Sam McMahon (NT, Country Liberal Party) Share this | Hansard source

In considering the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 a lot of people find it confusing. I'm a veterinary surgeon and a scientist, and even I found it confusing until I delved right down deeply into it. I feel that it's a little bit misnamed—'mitochondrial donation'. People equate it with organ donation. You may decide that, when you die, you want to donate your organs. The person who receives that organ gets that organ. It's donated by you. You've said, 'You can take that from me when I die'—hopefully after you die, not before!—and that person receives that organ and they have it until they pass away. Mitochondrial donation is not a donation as such; it's the taking of genetic material from one cell and putting it in another. It might seem like semantics but when people hear 'donation' I think they equate it with organ donation, which is a very-well-understood and long-practised technique.

I will go into a little bit of the science of it. The mitochondria, as others might have said, are little structures in our cells—they exist in all cells—and they're often described as the powerhouse or the engine room. They're the structures which essentially take what we eat and turn it into energy for the cell to function. Mitochondrial disease is becoming better understood. This is a fairly recent thing in terms of medical research; it's becoming a more-understood disease in recent times. There are various different types of mitochondrial disease. It's basically a dysfunction of the genetic material within the mitochondria, which leads to various manifestations. They can be extremely mild—so much so that the person with the condition doesn't even realise there's anything wrong with them—or they can be quite devastating, leading to the very early death of babies or children or long-term medical effects such as Senator Lines detailed with the case of Pippa. It was very distressing to hear about that case, and I'm sure that no-one would not have sympathy for someone who had to live with such a debilitating disease and a premature death. So that's the basics of what mitochondrial disease can do. It can range from very mild, to not noticeable to the person, to something that is incompatible with life.

What does mitochondrial donation do? You're basically taking a cell from a donor who doesn't have mitochondrial disease—a normal, healthy person. You're taking the genetic material from, in this case, an egg, because most of your mitochondria is inherited maternally—from your mother. That's not 100 per cent cut and dried, but the majority of it comes from your mother. This is generally passed on from mothers to their children. So you're taking two eggs: one from a donor who doesn't have mitochondrial disease and one from the mother who does have mitochondrial disease. You are removing the healthy DNA from the donor and implanting it. You are taking out the DNA that's in the mother with the mito disease and implanting the DNA from that healthy egg in the defective egg. Then you are fertilising it, and then it goes on to hopefully—this is the theory, but, as far as I'm aware, this hasn't been done to produce a normal healthy human—get a normal baby that has the mother's genetic material and the father's genetic material. Only the mitochondria will have the genetic material from the donor. That's the theory of it.

As Senator Lines said, there is no cure and no treatment for this disease. That's true, and this technique isn't a cure or a treatment either. There are actually about five different techniques you can use, and they do vary slightly. I know Senator Canavan is moving some amendments, and some of those go to the different techniques that are used, because there is concern amongst some people that in destroying a zygote or an embryo you are taking a life. I get that. It's not my concern, but I understand that is the concern of many. But the theory is you get this normal embryo, which then hopefully turns out to be a normal person without the mitochondrial disease.

Yes, there is currently no effective treatment and no cure, but there is prevention. There is definitely prevention. This goes to your morals and your ethics and to the question of whether you believe it's a person's absolute right to have a child of their own genetic make-up. I'm not going to argue that. My point of view, personally, is no: having a child is not an absolute right that every single person on the planet has. We all have a lot of things that we have burning desires for. I get that for some people that is having a child that is of their genetic make-up. But there are a lot of other people who have equally burning desires about various things. We know that in life you don't always get what you want. So I would argue that it's not an absolute, government guaranteed right for every single person to be able to have a child of their genetic make-up. But, as I said, that's an ethical and moral debate.

You can currently prevent mitochondrial disease. You can prevent it by diagnosing it in the mother or father, and that's something that I think we need to focus on. I think we're putting the cart before the horse a bit with this legislation, because this would only come into effect if you've been diagnosed with the disease first. So I think we need to put a lot more effort into genetic screening, so that people can know they have this disease—or one of many other genetic diseases—before they make the choice to have a child. I think that's essential because, if you know you have mitochondrial disease, there are a few choices you can make. You can choose not to have a child: 'Children are not going to be for me; I'm not going to have children.' You can choose IVF. You can still have a child that is of your partner's genetic make-up and a donor's, and you can carry that child and give birth to that child, so you have a child that's your child and that you've given birth to. Alright, it doesn't haven't the mother's genetic material, but, as we've seen for many, many years all around the world, that doesn't stop people from loving and raising children, so you've still got that option.

The other option, if you have a burning desire to have a child, is that you can adopt. That's something that I would also like to see more effort put into in this country: facilitating adoptions. There's a whole pile of babies, kids and teenagers out there who would love to have a loving family raise them, and adoption in this country is quite difficult, so I would like to see that facilitated as an option. It's not going to be for everybody, because, as we know, some people have that burning desire: 'This child must be of my genetic make-up.' But, for those who just want a child and can give a child a loving family home and a great life, we should be doing all we can to facilitate that before putting billions of dollars into developing techniques that can potentially give someone a healthy child. Let's not forget that this is potential, because this is still experimental. It concerns me that these laws have been in place in the UK for six years now and we don't have evidence that these techniques can produce normal, healthy children, so that is a bit of a concern. So I think we need to consider how much effort we're putting into these laws and this research compared to other things that we could be facilitating, such as adoption and IVF.

However, having said that, I think it's important that Australian researchers are given the opportunity to conduct world-leading research. It's something Australia does very well. We've been world leaders in a lot of different aspects of medical research. So I think enabling the research and the testing to occur is important. I know one of Senator Canavan's amendments concerns the second phase, if you like, so it allows the research to occur, so Australian medical researchers can start conducting this research in Australia, but it stops short of allowing some minister in some government in the future to make regulations. We're told it will probably be at least 10 years before this goes on to phase 2, with the clinical trials and the clinical application. I'm all for starting the process, not just because this technique could give a family a child of their own genetic make-up but because we really don't yet know what else this research could lead to. It could well be that some of the techniques that are developed with this research at some stage in the future could save humanity. So I really think it's important to start the research and to have legislation that allows that to occur, but I would like to see it stop short of legislating here and now to, as I said, allow some minister from some government at some stage in the future to make up the regulations which will then determine how this is clinically applied.

We've got time. This is not time critical. It is time critical to start the research, but it is not time critical to legislate for the clinical application. We've got at least 10 years and maybe even more. The UK hasn't done much in six years. So we've got time, and we can come back to the parliament in the future. That may be a few years. It may be 10 years. Whatever time frame it is, we can come back when we have the results of the research that the UK is doing and that our own researchers are doing. That can be brought back to the parliament, and the parliament can then make legislation. I certainly would support this bill with amendments, and one amendment that I would really need to see is that we split it. We can go ahead with phase 1, but it needs to come back to the parliament rather than just be delegated to a minister to make regulations on. So that would be a critical thing that I would need to see to support this legislation.