Anne Urquhart (Tasmania, Australian Labor Party) Share this | Hansard source

I'm pleased to have this opportunity to speak in support of the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. A lot of what I will say has probably been said, but I did feel the need to put my voice to this because I do support the bill, and I do support the outcomes this bill will achieve for parents, children and people in our community with mitochondrial disease.

Today I don't speak on behalf of my whole party; I speak as an individual senator, because this will be a matter debated and voted on as a conscience vote—a free vote. We know that. We know the members of my party will have a conscience vote on this matter. As I said, I felt the need to put my voice on the record for this. It's consistent with the way in which the Labor Party has treated issues around embryo research since 2002. There are matters of conscience around embryo research and matters that deal with abortion which are free votes. That decision is not made lightly, and I trust that I speak for my fellow Labor senators when I say I really appreciate the opportunity with which we are provided and the consistency of our party's approach on these matters.

The bill is appropriately named Maeve's Law after Maeve Hood, a young girl from Victoria with mitochondrial disease. Mitochondrial disease is a debilitating genetic disorder that strips the body's cells of energy, causing multiple organ dysfunction or failure and, quite often, death. It has no cure, with treatments currently available aiming to decrease the effects of the symptoms. At present, these treatments do not significantly change the course of the disease. That's why I support the passing of this bill. I hope it does pass this parliament.

We know around one in 5,000 babies born in Australia—that's more than one baby a week—will develop a severely disabling and likely terminal form of this disease. Most of these children will die within the first five years of their life. It's hard when you grapple with that. If you're a parent and you know there may be an opportunity to save your baby, would you not put that forward? I think that's the opportunity we should make as legislators, in giving that choice to those parents through supporting this bill going through the Senate today.

Mitochondrial disease is caused by a defect in the baby's mitochondrial DNA, which is a type of DNA that is passed only through the mother. It is passed on through the egg cells rather than the sperm cells. Our mitochondria help translate the food we consume into energy to enable our bodies to operate effectively. Mitochondrial donation involves replacing the mother's mitochondria with mitochondria from a donor egg. Mitochondrial DNA does not influence characteristics such as height, eye colour or intelligence. All these characteristics are determined by the nuclear DNA, which is not impacted at all by the donation process.

We've heard today, and through the many inquiries and reports that have brought us to this place, much about all the technical and ethical issues that the bill raises. These issues are of concern for some members. I appreciate those concerns and I have considered them deeply, but I hope that today, in the vote we will have in this place, we will reach a point where we decide that this bill is about people. It is about people attempting to save their children from a terrible disease. It is about babies. It is about very young children and their parents, grandparents and wider families. It is about relieving suffering and giving children the opportunity to live a normal healthy life and realise their full potential.

My view is very much informed by the knowledge that mitochondrial DNA is distinct from nuclear DNA, which makes up the overwhelming bulk—as much as 99.9 per cent—of a person's DNA. It is the nuclear DNA which determines what we would understand to be a person's unique characteristics—their looks, their personality. Mitochondrial DNA constitutes one one-thousandth of a person's DNA, and its basic function is to convert food and oxygen into energy. Some describe it as our battery pack. Whereas nuclear DNA goes to make-up what we understand to be the unique characteristics of a human.

I note that we as senators must grapple with the fact that this bill raises issues that must always be considered in relation to science and health care. These issues are as old as medical science itself, and we continually hear about looking at the science and the medical advice. The    questions are: How much should we intervene? How far should we go? Is this a move towards designer babies? I do understand that some members of my community hold ethical and faith based beliefs which make consideration of this issue very difficult for them personally.

Personally, I find comfort in the fact this bill is consistent with the definition of embryo under the law in Australia. Both of the two main approaches to mitochondrial donation—pronuclear transfer and maternal spindle transfer—probably do not involve activity undertaken at the point of an embryo. I think everyone in this chamber recognises that this raises very sensitive issues. We are dealing with a disease that too often is fatal for very young members of our community, causing enormous grief and real suffering to their families, their friends and their extended families, and we're dealing with some deeply held serious ethical and faith based beliefs.

Mitochondrial disease is an incredibly serious genetic disorder, which is, as I've stated, often fatal for very, very young children. Energy-demanding tissues, such as brain and muscle, are most commonly but not exclusively affected. In Australia, the incidence of mitochondrial DNA mutations is predicted to be at least one in 250, with several hundred families already diagnosed, although many carriers remain unidentified. Some families have multiple generations of affected individuals, often with devastating consequences. Their healthcare needs present enormous emotional, physical, social and financial burdens on families, leading many couples to seek options to prevent disease transmission to their offspring. Currently, their choices include voluntary childlessness, adoption, using eggs donated by unaffected women or prenatal and preimplantation genetic diagnoses.

I believe that this legislation, Maeve's Bill, is well designed and well considered, balancing the extraordinary potential emerging technologies—and we have a lot of them in this country and across the world—that we have to improve our medical practice and the quality of life for a number of Australian families while recognising the ethical issues that are posed for many Australians and the need to tread carefully through this in a slow and staged process. It is clear that mitochondrial donation can significantly reduce the risk of maternally inherited mitochondrial disease transmission to children. For some families, it proves their only option to have unaffected genetically related children. Here in Australia we certainly have the clinical and the scientific expertise to introduce mitochondrial donation in a highly regulated environment—that is, if Maeve's Law passes both houses of this parliament.

I know there have been contributions over the last couple of days in this place that tell stories of some of our senators who met with families and talked to families about what this means to them. I don't have any knowledge of those families; I don't know the families, but what I know in my heart is that, if my child were affected or a child that I know or, in fact, any child, I believe they have the right to make the decision. Therefore, we should make the law that allows them to have the right to make the decision whether they go ahead with it or not.

I believe that a cautious and staged approach overseen by a licensing committee is appropriate. It flows from deep consideration over several years. I want to acknowledge here the work done by my fellow senators on the Senate Community Affairs Legislation Committee for the inquiry and the report that they produced into the matter in August 2021. There is a long way to go in developing the protocols, the techniques and the understanding of this research, but it does provide real hope to many families across Australia that we know have children with this disease.

I already indicated at the start that I will be voting in favour of this bill. Recognising that these issues are not easy for many members of our community, I am convinced this legislation is worthy of our support and that, ultimately, it will lead, through a careful and staged approach, to a reduction in suffering and disease for children and families, who'll have the freedom to realise their potential and make the fullest contributions to our society and the world. That's something that I think we all want for not only our own children but children in general. We want them to meet the fullest potential that they can.

In my work as a senator, and in my personal life, I've known and provided what support I could to many families dealing with the agony of witnessing the suffering and death of a child from various chronic or genetic illnesses. As I've said, I don't know a family with mitochondrial disease, but I do know of other families with children who have either died or are suffering from chronic and genetic illnesses. I think the opportunity for us to be able to provide the mechanism for those families to make a choice about making that better for their children is something that we should not hold back on. We should allow this bill to pass. Witnessing that same suffering, the deep grief and the same gaping hole in the life of a family and a community when a life is lost, I firmly believe that it is our job as leaders in our community to do whatever we can ethically do to reduce that pain and terrible suffering that parents and families have at the loss of a child. I will definitely be supporting this bill.

(Quorum formed)