Katie Allen (Higgins, Liberal Party) Share this | Hansard source

We've heard many incredibly moving speeches this evening. I would like to thank the speakers before me for the contributions they have made, including the member for Dunkley for her contribution, and to add my voice to supporting this bill, the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. As we've heard, each week in Australia one baby is born with a severe genetic disorder called mitochondrial disease. It's a largely inherited genetic disease. The prognosis for these children, the ones with severe mitochondrial disease, is that most of them will die within their first five years of life—in fact, most in their first year or two.

I remember learning about this condition in a textbook as a young medical student. It sounded horrible:

Leigh syndrome is a severe neurological disorder that usually becomes apparent in the first year of life. This condition is characterized by progressive loss of mental and movement abilities (psychomotor regression) and typically results in death within two to three years, usually due to respiratory failure.

That is very clinical, very cold and very factual. But as a young paediatrician I saw that the reality is not just horrible; it is devastating. It's a devastating condition. It is devastating for the infant; it's a horrible way to die. It is devastating for the parents as they struggle with diagnosing a puzzling set of symptoms.

Imagine picking up a child that, over days, weeks and months, becomes progressively floppy. A baby that might once have rolled stops doing it. First the parents are a little worried. They go and see a doctor. They become increasingly worried. Strange things are happening. They're confused. They seek help from different specialists. It's not a particularly common set of symptoms and conditions. They can see many doctors before it is finally diagnosed. And the diagnosis itself is completely devastating, not just for the family but also for the friends around that family and for the community.

I can tell you that the conversation you have as a paediatrician is the hardest conversation you can have. It's a conversation that you know will profoundly change the lives of these people sitting in your room. You know it's going to change not just the life of that child but the lives of their siblings, parents, grandparents, aunties, uncles, cousins—everybody. We are trained as doctors to be caring and supportive and to break news gently. But you know, as that doctor, that the minute you say what is essentially a death sentence they can't hear anything else. It's like a white wall comes down; they're not going to hear anything, so there's not much you can do to make the conversation easier. You do all you can to try and make it as gentle as possible, but it is an awful thing to have to deliver to a family.

Many of us probably know someone who has lost a child. It is indeed a parent's greatest fear. In fact, I said in my first speech that there are words, like 'widow' and 'orphan', that articulate and describe our loss. But there is no word in the English language for the loss of a child. In fact, I've yet to find a language anywhere in the world that in fact describes that, because it is almost unimaginable. It is not something we want to be able to describe. It's a devastating loss.

So you can imagine how much devastation families experience and how there are so many wonderful people who have taken this grief and converted it into a drive to provide hope for others. They have taken a loss, a pain that will never go away, that will never really dull, and they have used that for the betterment of others, to try to provide hope to those who have had to deal with pain, this loss, this suffering and this grief. We heard earlier this evening the deeply moving speech by the member for Mayo, whose family has been affected by this condition and its devastating outcome. Then there are also people like Maeve, for whom this bill is named, and her family. That's essentially why we are all here today.

I would like to thank the Minister for Health and Aged Care, the Hon. Greg Hunt, for chaperoning this bill through careful processes that engaged parliamentarians throughout the chamber and across the divide in a careful, supportive way that allowed people to come on the journey of discussing what is an incredibly profound decision that this parliament will be making. I think it is wonderful that we are to be given a conscience vote. I know there are many people who have struggled with making decisions around what is an incredibly important form of legislation.

The purpose of the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 is to amend existing legislation to allow for mitochondrial donation to be introduced into Australia for research and human reproductive purposes. This bill will allow women whose children would otherwise be predisposed to severe and life-threatening mitochondrial disease to have a biological child who will not inherit that predisposition. For those predisposed to this genetic disease and who carry this genetic disorder, if the bill passes, they will now have the hope that they can process a mitochondrial donation to limit some of the risks of having a child, or having another child, with mitochondrial disease.

Mitochondrial donation is in effect an assisted reproductive technology that, when combined with invitro fertilisation—and I make note of the fact that Australia has been incredibly world-leading in the area of invitro fertilisation, commonly known as IVF—will provide the potential to allow women whose mitochondria would predispose their potential children to mitochondrial disease to have a biological child who does not inherit that predisposition. The technique is a complex process to create an embryo which includes nuclear DNA from the man and the woman seeking to have a child and mitochondrial DNA from a different woman, the mitochondrial donor. Mitochondrial donation can therefore minimise the risk of transmission of the prospective mother's mitochondria and, in doing so, aims to prevent future generations from inheriting these severe and debilitating diseases.

To explain this more simply, we all have mitochondria in our cells. They are essentially the batteries of the cell. They are the energy stores of the cell. Those suffering from mitochondrial disease have faulty batteries. It is a bit like this: if you think about a chicken's egg, there is the yolk in the middle, which is the nucleus, and then there is the white part, which is the cytoplasm. In that, there are little batteries that are the mitochondria. Mitochondrial donation, however, cannot be used to cure people with existing mitochondrial disease, nor can it prevent mitochondrial disease caused by changes occurring in an individual's nuclear DNA. So this is specifically to do with mitochondrial DNA.

I'd like to address the report that sometimes raises its head in the media that mitochondrial donation is 'three-parent IVF'. This is not an accurate description of mitochondrial DNA. In fact, it's unfair. Children born using this technology still have only two biological parents: a mother and a father. That is because these children will inherit their characteristics and personality traits from their biological parents through their nuclear DNA—the egg yolk of the fertilised egg. A female donor involved in the mitochondrial donation process only provides healthy mitochondria—only the batteries of the cell. While mitochondrial donation techniques result in change to the genome, they do not involve gene editing of either the nuclear DNA or mitochondrial DNA, which has been expressly prohibited by this bill. To put it simply, the donor does not affect the colour of a child's eyes, hair or the like. It's only the parents who will provide those heritable traits to the offspring.

A two-stage implementation approach is proposed to introduce mitochondrial donation in Australia. Stage 1 will see mitochondrial donation initially legalised for certain research and training purposes and to support selection and licensing of pilot programs to deliver the mitochondrial donation for impacted families. Under stage 2, mitochondrial donation would be permitted in clinical practice more broadly, after results of the pilot program. This provides that the necessary checks and balances are in place. Under both stages of the program implementation, the use of specified mitochondrial donation techniques would be subject to strict licensing and regulatory conditions, which would be overseen by the Embryo Research Licensing Committee of the National Health and Medical Research Council, which is a very esteemed body, extremely careful and diligent in the processes that it undertakes, and has its own very careful framework in which to assess these things. This will mean that the Embryo Research Licensing Committee of the NHMRC will be expanded under the bill to include licensing and oversight of research and training licences, a clinical licence for the initial pilot site, and future clinical practice licences using mitochondrial donation techniques. Approval of individuals seeking access to the treatment will also be required and will be based on clinical recommendations. That means doctors will need to assess whether the patient and family are in need of this technique.

The bill also aligns to other Australian laws preventing exploitation and incentivisation for donors. I repeat: this is a very important law within Australia because in other countries there is permission for certain sorts of incentivisation, which can lead to exploitation of donors for donor organs and suchlike. But in Australia we operate under a very important ethical framework, and it's very important to make sure that there's a separation of these sorts of procedures from any form of recipient of funding or financing.

Donor rights and responsibilities for Australian mitochondrial donation egg donors would be largely aligned to current artificial reproductive technology regulations. This would include that mitochondrial donation egg donors would not be considered legal parents, in line with current ART—or artificial reproductive technology—sperm and egg donors, under the Family Law Act 1975. This is very important. Children conceived with mitochondrial donation would have the right to apply for identifying information about their donor only when they turn 18 years of age, as is the case for other sperm and egg donation. Donor eggs may be provided voluntarily from family members, from friends or from individuals who agree to donate eggs or have eggs that are excess to their own needs in IVF clinics.

Not only as a member of parliament or as a paediatrician but as a parent—having four beautiful, healthy children—I ask that all members take a moment before voting on this bill. Put yourself in the shoes of a parent who carries these genes, or a parent who has a child who suffers from mitochondrial disease, or even a parent who's tragically lost a child prematurely to this disease. Often we find, as doctors, that people have one view until it happens to them or their family members. It's very powerful to understand living in someone else's shoes. So I ask members opposite who may be unsure about this: put yourself in the shoes of others, speak to the experts and make sure your questions are addressed before you make this conscience vote. We all have the power to unite on this and deliver hope for a future without this cruel disease. I commend the bill to the House.

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