Parliament Updates

Zali Steggall supports the need for Mitochondrial Donation (Maeves Law) Bill

29 November 2021


I rise to speak on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. The bill amends existing legislation to allow mitochondrial donation techniques to be used for research, training and human reproductive purposes. The overall aim is for women at risk of passing on a mitochondrial disease to have reproductive options for biological children without the increased risk of their child having mitochondrial disease.

It's really important for people, before judging, to understand just what having a child with mitochondrial disease means. Mitochondrial disease is a group of inherited conditions that can cause serious health issues and, in severe cases, death in childhood. Disease is caused by mutations that impact the function of the mitochondria, meaning it reduces their ability to produce energy. To give you perspective: in Australia about one in 200 babies are born with some level of mutation that could lead to mitochondrial disease in their lifetime, and about one in 5,000—so some 10,000 Australians—develop severe or life-threatening mitochondrial disease in their lifetime.

This is very important to Warringah. The bill is named after Maeve, a little girl who, at the time of drafting, lived in the minister for health's electorate. I commend the minister for health for his compassion in bringing this bill forward. He's working with the family and ensuring that a conscience vote is available to the members in this place on this legislation. I wish there were more such votes on so many issues in this place. Maeve's grandfather now lives in Warringah, and I spoke with him recently about the bill. He was worried that this bill wasn't going to come on before the end of this term, and he was fretting that, if there were any further delay in voting on this legislation, more families and more children would be impacted. It is vitally important that we debate and consider this bill as soon as possible because, as he explained to me, while the bill won't help Maeve, it will be vitally important for many future children and families. He would like the House to know that Maeve is a wonderful, happy child. She has already far exceeded her life expectancy: she is eight years old. Greg implored me to vote in support of this bill, and I will be doing that.

The Mito Foundation have a strong presence in Warringah. They do fantastic work to support people affected by mitochondrial disease, and they're raising funds for essential research into the prevention, diagnosis, treatment and cures of mitochondrial disorders and increasing awareness about the disease. Very recently there was the Bloody Long Walk, which traverses four of the beautiful beaches of my electorate. Excuse me; obviously, the title of the walk is because of the length of the walk. It traverses Dee Why, Curl Curl, Freshwater and Manly. It is one of the fundraisers for the Mito Foundation. I have been a proud participant in the Bloody Long Walk numerous times. Excuse me; I really shouldn't repeat the name. It's probably an unparliamentary term, but it is the name of the walk. It is some 35 kilometres long. It was held once again the weekend before last, in horrendous weather. The coastline of the Northern Beaches was full of drama, under dark storm clouds, but so many participated because they know this is such an important cause.

A mitochondrial donation is an assisted reproductive technology that can assist women to avoid passing mitochondrial disease to their children. It works by creating an embryo, by using the nDNA from the perspective mother and father and healthy mtDNA from a donor. In the UK, legislation was introduced to permit mitochondrial donation in 2015, and the UK remains the only country that has done so. Our current legislation prohibits mito donation under the Prohibition of Human Cloning for Reproduction Act 2002 and the Research Involving Human Embryos Act 2002. It's time for that to be amended and to bring the law forward to these developments.

The bill amend these acts to make donation legal for research and human reproductive purposes. The bill creates a two-stage implementation approach. It has been thorough, to ensure that there are no abuses and that this is done to the highest standards. In the first instance, there will be limits on the number and type of licences to practise the procedure, in preclinical and clinical trials only. And then, once clinical trials have been shown to be successful and the findings of stage 1 reviewed and accepted as safe and effective, stage 2 will permit mitochondrial donation in clinical practice. Stage 1 will allow eligible women to access mitochondrial donation by participating in the clinical trial. It's anticipated that a low number of people will access the technology, and the women who do participate may require multiple rounds of IVF. The trial is expected to take place over approximately 10 to 12 years, so this is a really slow and very careful process, but it will make such a difference to the families involved, to the women who fear passing on this condition to their children.

The process to get this to legislation has been very comprehensive, starting with a Senate inquiry in 2018. The government responded to the Senate inquiry report in February 2019, which led to the creation of an expert working committee in March of that year. And then, between September and November 2019, the NHMRC undertook community consultation on the social and ethical considerations of the possible introduction of mitochondrial donation in Australian clinical practice. Finally, the Department of Health conducted a round of consultation between February and March this year. So, for all those worried about this legislation, this has been a very thorough process, and I believe that the government has got the balance right on this legislation. I support the bill and commend the consultation process and, in particular, the minister for health.

There have been social and ethical concerns raised, and I acknowledge that some in the community may have ethical concerns around the right of the child, the status of the embryo, the role and rights of women donating eggs and community considerations, but I'm convinced that the consultation process has been thorough and that the balance of the advantages of mitochondrial donation outweigh these concerns. There are appropriate safeguards in place to mitigate ethical and medical considerations. They've been taken into account, and I support the advancement of science that will prevent the occurrence of children born with this disease that this treatment can prevent. This is one of those times when we have an opportunity in this place to make a very real and very significant difference to the outcomes and lives of so many mothers as they then approach their journey to motherhood and the families that that will involve, because this does impact whole families.

I thank the government for presenting this bill. I also thank them for making this a conscience vote. I wish we saw more of that in this place so that we actually had a more, I think, genuine debate and genuine approach to legislation so we can really talk about how meaningful they are rather than trying to make it a political fight. I commend this bill to the House.

Finally, I would like to finish by thanking Maeve's family, because they have been on an incredible journey like all the families that have been impacted by mitochondrial disease. They have been incredibly resilient and incredibly dedicated to ensuring that others are not met with quite the same challenge that they have gone through. They are doing an amazing job, but they would like to provide more optimism, a better prognosis, for others to make sure that they don't have to go through the distress and heartbreak that this condition can bring on families and children. So thank you to Maeve's family and to Maeve for being the namesake of this legislation that I hope will change many lives.