Monique Ryan (Kooyong, Independent) Share this | Hansard source

It is with great pleasure that I rise to support this motion from the member for Macarthur. When I was a youngling doctor, ordering standard chromosomal testing was about the limit of what we could do. We can now routinely test for genetic changes on blood, cheek swabs, saliva samples, tumours, chorionic villi and amniotic fluid. We can even test for changes in fetal cells derived from a mother's bloodstream. Clinicians can now order whole genome sequencing from clinic with a few mouse clicks. I was fortunate, during my previous career as a paediatric neurologist, to be involved in identification of the genes responsible for 11 neurological conditions and to lead some of the first gene and genetic therapy trials in this country. Those technological advances were unthinkable when the member for Macarthur and I were medical students several centuries ago. But, as always with rapid advances in clinical medicine, it's really important that we examine all aspects of impact—both cost and benefit—in building the case for scalable, sustainable and equitable genetic and genomic health care.

There are significant challenges locally with access to genetic testing services in Australia. I recently met with my colleagues Professor Stephen O'Leary, Lilian Downie and Valerie Sung, who are representatives of the Childhood Hearing Australasian Medical Professionals network. They also work at the University of Melbourne, Royal Women's Hospital and the MCRI. They told me about their concerns regarding federally funded genetic testing. The Medical Services Advisory Committee recently approved new item numbers for genetic testing for hearing loss in children and for adults with hearing loss, but they allotted fees significantly lower than those recommended by the experts. Because the rebate offered is below the cost of the test, the few qualified Australian laboratories have been unable to offer this genetic testing. This problem, while vexatious, is not unique; rebates offered for testing of other conditions are often funded below levels that make it possible for labs to offer the test. When these investigators requested review of the MSAC decision, they were told that not only would they not get an answer for the disparity in the funding but they would have to file a whole new application if they wanted it reviewed. Those clinicians have been let down by the system. It lacks accountability, it lacks transparency and it lacks clarity.

I've also previously spoken in this House about the issues around life insurance and the fear of genetic discrimination in this country. Earlier this year, I spoke to a motion from my colleague the member for Macnamara regarding that the government act by amending the Disability Discrimination Act 1992 as it applies to genetic results. This morning the government has announced a consultation period regarding options for regulatory interventions into the insurance industry. While recognising the stresses upon our insurance industry, which are manifold—particularly given the increasing impact of climate change—we do need to ensure that concerns around the potential impact on insurability don't dissuade people from undergoing important genetic testing. It can have an impact on not only their medical care but also their family members. We have to guard against adverse selection—where people, knowing that they have a genetic disease, seek cover that they would not otherwise obtain—but we also have to ensure that individuals are not deterred from potentially life-saving genetic testing and from participation in genetic research. I look forward to working with all of my constituents on suggestions regarding these possible regulatory changes.

Recently, the federal government's Department of Health and Aged Care's capability review identified the need for us to be on the front foot in the revolution in genomics. The government recently announced $66 million for genomics research by the MRFF, but, as is often with the case with the MRFF, we don't have a vision for all aspects of this research and the basis for funding allocations.

I do support calls not only for a national genomics strategy but also for an overarching diagnostics advisory group, which will not only improve genetic and genomic diagnosis in this country but also establish a road map for all aspects of our healthcare diagnostics and treatments.

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