Claire Chandler (Tasmania, Liberal Party) Share this | Hansard source

I rise today to provide some remarks on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021, known as Maeve's Law. In doing so, I would first and foremost like to extend my gratitude to my colleagues from all sides of this chamber and in the other place for approaching this debate in such a respectful manner. This is a complex piece of legislation which attempts to tackle a complex issue, and I recognise that there are a broad range of views, which have been raised throughout this debate. Our ability to do so in this place in such a considerate and measured way is a testament to this parliament.

This bill amends a number of existing pieces of legislation to allow for the introduction of mitochondrial donation in Australia for the purposes of research and, eventually, human reproduction under a national regulatory framework. The ultimate aim of this is to develop the technology to prevent the passing on of mitochondrial disease to future generations.

Mitochondrial disease, or mito as it's colloquially known, occurs due to mutations of mitochondrial DNA or nuclear DNA which impact the function of mitochondria, the part of every human cell that contains DNA. It manifests in a variety of symptoms, which can become apparent very early on in a child's life, including seizures, developmental delays, fatigue and muscle pain, vision and hearing issues, potential organ failure and, sometimes, death. There are currently no known cures. I've met with sufferers of mito, and there is no denying the significant pain and despair that they must endure because of this horrible disease. You can see it on their faces, in the visible pain they're experiencing just by doing the things that other people take for granted—going for a walk, drinking a cup of coffee, sometimes even just sitting upright in a chair. Mitochondrial disease is hereditary, and in the vast majority of cases this occurs through the mother. While it can vary depending on the genetic make-up of both parents, generally speaking, by my measure there's a 25 to 50 per cent chance that faulty mitochondrial DNA will be passed on to a child. If both parents have the gene that chance is effectively 100 per cent.

This bill enables a framework to research and, potentially, implement the use of mitochondrial donation so that a family with a genetic predisposition to the disease may have a healthy child. This practice was legalised in the United Kingdom in 2015 and involves the transfer of genetic material extracted from a mother's egg and the placing of that material into a donor egg which has its own genetic material removed but retains its own intact mitochondria. Under the framework proposed in this bill, the initial egg can be fertilised before or after the mitochondrial donation has occurred.

I'm not going to stand here today and assert that it was easy to decide whether to support this bill, because it wasn't. The concept of mitochondrial donation engages a number of different ethical questions, not least because we are attempting to regulate here something that is an incredibly new and not especially well-tested technology, and I note that many of those questions have been traversed and pondered by my colleagues in their contributions. But the key question for me personally is: do those questions and concerns outweigh the possibility of protecting future generations of children from inheriting this insidious disease? To be very clear, I worry about what might come next, and we in this place should never pretend that our actions in legislating today have no bearing on what might happen in a year or in five, 10 or 50 years time, because, of course, they do. I also worry about the untested nature of some of these technologies and what other health concerns might result from this fusion of DNA, because we have very limited data from the United Kingdom—where mitochondrial donation has been legal—as to what the long-term health prospects of such children might be. I was particularly worried about this bill allowing parents the ability to only implant male embryos. I sincerely congratulate my colleagues in the other place on amending this bill to remove the option for sex selection.

These are all genuinely held concerns and, judging by the correspondence I've received from many Australians about this legislation, I know that these concerns are held not just by me. But then I think about the concerns of those Australians who are suffering from mitochondrial disease, and particularly those sufferers who wish to have a child free of the debilitating ailments that they themselves have had to endure. I'm not a mother myself, but, obviously, I know plenty of women who are. I also know plenty of women who have struggled through infertility and miscarriage and the inevitable heartbreak that comes from not being able to have a child. And, as a woman, I don't think I can come into this place and deny other women—those who may be carriers of mitochondrial disease—the possibility of having a healthy child. And that's what this legislation provides.

I'm glad to see the further amendments made to this legislation in the other place, which have increased reporting requirements and safeguarding to the regulatory scheme for this research, and I will certainly be considering on their merits any further amendments which may be moved by honourable senators to that same extent. But, regardless of the success of any further amendments, I will be supporting this bill. And I hope that in future years we can confidently say that no Australian child will be born with the tragic burden of suffering from this awful disease.

(Quorum formed)