Carol Brown (Tasmania, Australian Labor Party, Shadow Assistant Minister for Infrastructure and Regional Tourism) Share this | Hansard source

I'm very pleased to be able to make a contribution today on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021, the purpose of which is to legalise mitochondrial donation for particular research, training and reproductive purposes. The bill also amends the Prohibition of Human Cloning for Reproduction Act 2002 and the Research Involving Human Embryos Act 2002. The bill also seeks to introduce many safeguards.

I would first like to thank Dr Mike Freelander, the member for Macarthur, for providing me and other colleagues with his insights into the bill and for distributing the research paper on mitochondrial transfer produced by Oliver Hervir, an intern from ANU working in Mike's office. I also acknowledge the advocacy and determination of the Mito Foundation.

From time to time, those of us entrusted to serve in this place have the privilege and the responsibility to be able to support meaningful change that has the potential to dramatically improve people's lives. The bill before us today is one such opportunity. Under the bill, mitochondrial donation will be introduced in a staged and closely monitored way. The first stage allows for certain research and training purposes, including the undertaking of a clinical trial.

The bill before us has been a long time in the making. It's been nearly five years since the production of the 2018 Senate Community Affairs References Committee report recommending that some further consultation should be undertaken with the community and relevant experts. In response to the Senate report, the National Health and Medical Research Council, the NHMRC, undertook a series of community consultations to seek community attitudes to the ethical, legal and social issues associated with introducing mitochondrial donation in Australia. The NHMRC also convened an expert committee to review key scientific questions raised by the Senate inquiry. The NHMRC and the Senate inquiry identified significant community support for legalising mitochondrial donation for use in Australia. The consultation also identified concerns about the technology. In February 2021, the health department released a public discussion paper seeking feedback on a proposed two-stage implementation approach. Public consultation, which concluded in March 2021, identified support for the proposed approach.

The change that this bill seeks to make is significant, but, in my view, it's a change that we, as the parliament, should endorse. The change will make a big difference to families. It's been a long time coming, as I've said, and I'm sure many passionate advocates are listening in today, filled with much emotion. Today, I hope, is your day. I hope that, at the conclusion of this debate, you'll be able to celebrate a well-deserved achievement. I'm sure you were as heartened as I was when the bill passed the House of Representatives with a significant margin—92 votes to 29.

As we know, this bill has been appropriately dubbed 'Maeve's law'. I want to acknowledge and pay tribute to a brave and special young girl, Maeve Hood, and her family. As we know, Maeve was diagnosed with a severe type of mitochondrial disease, Leigh syndrome, at 18 months of age. Maeve's mum and dad, Sarah and Joel, have been tireless advocates for the law reform needed to allow for the use of IVF technology that can prevent mitochondrial disease. This advocacy will have undoubtedly taken its toll. It's never easy talking so frequently about something so personal, more so about someone you love, especially your own child. I would like to pay tribute to them and acknowledge their pivotal role in making this much-needed change happen.

But they're not the only ones. There are so many people—parents and their children—in the Australian community who have experienced the ravages of a rare genetic disease and who have shared their stories to bring this issue to the attention of policymakers. Your passion, commitment and advocacy has meant something. It has led to this day. It has worked. The passage of this bill through this place will allow women to give birth without passing on a genetic disease. This will be enabled through making a mitochondrial donation process lawful. When necessary, a pregnant woman will be able to replace their own mitochondrial DNA with healthy mitochondrial DNA from a donor egg from another woman.

It has been estimated that as many as 56 babies born each year in Australia could potentially be saved from inheriting mitochondrial disease with the passage of this legislation. Indeed, one Australian baby who will develop a severely disabling form of mitochondrial disease is born every week. That's according to the Mito Foundation, which works to enrich the lives of people with mitochondrial disease and has led much of the research, policy work and calls for law reform and funding to enable IVF mitochondrial donation. Sadly, most children diagnosed with mito die in the first five years of life. There is no cure and there is no real treatment. The Mito Foundation estimates that one in 200 people, or 120,000 Australians, carry the genetic change that puts them at risk of developing mito or passing it on to their children. This bill would dramatically change the lives of these Australians, should they have children.

A series of amendments were made to this bill in the other place and were well received by advocates, the medical profession and the medical research profession. The amendments addressed concerns raised by the Senate Standing Committee for the Scrutiny of Bills around what the committee saw as a lack of clarity in some provisions of the bill. The committee did not seek to change the function or intent of the bill. It is pleasing to see the government act constructively in pursuing these amendments to this bill, and I must acknowledge here the work of the Minister for Health and Aged Care, Mr Hunt.

The amendments agreed to in the House provide greater clarity and privacy protections without changing or impacting the intent or substance of the bill. In particular, the amendments clarify that donated mitochondria must be sourced from human eggs; expand and clarify the circumstances in which proper consent is needed before mitochondrial donation techniques are used; clarify the circumstances in which the Embryo Research Licensing Committee is able to seek expert advice when performing its statutory functions; enhance mitochondrial donor privacy through provisions relating to the register; and further enhance privacy by ensuring that the ERLC's statutory reports to parliament cannot disclose identifiable personal information. I welcome these changes, and I welcome this bill.

The passage of this bill provides Australian parents affected by mitochondrial disease with a choice to minimise the risk of their children inheriting this life-threatening disease. I will be voting for the passage of this bill to allow parents to have that choice, and I sincerely hope this bill is successful and becomes law. I commend the bill to the Senate.