Tuesday, 30 November 2021
Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021; Second Reading
I intend to speak only briefly tonight on this bill, the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. I do think it is important, particularly in the context of a conscience vote, that members indicate to their communities where their views lie in relation to this matter so they understand the vote they are about to take. I'm delighted that this has been the subject of a conscience vote. I can think of a few other issues where I would like to see a conscience vote as well over the weeks ahead, but it is an appropriate matter for us to be considering in this way.
I particularly want to thank the Minister for Health and Aged Care, Greg Hunt, for his work to make sure that the entire parliament has been able to consider what is obviously a very significant issue. I know his shadow minister has done the same. I particularly want to highlight the work and the contributions during this debate of the member for Higgins and the member for Macarthur. We are blessed to have two such eminent doctors and medical specialists within our ranks, and I think it improves our capacity and the quality of debate in this parliament.
I also want to give an acknowledgement to Professor Carolyn Sue, who is the executive director of the Kolling Institute of Medical Research at the Royal North Shore Hospital. Carolyn spoke to me about this legislation, or the concept of mitochondrial donation, many, many months ago. She is one of the leaders in the field of understanding mitochondrial disease, she is a strong advocate for this bill and she is a very impressive medical professional, and I am grateful for the dedication that she has brought to this issue.
For me, whilst I understand the reservations some members of this House have, the issue is very clear. This is about providing a new opportunity that didn't previously exist for so many Australians who have mitochondrial disease, and I particularly think of the children and their parents who encounter the devastating diagnosis that mitochondrial disease is present. It is a disease that affects people in different ways. It affects different organs of the body. The mitochondria are the battery packs of our cells. The manifestation of a genetic mutation does affect people differently, but the prognosis for many is so devastating.
As chair of the Standing Committee on Health, Aged Care and Sport, what I do know is that rare diseases like this can scar families forever, both because of the level of care that's required and often because the prognosis can be so grim. During my time as chair, I have met with, heard from and read the writings of so many parents and so many medical professionals who have highlighted the important potential that we have to start to address some of those rare diseases that have eluded medical science to date. Mitochondrial disease is one of those. It is extraordinary that we are debating this bill today because it reflects just how far medical science has progressed over the last decade. It reflects the work that's being done in so many areas, with genomics and precision medicine. It has opened an opportunity to improve the quality of life and prevent serious illness in newborns and to ensure that parents can go forward knowing that they're not risking having children that might suffer these ailments.
So, in a circumstance where 120,000 Australians carry a mitochondrial mutation, where 56 children each year are born with mitochondrial mutations and potential for disease, this bill makes sense. I particularly want to acknowledge the testimony that we heard in this place from the member for Mayo about her own family circumstances, about her own grandchild. That was incredibly moving. I spoke to her afterwards. When you see the photos of that baby, that infant, knowing what he will be deprived of in the years ahead, it just makes sense that we pass this legislation today. Yes, there are ethical issues, but this represents a very cautious approach. It represents a staged approach. It is world leading. The UK is the only other nation that's been down this path before us in the way that we're proposing. But I do have a high degree of trust in our medical experts and our medical scientists. Therefore, it will give me a great deal of pleasure to provide the hope to so many families that supporting this bill will entail. I commend the bill to the House.