Sarah Henderson (Victoria, Liberal Party) Share this | Hansard source

I want to begin my contribution by conveying my condolences to Senator Keneally. I wasn't aware of her loss, and I just wanted to say that I'm very, very sorry to hear your story.

Severe mitochondrial disease can have a devastating effect on families, including through the premature death of children; painful, debilitating and disabling suffering; long-term ill health; and poor quality of life. Approximately one child each week is born in Australia with a severe form of mitochondrial disease and often with a life expectancy of less than five years. Mitochondrial diseases are difficult to diagnose, and there is currently no known cure. Treatment options are limited and largely concern the management of symptoms. More severe forms of mitochondrial disease can have a devastating effect on families who prematurely lose children to the disease, and children who survive will often suffer from long-term ill health and poor quality of life. In Australia, approximately 56 children each year are born with a severe form of mitochondrial disease, and most will die within their first five years.

The Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 will assist those families affected by severe mitochondrial disease to use technology—assuming, of course, that the research and development stacks up—that will enable them to have biological children without passing on this debilitating illness. As we have heard in this debate—and this is the parliament at its very best, with a respectful debate about an issue of conscience, where all senators have the ability to express their deeply felt personal views—this is a very difficult issue. Mitochondrial donation is an assisted reproductive technology that, when combined with IVF, has 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. It involves a complex process to create an embryo which includes nuclear DNA from the man and the woman—the prospective mother—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.

The government's laudably narrow proposal is that mitochondrial donation in Australia be implemented in a two-stage process—and this is very important—which will provide for a cautious introduction of the technology. The first stage involves legalising mitochondrial donation for use in research settings and for reproductive purposes through one carefully chosen organisation subject to an extensive monitoring regime by the Embryo Research and Licensing Committee. The second stage involves permitting mitochondrial donation in clinical practice more broadly. This conservative approach brings Australia into line with the approach undertaken by the UK, where mitochondrial donation has already been legalised for the purpose of minimising the risk of transmitting serious mitochondrial disease from a mother to her child.

The government has consulted extensively on this bill with experts, scientists, clinicians and researchers as well as members of the community and advocacy groups. Notwithstanding its benefits, I recognise that mitochondrial donation raises vexed and very difficult ethical and moral questions about the modification of the human genome and the use of embryos purely for research and training, and that is why, of course, the government has rightly allowed a conscience vote on this issue.

Senator Keneally referenced IVF technology, and I'm very conscious that without IVF technology and all of the research and development into that technology thousands upon thousands of children would not have been born in this country, and of course that would probably run into millions around the world. IVF technology involves the creation of embryos, some of which are knowingly destroyed. That obviously is an ethical dilemma that each and every one of us has to grapple with. For me, I believe that IVF technology has been a game changer for this country and for thousands upon thousands of families, and investing in the research and development has changed the lives of so many Australians. For my part, I believe that the benefits of allowing mitochondrial donation outweigh the risks. Mitochondrial donation will not result in three-parent IVF, as has been contended. Children born using this technology still have only one father and one mother. The female donor contributes only healthy mitochondria and no more. No genetic material involved in the personality of the child and the characteristics of the child is inherited from the mitochondrial donor. Moreover, the bill expressly prohibits gene editing of either the nuclear or mitochondrial DNA of the child.

Donor rights and responsibilities for Australian mitochondrial donation egg donors will be largely aligned to current assisted reproductive technology regulations, such that these donors will not be considered parents for the purposes of the Family Law Act, and children conceived with the assistance of mitochondrial donation will have the right to apply for identifying information about their donor when they turn 18 years old.

I believe in my conscience the bill goes as far as is necessary to allow potentially life-saving technology to be used for the benefit of our children without spilling into the very murky ethical territory of human gene editing. I do also want to note that Senator Canavan has just provided me with some more information in relation to amendments that he intends to move, and I will, in good faith, consider those amendments as part of this debate, but I will be voting for this bill. I commend the bill to the Senate.