Greg Hunt (Flinders, Liberal Party, Minister for Health and Aged Care) Share this | Hansard source

Free votes are a rare thing in this House. During the course of this debate there have been fine speeches of high intent from those who will vote for the bill, those who will vote against the bill and those who may choose to abstain. Whether it's been the member for Hindmarsh, the work of the member for McMahon, who began this journey with me some years ago, the words of the member for Robertson or those of the member for Mayo, whose speech was truly beautiful and agonising at the same time with the story of her grandson, or whether it's been the member for Menzies, who will take a different position to myself and others, this has been the parliament at its absolute finest.

This bill has been named in honour of Maeve Hood and the tireless work of her family to raise awareness and build support for those people in our community who are suffering from mitochondrial disease. It's been named the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 as a consequence.

Maeve is a young child who suffers from a type of severe mitochondrial disease, which means that she can't talk and she can't walk independently. It also means, heartbreakingly, that she may not see an adult future, and that time may come earlier. Despite these incredible challenges, she is a fiercely loved family member—a little sister, a daughter, a niece and a grand-daughter. Her family describe her as the most beautiful and sensitive little girl. However, even with the challenges they face, Maeve's parents, Sarah and Joel, are paving the way for other families to avoid their heartache and to have a biological child who does not suffer the debilitating effect of this disease. This is what Maeve's law is designed to do, and this is what Maeve's law, if passed, will help achieve.

Maeve's law will create this pathway through amendments to the Prohibition of Human Cloning for Reproduction Act 2002 and the Research Involving Human Embryos Act 2002. These amendments will harness new assisted reproductive technologies that will provide parents with the option to have their own biological child while minimising the risk of transmission of mitochondrial disease, a disease that can be agonising, be debilitating and lead to children losing their lives at a young age. These technologies fall under the umbrella of 'mitochondrial donation', a term that encompasses IVF based assisted-reproductive technology. With the help of a donor it minimises the risk of a mother passing mitochondrial disease onto her child. It is new and it is complex, but it is not untested. Under stage 1, mitochondrial donation will be legislated for lab-based research and training purposes. This will be followed by allowing some families to access the technique as part of a trial at one carefully selected licensed and Commonwealth funded clinic. Making this technology more readily available in a range of clinical settings within stage 2 will be subject to a separate decision of government. This decision will be informed by the success of stage 1, expert opinion and community consultation.

In developing Maeve's law we have looked to the experience of the United Kingdom, where mitochondrial donation was legalised in 2015. We've also had close regard to the outcomes of the 2018 inquiry by the Senate Community Affairs References Committee and to consultations undertaken by the National Health and Medical Research Council over 2019 and 2020. The development of this bill has been informed by the government's direct consultations. We have engaged extensively with experts, scientists, clinicians and researchers, members of the community more broadly, advocacy groups, our state and territory counterparts and, fundamentally, families such as that of Sarah and Joel Hood. In particular, we have worked with the opposition and the crossbench. I thank especially, at a personal level and within the context of the parliament operating I think in its finest way, the member for McMahon for his support right from the outset to see this bill through in a way which would give it its best chance for success—and his work has been carried on by the member for Hindmarsh.

Collectively, this input of government, opposition and crossbench—the member for Mayo has been such a strong and passionate advocate, and the member for Higgins has been a fine champion of this bill—and this input of the parliament, expertise and direct experience has shaped the introduction of this technology through a careful two-stage process. I acknowledge and respect that not all members of the community and this parliament are comfortable with the use of this technology, and that is why a free vote, a conscience vote, a rarely drawn upon collective mechanism, is being used on this bill and has been allowed by both the major parties.

While this government is committed to providing families with access to this technology, it is also committed to ensuring it is delivered safely and effectively every step of the way whilst respecting the space and scope for difference of opinion. For this reason, Maeve's Law has in-built protections and safeguards. The bill provides for five different types of licences, with corresponding steps in stages 1 and 2. Each of these licences will require an application to the NHMRC, which, after careful vetting, will then closely monitor the activities of that specialised clinic.

In honouring Maeve, the bill offers hope. It offers hope to those parents who wish to avoid the possibility of passing on severe mitochondrial disease to their biological children—a disease that leaves one baby born each week with disabling suffering and with a life that will likely be cut short at five to, potentially, 10 years at most. It offers hope in the same way that IVF has now led to 15,000 children being born in Australia. There wouldn't be a person in this chamber who has not been touched by the gift that is IVF in one way, shape or form. This is the evolution of IVF. Maeve's Law will help bring the suffering to an end. It will provide the pathway that gives parents the opportunity to have biological children who are free from severe mitochondrial disease and gives children the best possible start in life.

I wish to thank key stakeholders, as I have done. I particularly want to thank the Mito Foundation and all those involved—Sean and Catherine—and the many, many families who have made representations to parliamentary representatives, whether in the House or in the Senate. I thank everybody for their contribution. I also thank all members who have spoken and all members who have sought information in their deliberations and during the debate on this bill. I particularly thank the Senate Standing Committee for the Scrutiny of Bills for their review and their concerns—and I note that their concerns are addressed in the addendum to the explanatory memorandum, and I note that we have replaced figure 1 on page 67 to provide more clarity. I now table the addendum to the explanatory memorandum.

I thank everybody, but above all else I thank all those families who have helped bring this parliament to this moment. I respect the views of all, but, ultimately, my hope and my belief is that this House will see fit to pass this bill to give hope to Maeve's parents and to give hope to all parents. I commend the bill to the House.

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