Matt Thistlethwaite (Kingsford Smith, Australian Labor Party, Shadow Assistant Minister for the Republic) Share this | Hansard source

I support the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021, and I congratulate the health minister, the shadow health minister and other members who have spoken in this debate for the bipartisanship and the approach that the House has had to this important legal reform. I support this bill for three reasons: firstly, legalising this technology has the potential to help parents—namely, women—afflicted with hereditary mitochondrial disease to have healthy children; secondly, the introduction of mitochondrial reproductive technology is consistent with Australia's medical and ethical practices, such as organ transplantation and IVF; and thirdly, the introduction of this procedure will be properly regulated by the Embryo Research Licensing Committee to ensure the proper licensing of clinical trials, consultation and evaluation.

Mitochondrial disease arises from certain mutations in DNA encompassing several disorders. It's passed on by the mother and results in many disorders, including muscle weakness, impaired vision or hearing, development delays, heart defects, diabetes and seizures. The member for Mayo has recently outlined the effects on her grandson. It usually affects the brain, eyes and heart and can be difficult to diagnose. It almost always results in a painful death of the child at a very early age, and, unfortunately, there is no cure.

However, new scientific breakthroughs are giving hope. Mitochondrial donation is an emerging assisted reproductive technology allowing the DNA of parents to be combined with a female donor's healthy mitochondria. It allows parents to have children that are 99.9 per cent genetically linked to them and ensure that those children are free of the mutant DNA. In recent years, I've had the pleasure of starting the Bloody Long Walk. This event is close to a 40-kilometre walk that is organised by the Mito Foundation to raise funds for medical research into mitochondrial disease, and it starts in Malabar, in Sydney, in my electorate.

I've met with many parents and relatives who have lost children to mitochondrial disease. One of those families that really touched me is the Tierney family. Elizabeth and Robert Tierney from Botany told me of the story of their brave son, Cooper William Timbery Tierney. Cooper was born on Christmas Eve—the perfect Christmas present for their family. Initially, Cooper was putting on weight and feeding well. But, at three weeks old, Cooper was sadly diagnosed with a mitochondrial complex I deficiency, known as Leigh syndrome. Liz says mitochondrial disease is explained by the doctors as 'any symptom, any organ, at any age'. Sadly, there's no cure, and the best case was to treat the symptoms.

Liz and Robert told me that, despite his obstacles, Cooper was an amazing son. He had an infectious smile, a cheeky spirit and a strong will. But over time he began to deteriorate. That included seizures that stopped his breathing. There was also hypertrophic cardiomyopathy, lactic acidosis, swallowing incoordination, hypospadias, hearing impairment and cardiorespiratory failure. Cooper died peacefully in his mum's arms at the age of six months and one day. Liz and Robert said Cooper's strength, courage and resilience made each day with him brighter and full of hope. They were incredibly proud of their warrior son.

The reform that we debate here today is about giving parents in the future and their children a chance to not suffer the crippling complications that brave Cooper and other children whose lives have been taken by mitochondrial disease suffered. I've asked Liz for her views about this bill, and she said, 'Every parent should have access to the tools needed to provide their children with the best start in life, just as every child should have the opportunity at a healthy life.' It's because of people like Liz, Robert and Cooper that I support this reform to give parents and their children access to the opportunity of a healthy life.

This bill is being debated and voted on by both parties as an issue of conscience, and I recognise and respect the ethical concerns some have regarding the use of such medical technology. I've weighed those ethical concerns and considerations with my Catholic faith, and I've decided, on balance, that the benefits of this reform, particularly for the health of children in the future, far outweigh the risks.

The objection some have to assisted reproductive technologies is that it involves the unnatural creation and destruction of embryos. With respect to those that hold this view, I believe that the issue of the benefit versus the cost of this technology has been settled in Australia in favour of the safe use of this technology. Assisted reproductive technology such as IVF has been accepted and used safely in Australia since the 1980s. The technology has given millions of Australians the joy of having children who might otherwise not have had that opportunity. And the Senate inquiry that looked at ethical and medical issues of mitochondrial reproductive technology concluded that MRT is indistinguishable from ARTs, assisted reproductive technologies, as it does not result in the greater destruction of embryos. Quite simply, if we have IVF, then we can also have mitochondrial donation.

Some have claimed that mitochondrial donation equates to germline genetic modification or gene editing. This is incorrect and misleading. Mitochondrial donation is distinctly different from gene editing, since it does not cut or modify DNA but replaces the entire mitochondria without altering the mitochondrial DNA they contain. This issue was looked at by the United Kingdom parliament in an inquiry that was conducted over there. They determined that mitochondrial donation is not germline genetic modification, and, in 2015, the UK parliament changed its legislation to allow for mitochondrial donation.

This legal reform will be accompanied by appropriate safeguards to ensure the highest ethical and safety standards for the use of the technology. The introduction of mitochondrial donation in Australia will be regulated by the Embryo Research Licensing Committee, the ERLC, a subcommittee of the National Health and Medical Research Council. It will undergo a thorough stage 1 trial. Stage 1 is estimated to be a 10-year clinical trial, and the ERLC will oversee the regulations of clinics, technologies and eligible patients who take part in that trial.

Donation will be anonymous, allowing donor conceived children to identify donors, but donors will not have access to information regarding donor conceived children. Mitochondrial egg donors would not be considered legal parents of the children. There will also be mandatory reporting of adverse events.

In conclusion, I want to thank the Mito Foundation for their advocacy and their support of families dealing with mitochondrial disease and their campaign to have this issue brought to the parliament. I have found the briefings that I've had with the Mito Foundation very informative and rewarding. I congratulate them for their work and for their work with families in highlighting this issue for the parliament. I especially want to thank Elizabeth and Robert Tierney and their brave son Cooper for allowing me to speak about Cooper's disease and unfortunate passing to highlight this issue here in the parliament. They are wonderful family who live in my community and have shown great bravery and great advocacy for others.

I support this bill because it will greatly improve the lives of children and their parents. These are children who would otherwise suffer a horrific and premature death. It gives those families hope that their children will lead a normal, long life whilst appropriately balancing the ethical use of scientific practice to achieve good. On that basis, I will be supporting this bill.

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