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Wednesday, 24 March 2021
Page: 5


Mr HUNT (FlindersMinister Assisting the Prime Minister for the Public Service and Cabinet and Minister for Health and Aged Care) (09:33): I move:

That this bill be now read a second time.

This bill amends the Prohibition of Human Cloning for Reproduction Act 2002 and the Research Involving Human Embryos Act 2002 to make mitochondrial donation legal in Australia.

This bill will allow women to have a biological child in a way that minimises the risk of transmission of the insidious effects of mitochondrial disease, a disease for which there is no known cure at this moment in our history and that leaves children suffering from seizures, fatigue, multiple organ failure and heart problems—in severe cases, even premature death.

Here in Australia, each year around 56 children are born with a severe form of the disease. This equates to approximately one child her week. The tragic prognosis for these children and their families is that many will pass within their first five years.

Five-year-old Maeve Hood is one of these children. Maeve's family—her parents, Joel and Sarah—are amazing. They live within my own electorate, and Maeve's grandfather, Craig, is from my surf club. 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 has a severe type of mitochondrial disease that was diagnosed at 18 months. She's bright, she's bubbly—a beautiful young girl—but she suffers from the most challenging of medical issues. Maeve, thankfully, is still with us, but her family lives with daily uncertainty about the future. As her dad, Joel, said to me this morning, 'Every day for this five-year-old girl is a blessing.' That's why, as a minister, as a father and as an individual; with the passionate support of the Prime Minister, who is patron of the Mito Foundation, publicly and proudly; with the support of the opposition—and Chris Bowen has been a champion in supporting this and has passed that baton to his successor, Mark Butler; with the support of the community; and with the support of people such as Sarah and Joel Hood, and Catherine McGovern from the foundation, we seek to avoid the heartache, pain and anguish of having a child with severe mitochondrial disease.

Advances in reproductive technology now mean that we can help by providing those families at risk of passing on the disease with a pathway to having a healthy child who can live a rich, full and long life. I believe that this bill, Maeve's Law, provides that pathway. It transcends parties, politics or religion; we seek for this to be a unifying moment for Australia. But we do deeply respect all of the different views, which is why the Prime Minister, the cabinet, the party room and the opposition have all agreed to endorse a rare free vote, where people can vote with their conscience and free of their party's position. I believe it's a moment of great honour and integrity for this parliament and a moment of unification where people can differ, but free of rancour.

The science underlying this reproductive technology is complex. It's new—it's not untested, though. Mitochondrial donation is an umbrella term for IVF based reproductive technology which prevents mitochondrial disease being passed from a mother to her child, with the assistance of a donor. Mitochondrial donation cannot, however, be used at this point to cure people with existing mitochondrial disease, nor can it prevent mitochondrial disease caused by an individual's nuclear DNA.

It has been legal in the United Kingdom since 2015 and so we have looked to the experience of the UK in designing this bill. However, we have also carefully considered how this technology can be delivered within the existing frameworks of the Australian health system. To help inform our approach, we have consulted widely in Australia over several years and we deeply respect the differences in opinion, whether it's based on faith or other forms of belief systems that people may have.

In 2018, the Senate Community Affairs References Committee undertook an inquiry into the science of mitochondrial donation. The inquiry examined the impacts of mitochondrial disease and the legal and ethical considerations associated with mitochondrial donation. The final report recommended further consultation with the community, relevant experts and the states and territories before the introduction of this technology into Australia. Over 2019-20 the National Health and Medical Research Council—the NHMRC—undertook a series of consultation activities, engaging with a broad range of experts as well as the broader community.

Together, with lessons learned from the UK, the outcomes from these inquiries have shaped this bill. Both identified significant support for the legislation of mitochondrial donation from clinicians, scientists, families, advocacy groups and the broader community. It was broad, but not universal—I don't seek to say that. But I hope that over time it will be universally accepted.

The bill outlines a carefully staged pathway towards the legalisation of mitochondrial donation in clinical practice. This pathway balances the significant benefits of enabling impacted families access to this new technology and have healthy babies free from severe disease, with both caution and safety provided by an appropriate regulatory framework.

The first stage will initially allow for lab based research and training. 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. This trial will help determine the safety, efficacy and feasibility of the technology preventing serious mitochondrial disease being passed from mother to child.

The trial clinic will need to demonstrate significant experience and expertise in mitochondrial disease and reproductive health. It will also need to demonstrate an ability to provide equity of access to families, have specialised research and clinical facilities and the expertise to provide appropriate support to all participants.

Should the trial find the procedure to be safe and effective, the bill contains an option to move to stage 2, where this new technology will be made available in a broader range of clinical settings for all Australians. However, progression to stage 2 will be subject to a separate decision by government. It will be informed by the outcomes from the trial, expert opinion and further consultations. At this point, states and territories will also have the option of opting in to a national regulatory framework governing the clinical provision of this technology. That second stage through the parliament, certainly with the agreement of both sides, would also be subject to a disallowable instrument that would be in its own right a free vote.

This bill has inbuilt safeguards and protections. It establishes a comprehensive licensing regime to ensure access to this technology is carefully controlled and that the procedure is conducted safely and ethically. Five different categories of licence are provided for in the bill, corresponding to steps within stage 1 and stage 2. Through the process of applying for licences and complying with their conditions, organisations will be closely vetted and carefully overseen by the NHMRC.

The two-stage approach provided for in this bill was outlined in the discussion paper released in February this year. Public consultations on this have just closed. Overwhelmingly, the government heard strong support from experts and from those in the community who engaged in the process.

Some members of the community, as I have noted, legitimately and appropriately within their belief systems have raised concerns about issues such as privacy of parents and children, creation and destruction of embryos, ensuring informed consent, donor rights and the newness of the science. I acknowledge that not all members of the community are comfortable with the use of this technology, and that's reflected in the free vote—the ability to vote with conscience—that has been called for jointly by the major parties.

Ultimately though this bill has been developed in Maeve's honour—on Maeve's law—Maeve Hood. Maeve's law will ensure that other children and parents don't have to suffer the devastating consequences of mitochondrial disease—as Maeve, Sarah and Joel Hood have. Every day we look for hope for Maeve with new science but every day this bill will give hope and provide parents in the future with the option to have their own children free from the burden of this severe disease.

These things happen very rarely in the life of a country or a parliament, so in looking at this there are many people I want to thank for bringing it to this point. I particularly want to thank the parents, the advocates, the clinicians, the Mito Foundation, strong leaders such as Catherine McGovern and, across the parliament, the member for Macarthur, the member for Higgins, my former opposite number Chris Bowen and so many others.

There are some strong leaders in my own office and department that I want to thank for taking this forward. I want to thank Kylie Wright, Jo Tester and Wendy Black. I'm blessed to have such strong leaders in my office. Caroline Edwards in the department is one of the finest public servants that I have ever had the privilege to meet. She is the associate secretary in our department. I want to thank the Prime Minister, who has made this a personal passion. It would have been easy to say no. It would have been easy to say this could have been divisive, but he embraced it, owned it and encouraged it.

At this moment it is incumbent on this government to give Australian parents the choice and opportunity to have children free from severe disease through the use of reproductive technology and to reduce the burden of disease for future generations. It is also essential that we remain at the forefront of advances in both medical science and reproductive technology. We cannot sit by complacently when the health and lives of Australian children are at stake and when the opportunity to provide hope and medical support is now with us.

Ultimately, Maeve's law is about Maeve, but it's also about all the other beautiful children to come who can be protected from this insidious disease. I commend the bill to the House with every fibre of my being.