Deborah O'Neill (Robertson, Australian Labor Party) Share this | Hansard source

I too want to thank the member for Fremantle for raising this issue of great importance and the motion for debate in this place today. Advances in gene therapy will be the 21st century health breakthrough. Isolating one of 20,000 genes found in every human that carries breast cancer or hereditary genetic disorder and replacing it with a functional gene will mean longer lives, less pain and less suffering.

Innovation and invention are inherent in such breakthroughs, and are very much the drivers behind economic growth, productivity and general progress. Innovation certainly needs to be nurtured, encouraged and safeguarded to ensure that the spirit of creativity is instilled in our society. We need innovation to continue to strive for the betterment of our fellow community members. However, when we are protecting not what is invented but what already exists, and when we are prohibited from accessing medical advancements because of protections, we must consider our values carefully. Gene patents limit usage of an estimated 20 per cent of all human genes. This puts a stranglehold on a clinical institution’s ability to carry out their most important work.

It is not just that private organisations, the sole owners of genes, can compel medical groups to stop using what is, under law, private property—even for research or testing purposes. The problem of restricting gene use to only those who hold the patent serves to restrict the growth of educational and research possibilities for the Australian medical industry. The Peter MacCallum Cancer Centre—Australia’s only public hospital solely dedicated to cancer treatment, research and education—articulates the worry that day-to-day screening work, commonly done by public laboratories, will be severely reduced as more and more genes are made off limits through private intervention. The centre has raised specific concerns about the potential to skew research into genes BRCA1 and BRCA2, whose mutation commonly results in breast cancer. While testing might be available, albeit at an inflated price, occasional testing of more obscure gene mutations would not be accessible, as the commercial need would mean private sector development of testing practices.

This kind of testing environment would leave Australian researchers and clinicians unskilled in detection, and would put patients at risk due to a lack of testing availability. So a fundamental issue in gene patenting is that of access—access to affordable health care, access to best practice treatment, access to world leading research and development. This fear of a lack of access is also held by the Association of Genetic Support of Australasia, a charitable support group for many families and their children. The association deals with genetic disorders on a daily basis and fears the worst if genetic patenting is to continue unhindered.

I am not comfortable allowing the Australian experience of universal access to health-enhancing and potentially life-saving testing services to mirror that of the United States, where too often we hear that only those who can afford it are assured of care. We cannot let a situation develop that would require an Australian patient to travel overseas to have a test performed there because it is cheaper than having it done locally. We must work to ensure that we sufficiently skill and enable our medical personnel to perform tests quickly, cheaply, and locally, so that patients are not forced to send samples overseas to get results in a less timely fashion than would be the case if testing occurred in Australia.

There is another critical aspect to this debate. As gene therapy progresses, so will the issues of privacy related to it. Australia’s current insurance industry maintains fair and balanced membership standards where the presumption, even with existing medical conditions, is that cover will be granted to those who apply without prejudicial knowledge of what may occur to the applicant 10, 20 or 30 years down the line. However, as our knowledge of this area increases and we are able to link genes to specific medical conditions in later life, we must ensure that patents are not used to prejudice the hopes or chances of fairness in the future.

It is the responsibility of this government, and all governments, to ensure that their people have unencumbered access to the best standard of health care, and while gene patents are restricting development of medical advancements that cannot occur. As such, I support the call from the member for Fremantle to amend the Patents Act 1990 to ensure that patents cannot be granted over any biological materials which are identical or substantially identical to that which exists in nature.

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