Thursday, 25 November 2021
Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021; Second Reading
I'm pleased to rise in support of this bill, the Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021. I recognise at the outset that it is a conscience vote, so these views are my own and I have every respect for those, who'll speak after me and consequently vote, whose own experience and own views may lead them to form a different conclusion than my own.
I approached this from the angle of thinking that there is nothing more terrifying than being an expectant parent, closely followed by every day as a parent after that, and every expectant parent wants a happy, healthy baby. Sadly, for many parents, the joy of the birth of their child is accompanied with a range of emotions when that child is diagnosed with a life-threatening illness, and one child every week is born in Australia with a severe form of this insidious disease, mitochondrial disease. So it's very important to me that I get the chance to speak on this bill, and I'm pleased to say that I will be supporting it.
Unfortunately, the rate of those who carry the predisposition that makes them vulnerable to some form of mitochondrial disease is quite common; it sits at about one in 200. Breakthroughs in medical technology have come up with a way to prevent this from being passed on, which would prevent babies being born with this life-threatening disease. At least 60 Australian babies born each year suffer from severe and life-threatening forms of mitochondrial disease that could be prevented by using the mother's and father's nuclear DNA and replacing the mother's mitochondria DNA with healthy mitochondrial DNA from a donor egg. I understand there are many sensitivities for some when speaking of the science of IVF and DNA, and I greatly appreciate their perspective.
While I can't talk with personal experience of the disease, I can talk with personal experience of the IVF journey. It was very controversial when it started, too. It was a young science, and it had a lot of growing up to do through its successes and failures, but it has helped so many couples along the way, given so many hope when they felt hopeless and brought so many loved and adored children into the world who would not be here without it. I would like to think that I would have been on the right side of history in having voted for its introduction in the way that I'm being given the opportunity to vote for this legislation today. I'm grateful for those scientists and lawmakers who persevered to see IVF become a reality and know in my heart that future healthy children and, just as importantly, their relieved parents, will be grateful we took this first legislative step on mitochondrial treatments.
It's important to understand that this procedure is targeted only at mitochondria. It does not alter personal characteristics or traits, as these are derived from nuclear material. The mitochondrial cells only contain genes essential for normal mitochondrial function. It has been reported in some circles as three-person IVF or cloning, which has stimulated some stigma around donation. We are not talking about three parents. We are talking about replacing the mother's mitochondrial cells with cells that are not predisposed to the disease. We're not talking about choosing eye colour or personality traits. We're talking about giving parents the chance for healthy children. We're talking about preventing passing on this disease and saving families and lives from devastating suffering. Legalising mitochondrial donation would allow impacted Australians to have genetically related children without the risk of them inheriting this very difficult disease that drastically limits their lives.
I don't believe this bill or this science is what its critics say it is. It is not playing God. It is not cloning. It is not designer babies. If it were those things, I would not be supporting it either. I'm not a person who believes just because science can do something that we automatically should. I also have my own deeply held faith that guides my moral compass. But my reading of the bill leads me to reject these criticisms. My faith leads me to believe not that everything is out of our hands or that we are passive observers while a higher plan plays out around us but rather that God gave us the knowledge, the tools and the perseverance to help ourselves and to be purposeful in relieving the suffering of others, as we have the chance to do in this case. Given my experience not just of struggling to start a family or of IVF but of doing this job, listening to all the horror stories of young lives filled with suffering or cut short for meaningless reasons and being powerless to do anything to help, I am pleased to have the opportunity to do something now. In this case, it's to help people, to help kids, and I'm pleased to support the legislation.
There is a little girl by the name of Maeve who lends her name to this bill. She's five years old, and she wants to give people hugs all the time. I haven't had the opportunity to meet her, but I have watched her mum and dad's video about why this legislation is so important to them, and I want to pay tribute to their perseverance for what they are doing and also for the work that they have done on behalf of other families and other little kids who are persevering and have the resilience of Maeve, to ensure that they have a future against this disease. I'd also like to pay tribute to Minister Greg Hunt and to all of those other MPs who have played a role in reviewing this legislation over time.
The bill will ensure that this medical procedure is extensively researched and will be appropriately regulated going forward, including stage 1, which will guarantee over ten years of research and training including a specific clinic with an oversight committee to deliver mito donation to impacted Australian couples. Clinical staff will be specially trained in the field prior to delivering care.
As we've said, the Prime Minister has, appropriately, for our party, made this a conscience vote. This is my first conscience vote in this place, and I'm proud to make this choice to support this bill. I respect, as I said, all those whose conscience and experience lead them to vote against it. But, for me, this is deeply important in exercising this right to save lives. It's why I fought so hard to get into this place—so that I could help parents and kids and help make their lives a little better. I certainly commend the bill. Enabling this research to go forward will enable, I hope, many parents in the future to make better medical choices for their families so that they can enjoy the wonders of a happy, healthy family. I know that Maeve would be proud of the efforts of her parents and would be proud of lending her name to this bill, and I'm very pleased to commend it to the House.