Tuesday, 30 November 2021
Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021; Second Reading
I thank the member for Robertson for her contribution. I think the contributions of members on both sides of this debate have been very thoughtful and very considered. It really is the parliament at its best. We are having a conscience vote on an issue that I know is deeply personal for a lot of people. I want to say tonight that I know there are genuine views on both sides, with people in favour of this legislation and people who are concerned about this legislation. While I respect all those views I will be voting in favour of this legislation, the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. I believe that if we have the opportunity to prevent the suffering of children, to extend their lives, we should take that opportunity.
I understand that some people in the community have a concern that this is a slippery slide into designer babies, into choosing the genetic make-up of children in the future. I understand the member for Robertson's concerns. She was speaking about the different types of mitochondrial donation techniques, the maternal spindle transfer technique as compared with the pronuclear transfer technique. I have thought deeply about these issues and I genuinely believe that, with the pain, the suffering, the shortened life span and the illness suffered by many children who have a mitochondrial disease, the sadness of children's families and the impact on those families make these scientific advances worth pursuing.
This bill amends existing legislation to make mitochondrial donation legal for research, training and human reproductive purposes. As others before me have explained, mitochondrial disease refers to a group of inherited conditions caused by mutations in a person's DNA impacting their mitochondria—the part of our cells that helps the body produce energy. When these cells don't function properly, the body can experience organ failure, serious illness and death, particularly when the mitochondrial disease affects high-energy-use organs like the heart and the brain. But, of course, there are a broad range of impacts that can be experienced by sufferers of these conditions. It's extremely serious. Children with severe cases suffer tragically shortened life spans, usually between three and 12 years. Currently there are no available cures. There is a lot of encouraging research into elements of treatment, but there is no cure. Prevention is, I believe, obviously something we should be aiming for.
About one baby a week is born with mitochondrial disease. That is one family every week who is getting the news that the life of their beautiful new baby is likely to be shorter and that there are likely to be significant health impacts during that shortened life. The aim of this bill is to give parents who are at risk of passing on this disease options to have biological children without those children carrying increased risks of these diseases. Mitochondrial donation involves creating an embryo through IVF using DNA from the prospective mother and father as well as healthy mitochondrial DNA from a donor. It is worth restating, of course, that in Australia we are bound by an existing regime that ensures that that donation is made not for financial gain but altruistically.
The bill facilitates this change by changing existing legislation to ensure that it's no longer an offence for the purposes of reproduction and under relevant mitochondrial donation licenses to create a human embryo that (a) contains the genetic material of more than two people and (b) contains heritable changes to the genome. There are tightly established processes around this. The bill takes an approach that is staged and controlled, with the hope that the techniques will be safe and that there will be no unforeseen consequences in opening up this approach.
As the member for Macarthur, Dr Mike Freelander, has said, this isn't about allowing a free-for-all for genetic alterations; it's about providing strict legislative oversight to allow one or two clinics to begin trials. I want to congratulate the member for Macarthur, the member for Higgins and the others in this parliament who have been working in a very cooperative way to advance this bill. The minister for health, the shadow minister for health and the former shadow minister for health, Chris Bowen, have all been very supportive of progressing this issue. I understand that people of good faith will disagree with these changes, but it is my belief that, as long as we can establish proper safeguards, our priority should always be the health and welfare of children. No child would ever make the choice to be born with these conditions that can be so life limiting, and I think that if we have the opportunity of giving more children the chance of a life free from mitochondrial disease it is important that we take that opportunity.
I have spoken to Sean Murray, the CEO of the Mito Foundation. Sean came to me a few years ago, beginning the process of lobbying not just on this bill but on a range of better genetic testing for parents and a range of other changes that the Mito Foundation want to see. I want to thank Sean for explaining how important this change is, and I want to congratulate the Mito Foundation on the wonderful work they do: educating people about mitochondrial disease; talking to parents who are likely to have a child with a mitochondrial disease or who have had a child born with a mitochondrial disease; supporting those families; backing the research; fundraising to do more research on treatment and prevention; and setting up the Mito Registry, which allows sufferers of mitochondrial disease to register to be part of clinical trials to access new treatments and new medicines and to be part of other studies. The Mito Foundation have obviously been championing this legislation and doing amazing work, both in their lobbying and in the fundraising they need to do to keep going. Their Bloody Long Walk was held just recently. I know that it's a very difficult environment for fundraising at the moment, but I want to congratulate the Mito Foundation on the fundraising that they have achieved and congratulate the people who have been involved in that.
Sean told me about the challenges facing people affected by this condition and how it has impacted generations of his family. So, as well as thanking him for sharing his story and thanking the Mito Foundation for the work they do, I want to thank the brilliant doctors, nurses and other health professionals that support children and some adults who are suffering mitochondrial diseases. I want to also thank the researchers who give people hope for treatment and cure. And I want to thank all of those families, in particular, who have been campaigning for this change—Sean Murray and the Hood family, Maeve's parents—whose advocacy over so many years has resulted in this bill. The reason I will support it is that, if we can prevent children being born with a condition that shortens their lives and comes with pain and suffering, I believe that we should.