Murray Watt (Queensland, Australian Labor Party, Shadow Minister for Northern Australia) Share this | Hansard source

I am just resuming where I left off earlier today. I outlined at the outset that the Labor caucus has decided to approach the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 as a matter of conscience for our members. I outlined that I would be supporting the bill, and I'll explain why a little bit further into my contribution here.

What I was doing earlier today was simply explaining some of the factual basis for what the bill is proposing to do. I think I left off where I was distinguishing between two of the different techniques for mitochondrial donation which are under consideration within this bill. The two techniques are known as maternal spindle transfer and pronuclear transfer. Maternal spindle transfer means the transfer of the nuclear DNA from the mother into the donor's egg, which happens before the donor's egg is fertilised by the father's sperm. The second technique, known as pronuclear transfer, involves both eggs—the donor's egg and the mother's egg—being fertilised. The mother's nuclear DNA is removed from her fertilised egg and inserted into the donor's fertilised egg, which has its pronuclear DNA removed. The reason I go over that again is that it is an important distinction, especially as we are all considering our views on this bill, because the pronuclear transfer happens after the fertilisation of the egg, and the mother's fertilised egg is then destroyed.

As I've said, the vote on this bill, due to its sensitive nature, will be a matter of conscience for members of the Labor Party caucus. This is an extremely delicate issue that raises some very deeply held and serious ethical and faith based beliefs among many in our community. Sadly, mitochondrial disease often has a human consequence, and that is one of the reasons for my decision to support this bill. It can be fatal for very young children, causing enormous grief and real suffering to their families, and there are hundreds of heartbreaking examples. I will go through just a couple.

Baby Chloe Mets was conceived by IVF and was born happy and healthy to first-time parents Joanne and Allan. When Chloe was just six weeks old, a specialist broke the news that their beautiful baby girl might have mitochondrial disease but there was no treatment or cure for the disease. Their bundle of joy was in good health until her immunisations triggered an episode of acute distress and led to an imbalance of chemicals in her little body. The mito episodes were unpredictable and traumatic. Chloe was in and out of hospital for about six weeks. A series of medications kept her relatively stable right up until her final day. Her parents say that she kept people guessing from the moment she was born until the very moment they lost her.

Chloe was diagnosed with mitochondrial respiratory chain disorder. Her parents were told there is only one other case with the same genetic mutation. Joanne then discovered she carries the same mutation, but she's never shown any symptoms. Now she and her husband are in a process of understanding what the mutation means for their family. They believe that legalised mitochondrial donation would give them an opportunity to have a child who doesn't have to experience the same devastating impacts of mitochondrial disease that Chloe did. They are holding on to hope that mitochondrial donation will be an available option. And they're not alone.

Bethany Hodge grew up watching her sister suffer the symptoms of mitochondrial disease, including tremors in her hands, balance issues, hearing loss, speech impairment and intellectual delay. Her family knew there was something wrong, but doctors could not determine the cause of her symptoms or what could be done to help Bethany's sister. After suffering with no solution for years, Bethany's sister was eventually diagnosed with a type of mitochondrial disease called MERRF, myoclonic epilepsy with ragged red fibres. It was soon discovered that Bethany, her mother and her brother were also carriers of this disease.

Bethany grew up watching her sister suffer through the pain of this disease, which makes it difficult to eat, dress, read and write. Now Bethany is ready to start a family of her own and is terrified to pass on that pain to her children. Bethany says:

Mitochondrial donation would allow my partner and I to start a family with the peace of mind … It will stop this vicious cycle of it being passed on from generation to generation.

As I've said, I recognise that there are a range of views on this bill, both within the Labor caucus and across this chamber. It is important that these matters get proper consideration and that all of the ethical, medical and other factors concerning the bill are fully examined. I want to acknowledge the work that a range of groups have done to examine this bill and the potential role of and ethics surrounding mitochondrial donation. A Senate inquiry looking at this matter was held a couple of years ago, and I was a member of the committee that undertook that inquiry. Of course, there's been a more recent inquiry in relation to the bill itself. Since that initial Senate inquiry there's also been an NHMRC review, and the Department of Health issued a discussion paper which gave members of the public an opportunity to have their say on something that is really important and a challenging topic.

As for me, I consider that this bill is an important step in ensuring that families like Joanne's and Bethany's can live without the devastating pain that this disease causes. I recognise, once again, that mitochondrial donation is a scientific development that members of our community may struggle with. That's why I think it is important that what this bill proposes is a pretty cautious approach to allowing mitochondrial donation to occur. What is proposed initially is its application in research, before empowering the creation of regulations which would allow for wider implementation of mitochondrial donation.

One of the reasons I am comfortable supporting this bill is that I think it is putting forward a highly regulated framework that takes into account ethical considerations and that also requires more research to be undertaken. I feel that there are some good parameters being put around the adoption of what is a challenging and new technology. I believe that this bill has struck the balance in addressing the ethical concerns of members of the public by providing a regulated, careful rollout while also providing a path forward to improve the quality of life for thousands of Australian families. Mitochondrial donation, if this bill is passed, will be introduced in a staged way. I think that is the right approach for a challenging topic like this.

In summary, because of the real benefits that I think this will provide to thousands of Australians, because of the way that ethical considerations have been dealt with in this bill and because of the regulated framework that is being put forward, I am personally offering my support for the bill and I will be voting for it.