House debates

Tuesday, 30 November 2021


Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021; Second Reading

6:03 pm

Photo of Josh BurnsJosh Burns (Macnamara, Australian Labor Party) Share this | Hansard source

I begin this contribution on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 by saying that I know that many people on all sides of the House will have deep convictions and strongly held views about the specifics of this bill. This is my personal view that I express, and I obviously respect others who have a different view. In this bill I will be voting to support this legislation and this important reform.

Mitochondrial disease is a disease that is devastating for young children, devastating for parents and devastating for everyone who it touches. One in 200 people, or 120,000 Australians, carry the genetic change or specific genetic nature that potentially puts them at risk of developing mitochondrial disease or passing it on to their children. What this bill does is enable a regulatory arrangement so that IVF or an IVF-style treatment can be used to take the nuclear DNA from a patient's egg which contains the mitochondrial genetic aspect and then place it into a healthy donor egg. Every aspect of the DNA that makes us who we are, passed on by our mother, remains. This is a very, very specific change and very, very advanced technology that gives parents with this small genetic nuance a chance to have a healthy child. That's it. That's all it does. It gives them a chance to have a healthy child.

I had the privilege of working as an adviser in the Victorian government during the voluntary assisted dying debate in Victoria, when the Victorian government and the Victorian parliament legislated voluntary assisted dying. What that bill did was set up a very specific arduous process for someone to go through that awful choice. It was complex legislation. It was very narrow, and it set up a precedent for a difficult yet important framework to facilitate a momentous societal change, and I think that this bill is no different. This bill is specific. It is complex. It is also done in a way that doesn't limit this parliament but reaches for a high standard of legislation to make specific changes to improve the lives of Australians. In this place, if we are not reaching for difficult legislation and if we are not reaching to solve complex issues for Australians, then we are lowering ourselves. This is not an easy issue, but it is my view that bills like this are actually what make this place incredibly important. When we reach to solve problems such as mitochondrial disease, it shines and serves us all well as parliamentarians.

The other thing I'll say is that we, in this place, are truly blessed. We are blessed as people, as parents, as parliamentarians. Our lot in life, each of the 151 members of this place, is pretty darn good. We all have the full function available to us. We all can come into this place and stand up not only for ourselves but for the more than 100,000 people who elected us here. We've all been given a lot in life. That is something that I am extremely appreciative of and extremely grateful for. But the person whom this bill was named after, Maeve, wasn't. The families and the parents of people who carry the mitochondrial genetic nuance are given a much more difficult set of cards. To stand in this place and to give to those parents and to give to those families and, most importantly, to give to those future children that small improvement is a wonderfully generous gift that we could all give. I couldn't be prouder to stand in this place and say that I think we should all give it. I support this legislation.

Maeve is five. She has a difficult journey ahead of her. She struggles to walk. She struggles to talk. This disease is taking away the very things that we all take for granted. She has older sisters, and her parents have shown immense courage in using her story in order to ensure that others don't have to go through the incredibly difficult and challenging journey that Maeve has to.

So I say that I am proud to support this bill, that I am appreciative of all the things that I have been given, that I have a beautiful, healthy daughter who is able to live her life, and I hope she lives a long and prosperous and healthy and happy life. I hope that other Australian kids have the same opportunities that we all have and that we give this very, very small change to give them that chance.


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