Louise Pratt (WA, Australian Labor Party, Shadow Assistant Minister for Manufacturing) Share this | Link to this | Hansard source

I seek leave to submit a contribution from Senator Wong to be incorporated into the Hansard.

Leave granted.

The document read as follows—

I support the passage of the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021.

In recent months, I have been contacted by so many people urging support for Maeve's Law: parents suffering the tragic loss of a child from mitochondrial disease, their advocates, and even researchers dedicated to avoiding these tragedies.

It is impossible not to be moved by their stories.

I want to mention one South Australian mother who wrote to me, Suzie, who lives in the Adelaide Hills.

While her community was being devasted by the Black Summer bushfires, she was suffering an additional heartbreak, as her baby Dot succumbed to mitochondrial disease.

Courageously, she has turned her grief into powerful advocacy, raising awareness of a disease that can be incredibly serious for young children. I want to thank Suzie for sharing her story with me, acknowledge her work, and the work of everyone advocating for Maeve's Law. I also acknowledge the contributions of my colleagues who have held the Health portfolio in recent years - Ms King, Mr Bowen, Mr Butler - and indeed the Minister for Health, who have all helped get us to this point.

Suzie's heartbreak is all too common. On average at least one baby is born every week with severe mitochondrial disease, and most of those babies will die within the first five years of their life.

The Mito Foundation estimates that one in 200 people in Australia carry the genetic change that puts them at risk of developing mitochondrial disease or passing it on to their children.

Understanding how mitochondrial disease works explains why we can't overcome it without Maeve's Law.

Mitochondria make energy within the body's cells, meaning they are critical for cell survival. Mitochondria have been variously described as the powerhouse or battery pack of a cell. Mitochondria have their own mitochondrial DNA, and mitochondrial disease can be caused by mutations in the mitochondrial DNA or in nuclear DNA.

The effects of mitochondrial disease can vary considerably, from mild to life threatening.

It mostly affects the parts of the body that require the most energy - like the brain, muscles, kidney and heart. In some cases the symptoms can be managed, but in serious cases there is no effective treatment, and there is no cure.

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 have a child without that disease.

A number of colleagues have described the two techniques at length, so I will summarise with a quote from my colleague in the other place, Mr Butler, who said:

" … These techniques these techniques use the donor's egg, which is not particularly novel a well -known technology and the donor's mitochondrial DNA. The donor's nuclear DNA that is, all of the DNA that goes to make up what we'd understand to be the unique characteristics of the donor as a person; their appearance, their personality, their intellect a nd so on is removed from the egg and it is replaced by the nuclear DNA of the mother. So all of those characteristics that we would understand to be inherited from our mothers all come from, all flow from, the nuclear DNA. And that nuclear DNA from the mo ther is inserted into the donor's egg along with the battery pack, along with the mitochondrial DNA. That is a very important distinction between the nuclear DNA and the mitochondrial DNA."

As it stands, these donation techniques are currently prohibited.

Maeve's Law - or its more formal title of the Mitochondrial Donation Law Reform Bill 2021 - will legalise mitochondrial donation for particular research, training and reproductive purposes. It introduces safeguards to ensure that the techniques are safe, effective and properly regulated, and to protect the privacy of persons who make use of these techniques.

It will introduce mitochondrial donation in a staged and closely monitored way, first focusing on research and training, and the second stage commencing when regulations are made prescribing donation techniques for use in clinical practice. Before that could occur in any State or Territory, that State or Territory would need to enact its own laws authorising the use of the technique.

I understand there are some in our community who hold genuine concerns that this Bill presents risks - that it is a pathway to designer babies and gene editing.

I urge those who have such concerns to read the excellent publications produced by the Mito Foundation or the comprehensive report of the Senate's Community Affairs References Committee which conducted an inquiry in 2018 into the science of mitochondrial donation and other matters - and I thank my colleagues Senators Keneally, Pratt and Watt for their hard work on that inquiry.

Their work affirms that mitochondrial donation works by preventing the transmission of mitochondrial DNA diseases to a child by creating an embryo with nuclear DNA from the intended mother and mitochondrial DNA from a donor.

It does not contribute to a person's genetic identity because mitochondrial DNA only provides energy to the cells - unlike nuclear DNA which is responsible for a person's physical and cognitive characteristics. In other words, a recipient of donated mitochondrial DNA will not resemble the donor.

My contribution to this debate is as a private senator; this is a conscience issue for both major parties.

In voting their conscience, I urge all senators to evaluate the work our colleagues have done on this issue, and consider the terrible grief suffered by too many Australian families and facing the tragic loss of young Australian lives.

Simon Birmingham (SA, Liberal Party, Minister for Finance) Share this | Link to 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.