Simon Birmingham (SA, Liberal Party, Minister for Finance) Share this | Hansard source

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 suffering from mitochondrial disease. It has been named the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. Maeve is a young child who suffers from a type of severe mitochondrial disease. She can't talk. She can't walk independently. It also means, heartbreakingly, that she may not see her next birthday. Despite these incredible challenges, Maeve is a fiercely loved family member—a little sister, a daughter, a niece and a granddaughter. 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 effects of this disease. That's what Maeve's Law seeks to achieve through a carefully crafted process. 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.

These technologies fall under the umbrella of mitochondrial donation, a term that encompasses IVF based assistive 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 legalised 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 the technology more readily available in a range of clinical settings within stage 2 will be the subject of 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 experiences of the United Kingdom, where mitochondrial donation was legalised in 2015. We have also had close regard to the outcomes of the 2018 Senate inquiry and consultations undertaken by the National Health and Medical Research Council over 2019-20.

The development of the bill has been informed by the government's direct consultations. There has been extensive consultation with experts, scientists, clinicians and researchers, members of the community more broadly, advocacy groups, ethicists, our state and territory counterparts and, fundamentally, of course, Sarah and Joel Hood. Collectively, this input, expertise and direct experience has shaped the introduction of this technology through the careful two-stage process proposed.

I acknowledge that not all members of the community or this Senate are comfortable with the use of this technology. That is why a conscience vote is being called on the bill. While our government is committed to providing families with access to this technology, we are also committed to ensuring it is being delivered safely and effectively every step of the way. For this reason, Maeve's Law has inbuilt protections and safeguards. The bill provides for five different types of licenses, with corresponding steps in stage 1 and stage 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, this bill seeks to offer 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 around five years of age at most. Maeve's Law will help to bring an end to this suffering. It will provide the pathway that gives parents greater certainty of opportunity to have biological children who are free from severe mitochondrial disease and for those children to have the best possible start and opportunities in life.

On behalf of the government, I thank the key stakeholders and the broader community for their valuable feedback during the public consultation, which has been immensely important to inform the development of this bill. I also acknowledge the personal work of the minister for health, Mr Hunt, and indeed the commitment of the Prime Minister in his work with those who have been affected by mitochondrial disease in seeking to bring this reform to the parliament. I thank senators for the various thoughtful, heartfelt contributions that have been made from different perspectives around the chamber, but I do commend this bill in its presented form to the chamber for passage. I thank the Senate.

Question agreed to.

Bill read a second time.