Anne Webster (Mallee, National Party) Share this | Hansard source

WEBSTER () (): I am glad to rise today to speak in favour of this important bill. The Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 offers a chance to prevent an insidious genetic disease inflicting further pain and misery on future generations. I understand this bill is controversial, and I would like to outline why I am in favour of it.

Mitochondria are tiny structures within our cells which produce 90 per cent of our body's energy needs. They are passed from mother to child through the mother's egg cells. These tiny but vital structures within our cells can be afflicted by disease. These diseases are genetic, caused by mutations in the mitochondrial DNA. The disease varies in presentation and severity, but common symptoms include developmental delays, seizures, weakness and fatigue, muscle pain, vision and hearing loss, multiple organ failure and heart problems, leading to morbidity and, in severe cases, premature death. Around one in 200 Australians are estimated to be predisposed to mitochondrial disease, and approximately 56 children are born each year with a severe form of the disease. The prognosis for these children is that most will die within their first five years. Currently, there is no known cure for mitochondrial disease, and treatment options are mostly limited to management of symptoms.

This terrible disease can be prevented. 'Mitochondrial donation' refers to an IVF process that allows a woman whose own mitochondria may predispose her children to genetic disease to have a biological child that does not inherit that predisposition. Mitochondrial donation allows the mother's mitochondria, which may pass on the genetic disease, to be replaced with a donor's in the IVF process. The egg with the donor's mitochondria and the mother's nucleus DNA can then be fertilised by the father's sperm.

It is important to address some of the criticism of this bill. This process does not create designer babies. It is a targeted process, only substituting a donor's healthy mitochondria for the mother's mitochondria. Mitochondrial DNA has no bearing on eye colour, appearance or any other factor to do with a person's personality. That is all in the nucleus DNA, which is unchanged in the process. For this reason, it does not create three-parent babies. The child will have only two biological parents—its father and mother—and will get its nuclear DNA and all its inherent characteristics from its biological parents. The mitochondrial DNA will have no bearing on this. Mitochondrial donation is not cloning. Children born through this process will inherit their nucleus DNA and their genetic diversity from their biological parents in the same way as any child naturally born.

My decision to be in favour of this bill was assisted by the experience in the United Kingdom. In 2015, the United Kingdom legalised mitochondrial donation after extensive public consultation and scientific reviews. They now have a licensed clinic which operates in a very stringent regulatory framework. The bill before us today is, in many ways, inspired by what is best practice determined through the UK experience.

This bill seeks to amend a number of Commonwealth laws to permit mitochondrial donation for research and human reproductive purposes. The bill does this in a highly regulated and controlled manner, which is appropriate for a new area of research in a delicate area. The bill will be implemented in stages. The first stage will see the legalisation of mitochondrial donation for certain research and training purposes. This will allow an assessment of feasibility and safety to be made before any broader rollout. This will also help build expertise within Australia and will allow clinical trials, which will have the added benefit of allowing some affected families to have access to the technology sooner in a regulated clinical setting.

The bill will allow for five different mitochondrial donation licences to be granted for areas including clinical trials, research and practice. The Embryo Research Licensing Committee, the ERLC, of the NHMRC will see its regulatory remit expanded to oversee these licences and their requirements, such as reporting and monitoring. Certain licences will have specific conditions relating to the approval processes for individuals seeking access to mitochondrial donation. These licences will also specify only certain mitochondrial donation techniques. Initially, the bill permits only the techniques known as maternal spindle transfer, or MST, and pronuclear transfer, or PNT, for use under a mitochondrial donation clinical trial research and training licence or clinical trial licence. This is also the case in the United Kingdom, and these two techniques have had extensive scientific research and review. It is important to highlight that some of these mitochondria donation processes involve fertilised eggs that are not used. However, these are dealt with very early in the process, before the number of cell divisions required to form an embryo.

The second stage will only occur after years of demonstrated success in clinical trials. Depending on the results of the trials, further regulations and discussions of legalisation with states and territories could see accredited assisted reproductive technology centres across Australia offer mitochondrial donation.

The bill largely aligns with current regulations on assisted reproductive treatment, or ART. Mitochondrial egg donors are not considered legal parents, and eggs can only be donated voluntarily by family, friends or others who agree to donate or have eggs in excess of their own needs.

I note the extensive public consultation that has occurred with this bill. In 2018, the Senate Community Affairs References Committee conducted an inquiry into the science of mitochondrial donation and related matters. The final report made four recommendations for further community consultation and scientific review to be undertaken, and for those findings to inform options for legislative change. The Senate Community Affairs Legislation Committee considered the bill, with public submissions and hearings, in its August 2021 report summarising its submissions. The NHMRC also dealt with this topic at length in 2019, with public consultations, webinars and a citizens panel. This year in February 2021 the Department of Health released a public discussion paper.

The ethical questions people may have regarding the bill are well documented in these public consultations, and I thank everyone who raised their concerns to the various committees and panels. I think what we have now is a measured and targeted bill that addresses many of the concerns of adopting this new technology while providing an option for parents who, through no fault of their own, may have predisposition to this awful genetic disease: an option to have their own genetic children who have healthy mitochondria. It is easy to get caught up in the detailed regulations and medical and legal terminology with this bill, but the fact remains that this bill is about doing the greatest good for the greatest number of people. I have had many in my electorate talk to me about this issue. They do not want to see their children or any child suffer from a preventable disease, and neither do I.

Debate adjourned.

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