatment according to a patient's genetic profile. Each of the 25 projects will receive up to $3 million in funding, and in August this year Assistant Minister Ged Kearney announced that $5.5 million will be going to establish a newborn screening program for illnesses at birth, including haemophilia, cystic fibrosis and spinal muscular atrophy.

Through the Australian Cancer Plan, the Albanese government wants to improve cancer care in Australia. Genetic testing has great potential in early detection of a range of diseases and in breaking the back of delayed diagnosis for rare diseases as well as rare cancers. Whatever model is finally adopted needs to be equitable, above the postcode lottery, and within the capacity of the healthcare workforce to meet the needs of these patients. It must also be cost effective to ensure that taxpayers get bang for their buck.

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