Mr Tony Burke (Watson, Australian Labor Party, Shadow Minister for the Arts) Share this | Link to this | Hansard source

on indulgence—Following conversations with the Leader of the House, I just want to report that for the remainder of the debate this evening there is an agreement that there will be no quorum calls and no divisions, and a guarantee from the opposition that there will be no procedural motions moved.

Chris Hayes (Fowler, Australian Labor Party) Share this | Link to this | Hansard source

I am in continuation. Given that this bill is modelled on the legislation introduced in the United Kingdom, it's worth looking at what progress has been made in the six years it has been in operation. As I understand, only one clinic in the UK has been authorised to conduct research into mitochondrial donation technology, and 21 couples have received treatment. However, I am advised that, due to privacy reasons, we cannot be provided with any information as to the outcomes of these cases. I find that absolutely extraordinary, given that we have been invited to pass legislation based on the UK model itself. I don't expect the names, the ages or the locations of people, but information as to how many viable pregnancies and births have resulted from mitochondrial donation or how many embryos have had to be destroyed to achieve the favoured result would be understandably useful information in considering arguments on advancing these technologies. But there is none.

The only reports of successful births as a result of mitochondrial donation procedure have come out of Mexico and, of all places, the Ukraine. Neither of these countries has explicitly legalised the procedure. There are no reports in the Lancet, and, as I understand it, they are not considered as legitimate examples by any international medical research authority. I note the United States has prohibited clinical trials into mitochondrial donation on the grounds that it constitutes genome editing and, as such, presents an unacceptable risk. Similarly the World Health Organization has indicated its opposition to making modifications to the genetic code in humans capable of being passed on to future generations. Therefore we have no compelling information as to the types of methods that have been used in these British cases, and little or nothing about the success or otherwise as to the methods being an assistive reproductive technology. Particularly when the procedures necessitate the destruction of embryos, simply lining up to pass legislation without sufficient evidence or any real idea as to its effectiveness or its prospects of success is, I believe, just not good enough.

In 2006 this House debated whether therapeutic cloning through the use of human embryos should be permitted. I said at that stage that an embryo should be afforded the same respect from the moment of creation regardless of the method, intention or age. My position remains the same, unless it can be clearly shown that there are real and substantial benefits to humanity itself that may outweigh that ethical opposition. I'm not opposed to mitochondrial research or all the associated donation technologies. Clearly, we need to be working towards ways to mitigate the risk of children being born with mitochondrial diseases. I believe the maternal spindle transfer may be one of those ways, and I would be prepared to support legislation that allows this technique going forward. However, to support methods that would require at least one human embryo being destroyed at every try, successful or not, is a bridge too far for me.

I understand my position is going to disappoint some people. But, ethically, I cannot support clinical research or practices involving these human embryo technologies. I will exercise my conscience vote to vote against the bill as it presently stands.

Jason Falinski (Mackellar, Liberal Party) Share this | Link to this | Hansard source

Firstly I'll start by saying that I hold the Chief Opposition Whip in the highest of respect and regard. I think that his contribution to this debate needs to be understood in the way that it should be, which is that, without people like him who are willing to force people like me to justify our position, it is not possible that this parliament can get things right. I agree with much of what he had to say—that an embryo must be treated with the same respect that a life is because that is what it becomes. He and I share similar cultural backgrounds and traditions in which we were brought up. Although I do not have a member of my family who went so far as to join the priesthood, we do our best under the circumstances.

I am going to vote in favour of this bill, the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. I appreciate what the Chief Opposition Whip has said and I agree with his concerns. But the reason I came down in favour of the bill is that, if there is meant to be one purpose of this parliament, in my view, it is to maximise the freedom of individuals wholly consistent with the freedom of others. There can be no greater freedom to grant to any particular person, family or community than the gift of life. At the moment, one in 200 Australians are predisposed to mitochondrial disease. It is an extraordinarily debilitating and awful disease. I cannot describe it because I fear I will become somewhat emotional. However, I have met children who are suffering from mitochondrial disease and their families. If it is possible for us to make sure that that suffering no longer needs to exist—this will not go towards a cure; it will go towards eliminating the possibility that a person will develop this disease—then I believe the parliament must take the step, with all due caution and all due consideration and with the possibility, if it does not work, of reversing course. If we are to fail, we should fail fast.

I think that this law, on its face, achieves what this parliament should do, which is to maximise the freedom of individuals wholly consistent with others. I do take some comfort in the knowledge that a law very similar to this has existed in the United Kingdom for about six years. The experience of that law in the United Kingdom has been a positive one. It has certainly been one that ethicists have observed and looked at very closely. To date, it has not resulted in the conflicts that many, including me, fear may result. But it has resulted in the fact that many people have been saved from the pain, misery and sheer awfulness of this disease. On that basis, I will add my voice in favour of the bill.

In summary, though, I would like to thank two people who I think have helped me understand the processes involved in the science of ensuring that we, as a parliament, can safely allow these donations to occur and also on top of that to ensure that there are many people who will benefit from it. They are Dr Doug Lingard and Professor Carolyn Sue, who have spent many hours educating me patiently but also informatively in what this bill will mean both scientifically and at a human level for so many ordinary Australians and their families. I thank the parliament for the time it has afforded me to make these comments.

Mike Freelander (Macarthur, Australian Labor Party) Share this | Link to this | Hansard source

I rise today to speak on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. At the outset, I would like to dedicate my speech to a little girl called Gabriella, who died, unfortunately, just before I entered parliament and who I cared for prior to her death. She died at age three from mitochondrial disease. It's hard for me to speak on this bill without getting emotional.

I acknowledge the views of my colleague the member for Fowler, who I deeply respect. He knows that. I disagree with him on this bill, but I acknowledge the thought that's gone into his speech and, indeed, the speeches of all the members who will speaking on this. I want to pay tribute to the minister for health; the shadow minister for health, Mark Butler; the previous shadow minister for health, Chris Bowen; and the member for Higgins, Katie Allen, who has worked with me to explain the basis of this bill.

Very quickly, mitochondria are the little organelles in every cell that produce energy. Every cell requires energy to survive. The energy is in the form of a chemical called adenosine triphosphate, or ATP, and the genetic defects that cause mitochondrial disorders involve ATP production. Without energy, cells die, and those that require the most energy are the ones that are most severely affected. That includes things like brain, muscle, liver et cetera. Mitochondria contain about 0.1 per cent of a cell's DNA, and we inherit our mitochondria from our mother, because the sperm have very few mitochondria. When they enter the maternal egg, the maternal mitochondria are the ones that we all inherit. Defects in the nuclear DNA can cause mitochondrial disorders, and defects in mitochondrial DNA can cause mitochondrial disorders. Mitochondrial mutations are present in about one in 200 people, and about one in 5,000 people will be born with mitochondrial disorders that cause severe illness. That means about 50 to 60 children every year in Australia.

This bill is a bill about hope. This gives people who have had a child with a mitochondrial disorder the chance of having a child with their own nuclear genetic make-up who will survive and be healthy. Mitochondrial disorders are horrific disorders to look after. There is no real treatment, and I've seen a number of kids with mitochondrial disorders not survive. Many of them have recurrent neurological problems, gradual deterioration in brain function, epilepsy and recurrent episodes of collapse, with severe metabolic acidosis. I've treated them for a number of years. Usually it becomes a problem of recurrent admissions to intensive care, with intractable seizures, gradual deterioration of brain function and death. I've seen parents have to bury their children, and that's a pretty horrible thing. To me, anything we can do to avoid this is really important.

Mitochondrial transfer, which this legislation before the House today allows, provides parents with hope. It enables parents to conceive children that they are biologically related to without the risk of passing on defective genes that would ultimately lead to a mitochondrial disorder in their child. It is cutting-edge technology—there's no question about that. But we know that it is the one thing we can offer to these families that may allow them to have a normal, healthy child. There may be other IVF techniques that can be used, but they do not produce a child that is genetically related to both mother and father.

We should never, I think, lose sight of the real human impact that these illnesses have on families and the message of hope that this will give them. It's a step towards ensuring that parents can raise children who have quality of life, a long life free of the burdens of mitochondrial disorders. That's what we're talking about. We cannot lose sight of the profound impact that mitochondrial transfer will have on a patient's quality of life and normal life expectancy.

Many types of mitochondrial disease, up until now, have been named after the clinicians who have first described them, mainly because there's no treatment. We are talking about disorders called Leigh syndrome, Leber hereditary optic neuropathy, and Kearns-Sayre syndrome. Other disorders are named by acronyms, such as MELAS or mitochondrial encephalomyopathy, lactic acidosis and stroke-like episodes; DAD or diabetes mellitus with deafness; or myoneurogenic neurogastrointestinal encephalopathy. They are all terrible disorders. There are many others. Symptoms can vary greatly, but many children have severe behaviour change initially; extreme lethargy; seizures; recurrent comas; ataxia, meaning a movement disorder; and visual disturbance. Some have severe vomiting; others have a failure to thrive. I have recently seen a child with severe failure to thrive who had mitochondrial disorder. Symptoms wax and wane, but the gradual trend is for deterioration. The clinical course is very distressing to all involved, including clinicians, parents, relatives and others. Apart from supportive care, there's very little that can be offered. But, because of advances in IVF and genetic therapies, techniques have been developed which may allow the affected family to have a healthy, unaffected child. There are two main methods of mitochondrial transfer. There is maternal spindle transfer, which involves adding a mother's nucleus to a donor mother's cell after its nucleus has been removed, prior to fertilisation. And there is pronuclear transfer, which occurs after a sperm enters the egg but before fertilisation is complete.

I have no hesitation in supporting the legislation before the House today, and I encourage everyone in parliament to support its passage. It gives hope to these families, and that's the one thing we can offer. Some of my colleagues have concerns based on their own ethical beliefs, but this legislation is above all about providing a choice to families, a choice to participate in a trial which could lead them to conceiving a healthy, happy child. Who are we to deny that choice?

As I have mentioned, I want to thank the minister for health. He's a decent man, and his passion for the patient experience is demonstrated through his resolve to bring forward Maeve's Law, which may not have been easy. I also want to acknowledge a number of parliamentarians, including the shadow minister for health, the previous shadow minister for health, and the member for Higgins. I'd also like to acknowledge the work conducted by the National Health and Medical Research Council, led by my friend John Rasko, and their review, which ultimately led to this legislation being drafted. It really is important, and they have done some very important bipartisan work. We wouldn't be at this point today, however, without the wonderful advocacy by the Mito Foundation, led by Sean Murray. Sean has been indefatigable in his approach to parliamentarians of all persuasions, and I thank Sean for his determination, his counsel and the efforts of his entire team at the Mito Foundation. I also had the privilege of hosting Oliver Hervir as an intern in my office in recent months, as part of the ANU parliamentary internship program. He's a very bright man with a very promising future. During his time in my parliamentary office, Oliver was tasked with producing a research paper for me on mitochondrial transfer as part of his university experience. I thank Oliver for his wonderful work. I have distributed his work to all my parliamentary friends and it's been extremely valuable in explaining the importance of mitochondrial transfer.

To me, this is very important work that we as a parliament can do. I recognise the importance of the conscience vote. I hope that this bill will be passed by this parliament because I think it's a very important first step for the families of the children I've cared for who've had mitochondrial disorders. I know that this first step will require the support of one or two organisations who will conduct this trial, but families do have a choice as to whether to join the trial. I think it's important to recognise that, no matter what we feel personally about the bill, this at least offers those families hope. I can remember the children with these very distressing disorders who I've looked after over a long period of time. Part of my role in this House is to bring forward these issues and to support these issues that would benefit my patients and my colleagues.

I think the House for the indulgence of listening to me about this. I do feel very strongly about it. I know there are many others who will talk on this bill who also have personal involvement. I thank them for their work and what they are doing to bring forward this bit of hope from our federal parliament about this very important issue. I thank the House. I commend this bill to the House. I strongly support it, and I thank everyone who has supported me throughout this journey of more than five years.

Dave Sharma (Wentworth, Liberal Party) Share this | Link to this | Hansard source

I rise to speak on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. We've received a good lesson in some of the medicine, science and ethics from the two previous speakers on the other side, and I commend their remarks. This is obviously a deeply personal issue for many people, and I respect that people will have differing views on this. From my own perspective, I look at this as someone who very much believes in the power of science to improve human lives. Our success as a species has relied upon harnessing science and knowledge, and all the traditions that come with them, to make our lives a little less nasty, a little less brutish and a little less short.

The subject we're discussing today, mitochondrial donation law reform, relates to mitochondria, the very small structures in our cells which generate the energy that powers every part of our body. They provide us with the energy our body needs to walk, to talk, to laugh, to hear, to digest food, to function and to breathe. They do this by generating adenosine triphosphate, which is used by the cells in which they sit as a source of chemical energy, and they generate this from glucose and oxygen.

All cells in the human body other than red blood cells have mitochondria, but what makes mitochondria somewhat unusual is that they have their own DNA, or deoxyribonucleic acid, which controls their function and, critically, also controls their energy production. Mitochondria, as previous speakers have said, are inherited exclusively from the mother, which means that mitochondrial DNA is passed on from the mother only. It's important to understand that this is quite separate from our nuclear DNA, which sits at the centre of us. Nuclear DNA comes from both our parents and informs who we are, our appearance, our personality and various other attributes.

Mitochondrial disease is a defect in these energy-generating structures within our cells. It's a debilitating disorder that robs the body's cells of energy, which usually causes multiple organ dysfunction failure and frequently death, because when mitochondria are faulty the body does not get the correct level of energy it needs to function. Depending on the person and the form of mitochondrial disease they have, they may suffer symptoms ranging from loss of motor control, strokes, seizures, visual or hearing problems, cardiac or liver disease, developmental delay or intellectual disability. The impact of such diseases, as you can imagine, can be devastating, and virtually all forms of mitochondrial disease have a significant impact on patients and those who care for them, including their parents. Babies and young children frequently die of Leigh disease, a form of mitochondrial disease.

Mitochondrial diseases can impact on sufferers in different ways. Many people with mitochondrial disease end up having repeated and prolonged visits to hospitals for treatment, which is invariably inadequate because it's not a disease that can be treated. They can present with things like temporary blindness or deafness, strokes, balance difficulties and digestive or eating difficulties, all of which require significant treatment and care. The fact that they will have repeated seizures or loss of motor control means that people of all ages suffering from this disease will usually not be able to work. They will often need full-time care. It will have a pretty broad impact on their family and social circles.

In some cases, mitochondrial disease is caused by genetic mutations in the nuclear DNA that we inherit from both our parents. Mitochondrial disease can also arise as a spontaneous genetic mistake at conception. But, in about half of all known cases, mitochondrial diseases are caused by mutations or defects in the separate mitochondrial DNA that we inherit solely from our mother. Around one in 200 people or around 120,000 Australians carry a mutation in their mitochondrial DNA that could potentially cause the disease. It is likely that defects in the mitochondrial DNA are much more common in the community than previously thought.

Around one in 5,000 Australian babies are born with a severely disabling form of mitochondrial disease that can cause death in infancy, childhood or adulthood, which is more than one every week. In Australia, there are about 56 children born each year with a very severe form of the disease, with the prognosis being that most of these children will die within their first five years.

Like many people here, I expect, I have members of my own electorate who have a story to tell. I had a couple, Vanessa and Tom Fennell, who sadly lost their 11-month-old daughter, Sibella, to mitochondrial disease in 2014. I met with Vanessa in July last year when she shared her tragic personal story and she told me about her view and her belief that legislative changes that would legalise mitochondrial donation would have a positive impact for parents like her.

It is possible to significantly reduce the risk of mitochondrial disease being passed on. That mitochondrial disease which is caused by defects in the nuclear genes can often be prevented through prenatal testing or an IVF based procedure called pre-implantation genetic diagnosis, but these approaches are generally not as reliable when the mutation is in mitochondrial DNA inherited from the mother. In this situation, mitochondrial donation is an alternative approach. Mitochondrial donation, the topic that we were discussing today, is an assisted reproductive technology that, when combined with invitro fertilisation, or IVF, has the potential to allow women whose mitochondria would otherwise predispose their potential children to mitochondrial disease have a biological child who will not inherit that predisposition. It does this by a complex process of creating an embryo which includes nuclear DNA from the two parents and mitochondrial DNA from a third party, a different woman as the mitochondrial donor.

Mitochondrial donation involves removing the nuclear DNA from the patient's egg containing faulty mitochondria and inserting it into a healthy donor egg which has had its nuclear DNA removed. This prevents mitochondrial DNA defects from being inherited by an otherwise genetically related offspring. It breaks the chain of transmission, if you like. So mitochondrial donation can minimise the risk of the transmission of a prospective mother's mitochondria and prevent future generations from inheriting these severe and debilitating diseases.

The purpose of this bill, the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021, is to amend existing Commonwealth legislation to allow such mitochondrial donation to be introduced into Australia for research and for human reproductive purposes. The key federal laws governing this area are the Prohibition of Human Cloning for Reproduction Act 2002 and the Research Involving Human Embryos Act 2002. These laws currently prohibit the implantation of a human embryo that contains more than two people's genetic material. This is regardless of whether that material is simply transferred, as it is in mitochondrial donation, or where genetic modification is proposed. Changing the law here, which is what this bill proposes to do, is critical to allowing affected individuals the opportunity to have genetically related children without the risk of them inheriting mitochondrial DNA defects which will drastically limit their lives.

In 2018, the Senate Community Affairs References Committee undertook an inquiry into mitochondrial disease and related matters. Reporting in June of that year, they made a series of recommendations, including that public consultation be undertaken about the introduction of mitochondrial donation reforms. Over 2019 and 2020 the NHMRC, the National Health Medical Research Council, undertook a series of consultation activities. These were informed by experience in the United Kingdom, where mitochondrial donation has been lawful since 2015. The outcome of these inquiries and the overseas experience have shaped this bill, which outlines, in my view, a carefully staged pathway towards the legalisation of mitochondrial donation in clinical practice.

A two-stage implementation process is proposed in this bill, with mitochondrial donation initially being legalised for certain research and training purposes and to support selection and licensing of a pilot program to deliver mitochondrial donation to impacted families. Stage 2 would then allow or permit mitochondrial donation in clinical practice more broadly, depending upon the outcomes and an evaluation of the initial pilot program.

Mitochondrial donation cannot be used to cure people with existing mitochondrial disease, nor can it prevent mitochondrial disease caused by changes occurring in an individual's nuclear DNA. Mitochondrial donation can, however, minimise the risk of transmission of the prospective mother's mitochondria and, in doing so, prevent future generations from inheriting these severe and debilitating diseases. What this means in practice is that other children and parents like Sibella and her parents, Vanessa and Tom, will not have to suffer the devastating consequences of mitochondrial disease.

There are some who have ethical concerns with this legislation. We've heard from some tonight already, and I expect we will hear from more. I respect that, but I also believe that all of the advances we have had as a species, as humanity, have relied upon the embrace of science and technology to protect people from disease and to prolong human life. It's the harnessing of science, medicine and modern empiricism that has led to the doubling of our life expectancy in the last 100 years alone. All of us here are beneficiaries of modern medicine and modern science, and I do not believe that we can stand in the way or deny this to others. That's why I support this legislation, and I commend it to the House.

Rebekha Sharkie (Mayo, Centre Alliance) Share this | Link to this | Hansard source

The passage of this bill, the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021, will determine whether Australian parents impacted by mitochondrial disease will have the ability to minimise the risk of their children inheriting this devastating and life-threatening disease. Firstly, I'd like to give a shout-out to all the volunteers involved in yesterday's mitochondrial disease fundraiser, the Bloody Long Walk. Over a thousand people participated in the 35-kilometre walk around Canberra yesterday, and I was pleased to join for the last leg and raise some funds for much-needed research and awareness. In total, the group raised $175,000, a huge achievement for one day.

What is mitochondrial disease? It refers to a group of disorders that sit in the metabolic diseases category. They are a group of X chromosome linked genetic conditions that affect the mitochondria, the powerhouses that are found in every one of our cells. The mitochondria's main function is to produce energy, which is greatly needed in high-energy-demand organs such as the heart, muscles, brain, liver and kidneys. In layman's terms, when your mitochondria doesn't work you cannot produce energy and you suffer organ dysfunction as a result. This can mean loss of eyesight, brain dysfunction, strokes, epilepsy, organ failure and developmental delays. One in 200 carries the mitochondrial disease gene. There are approximately 350 variants of mitochondrial disease, and more variants continue to be found. Symptoms can present at any age, from infancy until late adulthood. It is a ticking time bomb for those who carry the gene. Often, the younger the onset the more pronounced the disease. Currently, there is no highly effective treatment or cure. There is an Australian born every week who will develop severe mitochondrial disease.

This bill is an important step forward for families affected by mitochondrial disease and will reduce the burden of disease for future generations. The bill has had extensive consultation, including in the Senate Community Affairs Legislation Committee's inquiry into the Mitochondrial Donation Law Reform (Maeve's Law) Bill; the committee's 2018 inquiry into the science of mitochondrial donation and other matters; subsequent consultation and work led by the National Health and Medical Research Council; and Department of Health consultation on the bill earlier this year.

Mitochondrial donation is an IVF based technique with the potential to prevent mitochondrial disease in the next generation of Australian children. Mitochondrial disease is carried on the maternal line, and mitochondrial donation involves replacing the faulty mitochondria with healthy mitochondria within an egg. A fertilised egg is then transferred to the mother, as per current IVF practices. Mitochondrial donation law has been active in the United Kingdom since 2015. Unfortunately, there's been much spreading of disinformation and fearmongering about this bill. This is not about genetically engineering a child to have blue eyes or blond hair or brown eyes, and it's not playing God. This bill is simply about allowing medical technology trials to give hope to families that they can have children free of mitochondrial disease. Similar fearmongering happened decades ago when IVF technology was considered. Now IVF is commonplace and has given thousands of childless couples the ability to become families.

This bill is named after a little girl called Maeve who lives with mito. I would like to thank all of the families who have openly shared their personal stories to build awareness and support. Last week I spoke to Suzie from Lobethal in my electorate. Suzie and her husband lost their beautiful little baby girl, Dot, to mitochondrial disease in December 2019. At the time the Georgiou family lost their little girl, the Lobethal community, where they lived, were suffering terribly with the Black Summer bushfires. Suzie said she remembered praying at the time, saying to the universe, 'Take my home, but spare me my child.' But this didn't happen. This bill cannot change the diagnosis for those born, but it will give hope to families who currently have none.

I barely talk about my family in this place. I know some members do, and I respect that. Many of the cards and newsletters that are on our tables have lovely families in them, but I've always kept my family life quite private. However, for this important legislation, I will make an exception, and I've sought permission from my son and my grandson's mum to share our family story. Little Liam, my grandson, was born in February 2020 after a healthy full-term pregnancy. Liam was delivered by emergency C-section, not breathing. He was resuscitated and emergency transferred to the Women's and Children's Hospital. It was a traumatic birth for Liam, who then spent a long time in the neonatal ICU and then the special care unit. Most babies in the neonatal ICU are premature, some as big as your hand. Liam was eight pounds, yet the nursing director said to me, 'He's the sickest baby on the ward.' Hooked up to IV lines in every limb to stop him going into cardiac arrest, he was intubated and heavily sedated. We were told he was on a knife edge and things could go either way.

Life for Liam has been, from that day, a very difficult journey but one that has been filled with love. On oxygen day and night for more than a year after his birth, it was a big step forward when Liam was able to not have oxygen in the daytime but only at night. Liam, in his short little life, has had countless hospital admissions, operations and procedures. We knew something was wrong. His little veins are so compromised that getting a blood sample or tapping a vein to conduct an MRI is an ordeal. I would like to thank the numerous teams at the South Australian Women's and Children's Hospital that have helped keep my grandson alive. The feeding team, the neurological team, the renal team, the metabolic team—the list goes on. His file, when I last glanced at it, is about 15 centimetres thick. They do extraordinary work at the hospital.

Liam hasn't been able to reach the usual baby milestones—to roll, to roll over, to sit, to crawl, to talk, to walk—and this makes him so frustrated. He loves to play peekaboo and uses all his energy to slowly raise a hand over his eyes. Eating can be difficult. Every single action that your body makes uses a muscle, so every movement and function is a challenge. In the end, genetic testing revealed a diagnosis of phosphoglycerate kinase deficiency, or PKD. It's incredibly rare, and it sits within the mitochondrial disease area. My grandson's muscles are wasting away. His organs are compromised. A tummy bug will send him to hospital for a week, suffering renal failure. His CK levels reach 150,000 units per litre. A healthy adult has a CK range of between 26 and 200 units per litre. When this happens to Liam he experiences severe muscle damage and the damage to organs is immense. MRIs now show a thickening of the skull, and his brain has signs of white matter next to grey matter. That is brain atrophy. It's a bit like dementia for babies.

Because of this genetic condition, Liam's mum has been told she should not have any more children. How do you say that to a young woman? This means Liam will never know the joy of having a little brother or sister. My heart hurts for Maeve and for Liam and for all the other children suffering. And my heart hurts for their parents. As a grandma, I feel like my pain's doubled: the pain I carry for Liam, the pain I carry for his mum and dad and the pain I carry for my other children who dearly love their nephew. I feel such pain for Dot's family and all the families who have lost their child. No parent should have to bury a child.

As a grandparent, I just want hope; I want hope for all families who carry these genetic diseases. These are metabolic diseases that we can easily identify now with modern technology sitting on specific X chromosomes, and we have the medical technology to intervene to stop the suffering. I share with you my personal story in the hope that members in this place who are undecided on how to vote will vote for this bill, and I hope that I have given them a little more insight to the pain it causes and hope that, one day, this will not occur. We need your courage as members in this place to make that hope a reality. Thank you.

Matt Thistlethwaite (Kingsford Smith, Australian Labor Party, Shadow Assistant Minister for the Republic) Share this | Link to this | Hansard source

I support the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021, and I congratulate the health minister, the shadow health minister and other members who have spoken in this debate for the bipartisanship and the approach that the House has had to this important legal reform. I support this bill for three reasons: firstly, legalising this technology has the potential to help parents—namely, women—afflicted with hereditary mitochondrial disease to have healthy children; secondly, the introduction of mitochondrial reproductive technology is consistent with Australia's medical and ethical practices, such as organ transplantation and IVF; and thirdly, the introduction of this procedure will be properly regulated by the Embryo Research Licensing Committee to ensure the proper licensing of clinical trials, consultation and evaluation.

Mitochondrial disease arises from certain mutations in DNA encompassing several disorders. It's passed on by the mother and results in many disorders, including muscle weakness, impaired vision or hearing, development delays, heart defects, diabetes and seizures. The member for Mayo has recently outlined the effects on her grandson. It usually affects the brain, eyes and heart and can be difficult to diagnose. It almost always results in a painful death of the child at a very early age, and, unfortunately, there is no cure.

However, new scientific breakthroughs are giving hope. Mitochondrial donation is an emerging assisted reproductive technology allowing the DNA of parents to be combined with a female donor's healthy mitochondria. It allows parents to have children that are 99.9 per cent genetically linked to them and ensure that those children are free of the mutant DNA. In recent years, I've had the pleasure of starting the Bloody Long Walk. This event is close to a 40-kilometre walk that is organised by the Mito Foundation to raise funds for medical research into mitochondrial disease, and it starts in Malabar, in Sydney, in my electorate.

I've met with many parents and relatives who have lost children to mitochondrial disease. One of those families that really touched me is the Tierney family. Elizabeth and Robert Tierney from Botany told me of the story of their brave son, Cooper William Timbery Tierney. Cooper was born on Christmas Eve—the perfect Christmas present for their family. Initially, Cooper was putting on weight and feeding well. But, at three weeks old, Cooper was sadly diagnosed with a mitochondrial complex I deficiency, known as Leigh syndrome. Liz says mitochondrial disease is explained by the doctors as 'any symptom, any organ, at any age'. Sadly, there's no cure, and the best case was to treat the symptoms.

Liz and Robert told me that, despite his obstacles, Cooper was an amazing son. He had an infectious smile, a cheeky spirit and a strong will. But over time he began to deteriorate. That included seizures that stopped his breathing. There was also hypertrophic cardiomyopathy, lactic acidosis, swallowing incoordination, hypospadias, hearing impairment and cardiorespiratory failure. Cooper died peacefully in his mum's arms at the age of six months and one day. Liz and Robert said Cooper's strength, courage and resilience made each day with him brighter and full of hope. They were incredibly proud of their warrior son.

The reform that we debate here today is about giving parents in the future and their children a chance to not suffer the crippling complications that brave Cooper and other children whose lives have been taken by mitochondrial disease suffered. I've asked Liz for her views about this bill, and she said, 'Every parent should have access to the tools needed to provide their children with the best start in life, just as every child should have the opportunity at a healthy life.' It's because of people like Liz, Robert and Cooper that I support this reform to give parents and their children access to the opportunity of a healthy life.

This bill is being debated and voted on by both parties as an issue of conscience, and I recognise and respect the ethical concerns some have regarding the use of such medical technology. I've weighed those ethical concerns and considerations with my Catholic faith, and I've decided, on balance, that the benefits of this reform, particularly for the health of children in the future, far outweigh the risks.

The objection some have to assisted reproductive technologies is that it involves the unnatural creation and destruction of embryos. With respect to those that hold this view, I believe that the issue of the benefit versus the cost of this technology has been settled in Australia in favour of the safe use of this technology. Assisted reproductive technology such as IVF has been accepted and used safely in Australia since the 1980s. The technology has given millions of Australians the joy of having children who might otherwise not have had that opportunity. And the Senate inquiry that looked at ethical and medical issues of mitochondrial reproductive technology concluded that MRT is indistinguishable from ARTs, assisted reproductive technologies, as it does not result in the greater destruction of embryos. Quite simply, if we have IVF, then we can also have mitochondrial donation.

Some have claimed that mitochondrial donation equates to germline genetic modification or gene editing. This is incorrect and misleading. Mitochondrial donation is distinctly different from gene editing, since it does not cut or modify DNA but replaces the entire mitochondria without altering the mitochondrial DNA they contain. This issue was looked at by the United Kingdom parliament in an inquiry that was conducted over there. They determined that mitochondrial donation is not germline genetic modification, and, in 2015, the UK parliament changed its legislation to allow for mitochondrial donation.

This legal reform will be accompanied by appropriate safeguards to ensure the highest ethical and safety standards for the use of the technology. The introduction of mitochondrial donation in Australia will be regulated by the Embryo Research Licensing Committee, the ERLC, a subcommittee of the National Health and Medical Research Council. It will undergo a thorough stage 1 trial. Stage 1 is estimated to be a 10-year clinical trial, and the ERLC will oversee the regulations of clinics, technologies and eligible patients who take part in that trial.

Donation will be anonymous, allowing donor conceived children to identify donors, but donors will not have access to information regarding donor conceived children. Mitochondrial egg donors would not be considered legal parents of the children. There will also be mandatory reporting of adverse events.

In conclusion, I want to thank the Mito Foundation for their advocacy and their support of families dealing with mitochondrial disease and their campaign to have this issue brought to the parliament. I have found the briefings that I've had with the Mito Foundation very informative and rewarding. I congratulate them for their work and for their work with families in highlighting this issue for the parliament. I especially want to thank Elizabeth and Robert Tierney and their brave son Cooper for allowing me to speak about Cooper's disease and unfortunate passing to highlight this issue here in the parliament. They are wonderful family who live in my community and have shown great bravery and great advocacy for others.

I support this bill because it will greatly improve the lives of children and their parents. These are children who would otherwise suffer a horrific and premature death. It gives those families hope that their children will lead a normal, long life whilst appropriately balancing the ethical use of scientific practice to achieve good. On that basis, I will be supporting this bill.

Andrew Laming (Bowman, Liberal Party) Share this | Link to this | Hansard source

[by video link] Thank you, Deputy Speaker Goodenough, for the second opportunity. I too strongly support the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. Mitochondrial disease is a group of inherited conditions that can significantly reduce an individual's life expectancy. Maeve's law, as it has been colloquially named, is the proposition that we can allow the staged introduction of mitochondrial DNA donation techniques into Australia.

This story goes back many years. I was a medical and public health adviser under the Howard government with then minister Kay Patterson. At the time, the assisted reproduction debate around embryonic stem cell research came to the fore. This was a highly complicated piece of legislation. It's interesting that today is one of those few moments where that legislation is further amended. Of course, it's very hard to see where this kind of legislation will lead. I'm extremely proud of the work that I know that any government at that time would have done to ensure that embryonic stem cell research were possible. It's also a credit to how far society has moved and that, if science has the ability and the overwhelming benefit is clear—not just a net benefit but overwhelmingly so—the community is willing to countenance what, a generation ago, we couldn't have conceived. That is what this debate is all about. I commend the courage of other members contributing tonight.

This bill is amending existing legislation. There has effectively been a prohibition on mitochondrial donation here in Australia, but my training as a GP obstetrician gynaecologist back in the UK introduced me to early work in this space and another controversial area of legislation that Australia addressed back in 2006: the controversial use of RU486. The irony, of course, is that abortifacients and technology like this find themselves under the general purview of obstetrics and gynaecology as far as specialist medical training goes. I pointed out back in 2006 the irony of working back in 1991 and 1982 in the UK for the first time in obstetrics and gynaecology: that one would work all morning counselling infertile parents only to then be performing terminations of pregnancy in the afternoon. It's incredibly morally stressful.

To hear the stories that have been recounted by colleagues tonight in the chamber and early parts of the debate, we know just how much this means to you. The fact that this may be a disease that, in its severest form, may affect one in 50,000 Australians or one in 10,000 is no reason to say, 'I'm happy to roll the dice and, if I'm lucky, not worry about those who have to live with mitochondrial disease.' If it is within our powers then we should address it. I want to recognise Catherine McMahon, an absolutely committed and steadfast former policy adviser who has taken up the reins to see this legislation passed. Thank you, Catherine, for your great work. Over the last few years this has been a very, very committed campaign. I congratulate everyone involved for getting to your federal MPs and, hopefully, making this path as smooth as possible.

This two-stage approach is really important, having research and training as well as further evidence being collected over time. It also allows the community to become more comfortable with these decisions. As I pointed out back in the RU486 debate, it's not just about safety and efficacy. It's not just about the TGA saying that a process has been assessed and therefore it's stamped and can happen. We need to take the community with us. It was for those reasons during the RU486 debate that I felt the community needed more say. I felt that, if there were something that completely changed the landscape, as an abortifacient would, that should be a decision that came to the parliament and to the people and not just a decision of the health minister.

I actually moved an amendment that, while not successful, pointed out just how important changes like this are and that they need to come before the parliament. There were throwaway lines I recall from the Australian Greens at the time: 'Do we have this debate every time there's a new abortifacient introduced?

Are we going to have a debate like this every time a new mitochondrial technique is introduced?' Hopefully, no, but for moments like today it's very important that these issues are being brought to the chamber, brought to the parliament and transmitted nationwide. It's very important to make sure that everyone realises that there has been a thorough consultation phase and process, which I'll talk about in a moment.

I want to clarify a few things because many people have characterised these changes as more significant than they really are. This is ultimately about looking after people who are likely to have children who wouldn't have normally functioning mitochondrial DNA, which impacts the function of mitochondria. This only assists those who have an mRNA deficiency or defect, so it's about half of all cases, but it can have catastrophic effects in those that are affected. The symptoms can be seizures, muscle pain, fatigue, vision loss—very close to my heart—hearing loss and heart problems. I've talked about the odds of it appearing: about 60 children each year are affected by the severe form. There are 60 very good reasons to follow the UK's lead because they've always been very forward-leaning in this space. There are 60 very good reasons to acknowledge that there is no cure and that, if there is a scientific solution and a medical treatment, every Australian deserves the right to make their own decision about whether they should have access to it, if it has been established as being safe and effective and consulted on with the community. Obviously, I recommend that we watch the UK very closely.

The legislation being considered tonight is very similar to what's been done in the UK. I remember the HFEA conducting their public consultations in the UK. That was a very important process and one that we've followed here. We had the Senate inquiry three years ago. The Senate community affairs references committee carried out the inquiry. I remember the findings being that there was a need for more consultation and more scientific review. But remember that time is ticking and, every time we delay these matters by a year, Australians are affected and living with the impacts of mitochondrial disease for life.

Two years ago the NHMRC conducted a series of community consultations exploring moral issues around changing these rules and how the community felt about them. I think that was very important. It noted these issues associated with mitochondrial donation, including the creation and destruction of embryos, and the beliefs that it could potentially create children with more than two parents or that it's a form of genetic modification. I think those questions have been fairly answered and, on balance, adequately answered.

Many supported the introduction of this two-stage regulatory approach. It's a lovely model going forward, should further changes ever happen to this legislation. The first stage is that mitochondrial donation itself would be legalised for particular research and training purposes and would support the selection and licensing of clinical trials where you could look more closely at the impact and success of mitochondrial donation and how it affects impacted families. Then a second clinical trial, a single one, should be allowed to run for a number of years. The Commonwealth Department of Health should potentially run a competitive grant process to identify who would run that. The licensing committee, the ERLC, should then have an expanded licence and regulatory role to oversee the mitochondrial donation process and its licensing, ensure that those that carry it out are adequately trained, administer applications and monitor compliance with these new laws.

I commend every member who has gotten to know families who are living with mitochondrial disease, and I commend those families for getting out to see their MPs and getting this parliament to a position where it certainly wouldn't have been 10 or 15 years ago when embryonic stem cell research was first considered. This is not the leap that that was, but this is a very important tinkering—a recognition that mitochondrial DNA is completely different from nuclear DNA and that it offers incredible hope for a small number of families. It's a transformational piece of science that can give life, health and longevity to those who would otherwise be affected by this terrible disease. This bill has my full support.

Peta Murphy (Dunkley, Australian Labor Party) Share this | Link to this | Hansard source

This speech is dedicated to Ruby from Frankston, her mother, Janine, her sister, Isabel, and her brother, Trent. This is Ruby's story in the words of her mother Janine:

Ruby was welcomed into the world on 31 July 2007. She seemed perfectly healthy, was settled and feeding well. On the last night of our hospital stay, I had dozed off and woke suddenly; I looked down, Ruby had gone limp in my arms and her skin had turned a grey yellow colour. Immediately I knew something was wrong. I rushed her to special care – she had stopped breathing and the nightmare had begun. I was interviewed by the medical staff as to what had happened. I felt like a criminal. It was awful and I felt sick in the stomach.

A few days followed, and my husband and I were approached by a doctor who specialised in mitochondrial diseases. He started talking to us about the possibility of Ruby having one. It was overwhelming as we knew nothing about them.

The doctors decided to operate on Ruby to take samples of her liver for testing. At first I didn't want them to put her through any more pain but I realised that she would have to go through it as we needed an answer.

She made it through the operation but it was so bittersweet. We had just been informed that it was inevitable she was going to die as she was not thriving or getting any better.

We prepared for her death. It was surreal – like getting your beautiful child ready for a party – dressing her in a nice outfit and brushing her hair but in this case we were taking her foot and handprints and a lock of hair.

We were given a pram so we could take her outside. It was winter but the sun had come out, and she opened her eyes and once again seemed like a healthy baby just for a moment. I wanted to take her and run away with her right there and then to escape her impending death. She died an hour later in my arms.

A few months later my husband and I were called back to the hospital and were told that Ruby had died from the mitochondrial disease, Complex IV.

I have two other children. They are only young, but when they become adults, they will need to be tested.

Janine told me that it is so important that this legislation goes through. It will always be in the back of her mind—and Isabel's and Trent's minds—as to whether her other children also have mitochondrial disease, and they will have to be tested before they have kids. Isabel and Trent know about their sister Ruby, they know about their mother now being a big supporter and working with the Mito Foundation, and they know about this legislation. Janine said to me that what she went through with Ruby, and what she has to face for the future of her other two children, is something that she doesn't want any other parent to have to go through. She said it was heart-wrenching and their whole lives were changed. It was scary that Janine didn't know that she had mitochondrial disease that she could pass on in her genes.

Janine told me that, if this legislation had been in place and she had known what she knows now, she would have had the donation and that she will do anything to help the Mito Foundation, which didn't exist when Ruby was born. She told me, when I spoke to her a few months ago, when we saw that this legislation was listed, that she was crossing her fingers on this one. I have no doubt that, knowing this legislation was coming up for debate today, Janine is crossing her fingers today and will be tomorrow when we vote.

There are other families in my electorate whose babies have died and whose adult daughters have died. I know of an amazing young woman who has mitochondrial disease and is doing all she can to lead a life of joy and fulfilment and service.

It's for Ruby and her family and for everyone else who has a story like Ruby's and Janine's that I am supporting this legislation. I'm also supporting it because it is good science and it's science that will give people the opportunity for a longer, healthier and happier life. In the end, that's what we all want. If this science, this technology, can give that to people who otherwise might not have children, if it can give that to people who might otherwise have been born with mitochondrial disease and had a short and difficult life, then I believe it is my ethical and moral duty to support this legislation, and I'm doing just that. I respect people who have faith that means they have difficulties with this legislation; that's their right and their position. But I urge all my colleagues to do as others have done—to engage with the legislation, to engage with the Mito Foundation and to see if you can get to the position of also supporting it.

I want to thank the Mito Foundation for all the work they've done—their briefings on this legislation, their advocacy and their support for people like Janine from my electorate. I want to add my congratulations to the congratulations that others in this chamber have given to the Minister for Health for bringing this legislation forward and stewarding it through. I congratulate the shadow minister for health on the way in which he has conducted himself, and the previous shadow minister for health, with this legislation through our caucus.

Janine, I hope your fingers are crossed, and I hope you, Isabel and Trent get to see this speech and know that you have done what you can to help others not to have to go through what you went through.

Katie Allen (Higgins, Liberal Party) Share this | Link to this | Hansard source

We've heard many incredibly moving speeches this evening. I would like to thank the speakers before me for the contributions they have made, including the member for Dunkley for her contribution, and to add my voice to supporting this bill, the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. As we've heard, each week in Australia one baby is born with a severe genetic disorder called mitochondrial disease. It's a largely inherited genetic disease. The prognosis for these children, the ones with severe mitochondrial disease, is that most of them will die within their first five years of life—in fact, most in their first year or two.

I remember learning about this condition in a textbook as a young medical student. It sounded horrible:

Leigh syndrome is a severe neurological disorder that usually becomes apparent in the first year of life. This condition is characterized by progressive loss of mental and movement abilities (psychomotor regression) and typically results in death within two to three years, usually due to respiratory failure.

That is very clinical, very cold and very factual. But as a young paediatrician I saw that the reality is not just horrible; it is devastating. It's a devastating condition. It is devastating for the infant; it's a horrible way to die. It is devastating for the parents as they struggle with diagnosing a puzzling set of symptoms.

Imagine picking up a child that, over days, weeks and months, becomes progressively floppy. A baby that might once have rolled stops doing it. First the parents are a little worried. They go and see a doctor. They become increasingly worried. Strange things are happening. They're confused. They seek help from different specialists. It's not a particularly common set of symptoms and conditions. They can see many doctors before it is finally diagnosed. And the diagnosis itself is completely devastating, not just for the family but also for the friends around that family and for the community.

I can tell you that the conversation you have as a paediatrician is the hardest conversation you can have. It's a conversation that you know will profoundly change the lives of these people sitting in your room. You know it's going to change not just the life of that child but the lives of their siblings, parents, grandparents, aunties, uncles, cousins—everybody. We are trained as doctors to be caring and supportive and to break news gently. But you know, as that doctor, that the minute you say what is essentially a death sentence they can't hear anything else. It's like a white wall comes down; they're not going to hear anything, so there's not much you can do to make the conversation easier. You do all you can to try and make it as gentle as possible, but it is an awful thing to have to deliver to a family.

Many of us probably know someone who has lost a child. It is indeed a parent's greatest fear. In fact, I said in my first speech that there are words, like 'widow' and 'orphan', that articulate and describe our loss. But there is no word in the English language for the loss of a child. In fact, I've yet to find a language anywhere in the world that in fact describes that, because it is almost unimaginable. It is not something we want to be able to describe. It's a devastating loss.

So you can imagine how much devastation families experience and how there are so many wonderful people who have taken this grief and converted it into a drive to provide hope for others. They have taken a loss, a pain that will never go away, that will never really dull, and they have used that for the betterment of others, to try to provide hope to those who have had to deal with pain, this loss, this suffering and this grief. We heard earlier this evening the deeply moving speech by the member for Mayo, whose family has been affected by this condition and its devastating outcome. Then there are also people like Maeve, for whom this bill is named, and her family. That's essentially why we are all here today.

I would like to thank the Minister for Health and Aged Care, the Hon. Greg Hunt, for chaperoning this bill through careful processes that engaged parliamentarians throughout the chamber and across the divide in a careful, supportive way that allowed people to come on the journey of discussing what is an incredibly profound decision that this parliament will be making. I think it is wonderful that we are to be given a conscience vote. I know there are many people who have struggled with making decisions around what is an incredibly important form of legislation.

The purpose of the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 is to amend existing legislation to allow for mitochondrial donation to be introduced into Australia for research and human reproductive purposes. This bill will allow women whose children would otherwise be predisposed to severe and life-threatening mitochondrial disease to have a biological child who will not inherit that predisposition. For those predisposed to this genetic disease and who carry this genetic disorder, if the bill passes, they will now have the hope that they can process a mitochondrial donation to limit some of the risks of having a child, or having another child, with mitochondrial disease.

Mitochondrial donation is in effect an assisted reproductive technology that, when combined with invitro fertilisation—and I make note of the fact that Australia has been incredibly world-leading in the area of invitro fertilisation, commonly known as IVF—will provide the potential to allow women whose mitochondria would predispose their potential children to mitochondrial disease to have a biological child who does not inherit that predisposition. The technique is a complex process to create an embryo which includes nuclear DNA from the man and the woman seeking to have a child and mitochondrial DNA from a different woman, the mitochondrial donor. Mitochondrial donation can therefore minimise the risk of transmission of the prospective mother's mitochondria and, in doing so, aims to prevent future generations from inheriting these severe and debilitating diseases.

To explain this more simply, we all have mitochondria in our cells. They are essentially the batteries of the cell. They are the energy stores of the cell. Those suffering from mitochondrial disease have faulty batteries. It is a bit like this: if you think about a chicken's egg, there is the yolk in the middle, which is the nucleus, and then there is the white part, which is the cytoplasm. In that, there are little batteries that are the mitochondria. Mitochondrial donation, however, cannot be used to cure people with existing mitochondrial disease, nor can it prevent mitochondrial disease caused by changes occurring in an individual's nuclear DNA. So this is specifically to do with mitochondrial DNA.

I'd like to address the report that sometimes raises its head in the media that mitochondrial donation is 'three-parent IVF'. This is not an accurate description of mitochondrial DNA. In fact, it's unfair. Children born using this technology still have only two biological parents: a mother and a father. That is because these children will inherit their characteristics and personality traits from their biological parents through their nuclear DNA—the egg yolk of the fertilised egg. A female donor involved in the mitochondrial donation process only provides healthy mitochondria—only the batteries of the cell. While mitochondrial donation techniques result in change to the genome, they do not involve gene editing of either the nuclear DNA or mitochondrial DNA, which has been expressly prohibited by this bill. To put it simply, the donor does not affect the colour of a child's eyes, hair or the like. It's only the parents who will provide those heritable traits to the offspring.

A two-stage implementation approach is proposed to introduce mitochondrial donation in Australia. Stage 1 will see mitochondrial donation initially legalised for certain research and training purposes and to support selection and licensing of pilot programs to deliver the mitochondrial donation for impacted families. Under stage 2, mitochondrial donation would be permitted in clinical practice more broadly, after results of the pilot program. This provides that the necessary checks and balances are in place. Under both stages of the program implementation, the use of specified mitochondrial donation techniques would be subject to strict licensing and regulatory conditions, which would be overseen by the Embryo Research Licensing Committee of the National Health and Medical Research Council, which is a very esteemed body, extremely careful and diligent in the processes that it undertakes, and has its own very careful framework in which to assess these things. This will mean that the Embryo Research Licensing Committee of the NHMRC will be expanded under the bill to include licensing and oversight of research and training licences, a clinical licence for the initial pilot site, and future clinical practice licences using mitochondrial donation techniques. Approval of individuals seeking access to the treatment will also be required and will be based on clinical recommendations. That means doctors will need to assess whether the patient and family are in need of this technique.

The bill also aligns to other Australian laws preventing exploitation and incentivisation for donors. I repeat: this is a very important law within Australia because in other countries there is permission for certain sorts of incentivisation, which can lead to exploitation of donors for donor organs and suchlike. But in Australia we operate under a very important ethical framework, and it's very important to make sure that there's a separation of these sorts of procedures from any form of recipient of funding or financing.

Donor rights and responsibilities for Australian mitochondrial donation egg donors would be largely aligned to current artificial reproductive technology regulations. This would include that mitochondrial donation egg donors would not be considered legal parents, in line with current ART—or artificial reproductive technology—sperm and egg donors, under the Family Law Act 1975. This is very important. Children conceived with mitochondrial donation would have the right to apply for identifying information about their donor only when they turn 18 years of age, as is the case for other sperm and egg donation. Donor eggs may be provided voluntarily from family members, from friends or from individuals who agree to donate eggs or have eggs that are excess to their own needs in IVF clinics.

Not only as a member of parliament or as a paediatrician but as a parent—having four beautiful, healthy children—I ask that all members take a moment before voting on this bill. Put yourself in the shoes of a parent who carries these genes, or a parent who has a child who suffers from mitochondrial disease, or even a parent who's tragically lost a child prematurely to this disease. Often we find, as doctors, that people have one view until it happens to them or their family members. It's very powerful to understand living in someone else's shoes. So I ask members opposite who may be unsure about this: put yourself in the shoes of others, speak to the experts and make sure your questions are addressed before you make this conscience vote. We all have the power to unite on this and deliver hope for a future without this cruel disease. I commend the bill to the House.

Zali Steggall (Warringah, Independent) Share this | Link to this | Hansard source

I rise to speak on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. The bill amends existing legislation to allow mitochondrial donation techniques to be used for research, training and human reproductive purposes. The overall aim is for women at risk of passing on a mitochondrial disease to have reproductive options for biological children without the increased risk of their child having mitochondrial disease.

It's really important for people, before judging, to understand just what having a child with mitochondrial disease means. Mitochondrial disease is a group of inherited conditions that can cause serious health issues and, in severe cases, death in childhood. Disease is caused by mutations that impact the function of the mitochondria, meaning it reduces their ability to produce energy. To give you perspective: in Australia about one in 200 babies are born with some level of mutation that could lead to mitochondrial disease in their lifetime, and about one in 5,000—so some 10,000 Australians—develop severe or life-threatening mitochondrial disease in their lifetime.

This is very important to Warringah. The bill is named after Maeve, a little girl who, at the time of drafting, lived in the minister for health's electorate. I commend the minister for health for his compassion in bringing this bill forward. He's working with the family and ensuring that a conscience vote is available to the members in this place on this legislation. I wish there were more such votes on so many issues in this place. Maeve's grandfather now lives in Warringah, and I spoke with him recently about the bill. He was worried that this bill wasn't going to come on before the end of this term, and he was fretting that, if there were any further delay in voting on this legislation, more families and more children would be impacted. It is vitally important that we debate and consider this bill as soon as possible because, as he explained to me, while the bill won't help Maeve, it will be vitally important for many future children and families. He would like the House to know that Maeve is a wonderful, happy child. She has already far exceeded her life expectancy: she is eight years old. Greg implored me to vote in support of this bill, and I will be doing that.

The Mito Foundation have a strong presence in Warringah. They do fantastic work to support people affected by mitochondrial disease, and they're raising funds for essential research into the prevention, diagnosis, treatment and cures of mitochondrial disorders and increasing awareness about the disease. Very recently there was the Bloody Long Walk, which traverses four of the beautiful beaches of my electorate. Excuse me; obviously, the title of the walk is because of the length of the walk. It traverses Dee Why, Curl Curl, Freshwater and Manly. It is one of the fundraisers for the Mito Foundation. I have been a proud participant in the Bloody Long Walk numerous times. Excuse me; I really shouldn't repeat the name. It's probably an unparliamentary term, but it is the name of the walk. It is some 35 kilometres long. It was held once again the weekend before last, in horrendous weather. The coastline of the Northern Beaches was full of drama, under dark storm clouds, but so many participated because they know this is such an important cause.

A mitochondrial donation is an assisted reproductive technology that can assist women to avoid passing mitochondrial disease to their children. It works by creating an embryo, by using the nDNA from the perspective mother and father and healthy mtDNA from a donor. In the UK, legislation was introduced to permit mitochondrial donation in 2015, and the UK remains the only country that has done so. Our current legislation prohibits mito donation under the Prohibition of Human Cloning for Reproduction Act 2002 and the Research Involving Human Embryos Act 2002. It's time for that to be amended and to bring the law forward to these developments.

The bill amend these acts to make donation legal for research and human reproductive purposes. The bill creates a two-stage implementation approach. It has been thorough, to ensure that there are no abuses and that this is done to the highest standards. In the first instance, there will be limits on the number and type of licences to practise the procedure, in preclinical and clinical trials only. And then, once clinical trials have been shown to be successful and the findings of stage 1 reviewed and accepted as safe and effective, stage 2 will permit mitochondrial donation in clinical practice. Stage 1 will allow eligible women to access mitochondrial donation by participating in the clinical trial. It's anticipated that a low number of people will access the technology, and the women who do participate may require multiple rounds of IVF. The trial is expected to take place over approximately 10 to 12 years, so this is a really slow and very careful process, but it will make such a difference to the families involved, to the women who fear passing on this condition to their children.

The process to get this to legislation has been very comprehensive, starting with a Senate inquiry in 2018. The government responded to the Senate inquiry report in February 2019, which led to the creation of an expert working committee in March of that year. And then, between September and November 2019, the NHMRC undertook community consultation on the social and ethical considerations of the possible introduction of mitochondrial donation in Australian clinical practice. Finally, the Department of Health conducted a round of consultation between February and March this year. So, for all those worried about this legislation, this has been a very thorough process, and I believe that the government has got the balance right on this legislation. I support the bill and commend the consultation process and, in particular, the minister for health.

There have been social and ethical concerns raised, and I acknowledge that some in the community may have ethical concerns around the right of the child, the status of the embryo, the role and rights of women donating eggs and community considerations, but I'm convinced that the consultation process has been thorough and that the balance of the advantages of mitochondrial donation outweigh these concerns. There are appropriate safeguards in place to mitigate ethical and medical considerations. They've been taken into account, and I support the advancement of science that will prevent the occurrence of children born with this disease that this treatment can prevent. This is one of those times when we have an opportunity in this place to make a very real and very significant difference to the outcomes and lives of so many mothers as they then approach their journey to motherhood and the families that that will involve, because this does impact whole families.

I thank the government for presenting this bill. I also thank them for making this a conscience vote. I wish we saw more of that in this place so that we actually had a more, I think, genuine debate and genuine approach to legislation so we can really talk about how meaningful they are rather than trying to make it a political fight. I commend this bill to the House.

Finally, I would like to finish by thanking Maeve's family, because they have been on an incredible journey like all the families that have been impacted by mitochondrial disease. They have been incredibly resilient and incredibly dedicated to ensuring that others are not met with quite the same challenge that they have gone through. They are doing an amazing job, but they would like to provide more optimism, a better prognosis, for others to make sure that they don't have to go through the distress and heartbreak that this condition can bring on families and children. So thank you to Maeve's family and to Maeve for being the namesake of this legislation that I hope will change many lives.

Fiona Martin (Reid, Liberal Party) Share this | Link to this | Hansard source

I rise to support the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. I thank the members before me for their contributions, particularly the member for Mayo and the members for Higgins and Macarthur for their medical insights.

This bill is about hope. I don't want to detain the House, but I would like to tell the story of the Catton family, who are constituents of mine, and their daughter, Alana. Reid constituent Toni Catton, who is the General Manager of the Mito Foundation, gave birth to her second child, Alana, in 2013. Very quickly, Toni noticed that Alana was behind on her developmental milestones. She was failing to thrive. After 10 months, the term 'mitochondrial disease' was floated. It was the first time Toni had heard of the condition, and she didn't know anything about it.

Toni was invited to take part in a nine-month research project at the Children's Hospital at Westmead, led by genetics professor John Christodoulou. Eighteen months after her initial diagnosis, shortly after Alana's third birthday, the Catton family's worst nightmare was confirmed. Medical specialists confirmed that little Alana had mitochondrial disease. It was also around this time that the symptoms of the disease began to take hold, and Alana began to lose motor functions. In the meantime, like every other parent who has just been faced with a terrible diagnosis for their child, Toni was introduced to the Mito Foundation and quickly learnt more about the disease, receiving information and support from the foundation. Here she learnt Alana's dire fate—that mitochondrial disease is a life-limiting condition with absolutely no cure. The childhood onset robbed her daughter of her life.

I was fortunate to have met little Alana in late 2019. Her mother, Toni, brought Alana to meet me at a mobile office in Concord in my electorate. What I saw was a beautiful young child in a wheelchair, a child trapped in a cruel reality of this horrible disease. As a mother with children about the same age, it broke my heart. There were no words for the sheer unfairness of what I saw and what this child has gone through.

Last year, Alana passed away just shy of her eighth birthday. Alana never really talked. Her muscle development was affected. Alana couldn't stand or walk or crawl or hold her own weight. She displayed dystonia and spasticity. She was fed directly into her stomach. Alana required full care. This is the reality of this disease. Alana's death was brought on by deterioration in the brain, and it was eventually her breathing.

Toni discovered that there were few treatment options and that prevention was the only option for children with mitochondrial disease. Toni says that mito donation is about saving life. She says that it allows a parent to have a healthy child that is related to them. For Toni and the Catton family, the mito bill doesn't change Alana's life or her family's experience. But they know it will have a significant impact on other families and could save up to 60 babies a year.

Alana had an older sister, who was three years old when Alana was born, and Toni's other daughter was also impacted by the experience of mitochondrial disease. As Alana's symptoms became more obvious, her sister had to face the reality of what was to come. Toni says that Alana's big sister became a real advocate for her and that she would make people understand that there was a real person there behind the horrible symptoms. Toni also says that no 10- or 11-year-old should have to go through the final stages of their little sister's life, Alana's life. Watching her sibling dying over 2½ days was absolutely devastating. Toni says that she and her family live with that every day, and there is a huge shadow left that can't be changed. She says that she tries to take joy from Alana's life, and she draws from that. She says no family should have to live with losing a child like that. Toni told me that legislation doesn't change Alana's fate; it doesn't bring Alana back. But, by advocating, it is her way of honouring Alana's life and helping other families.

This bill, called Maeve's Law, could also be called Alana's Law. It could be named after all the children who have been taken by mitochondrial disease. This legislation cannot return the children who have passed away from this dreadful disease, but it does give hope that no child in the future lives the reality of this horrible disease. I commend this bill to the House.

Andrew Leigh (Fenner, Australian Labor Party, Shadow Assistant Minister for Treasury) Share this | Link to this | Hansard source

It is rare that we have an opportunity in this place to cast a conscience vote. It occurs about once every term of parliament, the most recent being the marriage equality vote. In an era in which Australians are increasingly becoming disconnected from politicians, in which the levels of trust in government are waning, I chose to use this conscience vote as an opportunity to engage in a deliberative democracy exercise in the electorate of Fenner. I acknowledge the member for McMahon, who alerted me to the fact that this bill, the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021, was to come before the House, and, as a result of that conversation, I collaborated with the University of Canberra's Centre for Deliberative Democracy and Global Governance and the Institute for Democratic Engagement and Accountability at Ohio State University to put in place a series of town hall meetings, one online and one face to face, with randomly selected constituents in Fenner to flesh out the issues around mitochondrial donation and to inform my decision.

This was inspired by the Connecting to Congress project in the United States, which was run by the Ohio State University, but also by many other deliberative democracy processes that have occurred. The City of Melbourne used such an exercise to plot a 10-year trajectory for the city. The City of Adelaide is also using deliberative democracy processes to put in place a local planning frame. The Western Australian City of Greater Geraldton was the world winner for community participation and engagement with the United Nations International Liveable Communities Award, which recognised an exercise in deliberative democracy that they had done. The City of Canada Bay Council in Sydney's inner west put in place a participatory budgeting process, and I acknowledge their mayor, Angelo Tsirekas, who led that process. The Wyndham City Council in Melbourne's west has put in place deliberative democracy through appointing regular citizens to committees there.

As deliberative democracy practitioner Lyn Carson observes, deliberative democracy processes are 'a way to find out how randomly selected citizens without vested interests think about an issue when presented with detailed information from differing viewpoints and given support to discuss it in a non-adversarial way'. Successful deliberative democracy processes at a state level have involved VicHealth's 2015 Citizens' Jury on Obesity, which over a two-day period explored strategies to reduce the problem of excessive body weight. Its 78 jurors presented government with 20 recommendations, including food labelling, water fountains and healthier food in schools. In the ACT, in 2017 and 2018, the government used a deliberative process to consider possible reforms to third-party car insurance. Around 50 randomly selected jurors met for two weekends to define their priorities. An expert reference group devised four models to be considered. The jurors met again over two more weekends and finally voted in favour of a no-fault scheme. That scheme was put in place last year and is expected to save motorists over $100 on their insurance premiums and expand coverage by 40 per cent.

I go through these examples to illustrate the value of deliberative democracy and the way in which it can improve our decision-making as well as better connecting citizens to parliament. I've been particularly concerned this term about the issue of democratic disconnect, and the deliberative democracy exercise is just one of the ways I've sought to try and address it. Another major one is a series of tele-town halls, engaging with voters across the electorate on issues that matter to them in a way that is for many people more convenient than coming to the physical town halls that we conduct.

I want to acknowledge the researchers and the facilitator who assisted with these deliberative democracy processes: John Dryzek, Selen Ercan, Michael Neblo, Jon Kingzette, Amy Lee, Nick Vlahos, Wendy Russell, Nicole Curato, Nardine Alnemr and Hannah Mills. Their careful work helped ensure that the conversation stayed focused and respectful throughout.

I was struck by the willingness of Canberrans to engage deeply with the issue of mitochondrial donation and with the ethical, legal and scientific complexities behind mitochondrial donation. I was impressed that some of those who came along had taken the time to read up in advance, and it very much informed my thinking. There were issues raised about the surrogacy process and the impact on people who go through surrogacy. There was a genuine curiosity about the objections to the legislation. There were questions about whether the mitochondrial donation might change the child's DNA, and I think there was great reassurance from a recognition that the mitochondria—the powerhouses of a cell—wouldn't affect the sorts of genetically acquired traits such as hair or eye colour. There was a recognition that mitochondrial donation might be shaping the way in which parliament thinks about other genetic reproductive processes and an acknowledgement that each time we step forward on this it may have an impact on how we consider other issues.

There were some of my constituents who asked in the deliberative democracy forums about how their views would be weighed along with expert views and, I think, there was some surprise when I said that the views of the deliberative democracy forums would be the main prism through which I would consider the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. There was a feeling among many who attended the online forums that it was invaluable that parliament was moving ahead of this issue, recognising that, while Britain had done so, many other countries had not.

The overwhelming sentiment among those who attended the forum was to support mitochondrial donation, and I will be voting in favour of this bill. I recognise that wasn't a universal view; we weren't seeking unanimity, nor indeed were we looking to have a vote cast in the deliberative forums. That's not the nature of deliberative democracy. It is much more about the conversation and about being able to have these kinds of respectful conversations in the community—conversations conducted in non-partisan paragraphs rather than partisan soundbites. There was an acknowledgement that we are making decisions which are ultimately uncertain and that none of us can be absolutely sure about what will happen, but also that mitochondrial disease is often fatal and that the stories that others have told in this place—such as, of course, the story of Maeve—are tragic stories that no parent would ever imagine as anything other than their worst nightmare. It is with that spirit that many of us approach this conversation.

I would encourage other members of parliament to consider deliberative democracy processes when future conscience votes arise. I agree with comments that have been made earlier on in this debate: that we should have more conscience votes in this House. Occasionally, I will look fondly on the British Labour Party, with its three-line whip, allowing a position between 'Do whatever you like' and 'Vote the party line', in which members of the British Labour Party are encouraged but not mandated to vote a certain way on certain bills.

In those cases, and in the case of conscience votes, deliberative democracy processes can help to bring citizens into the public conversation. It's vital that we do this; all members of the House should be committed to it, but it is a particularly important project for those of us on the progressive side of politics—for those of us who believe that government does have a powerful role in improving people's lives. We on this side of the House are the party of Medicare, the party of the National Disability Insurance Scheme, the party that put in place the pension and gave it its biggest increase in more than 100 years. Therefore, it is incumbent upon progressive politicians—social democrats and those of us in the Labor Party—to be ensuring that we maintain trust in government. Because when people don't trust government then the small government claims, with the sort of rhetoric of Ayn Rand and Ronald Reagan, that 'government isn't the solution, it's the problem' and those sort of antigovernment views take root.

Progressives have to be engaged in that great project of building trust with the Australian people. We can do that through providing opportunities like physical and virtual town halls, through being there on street corner meetings and through engaging positively on social media with those who agree with us and those who oppose us. And there is an important place for deliberative democracy processes. I want to particularly thank the University of Canberra researchers, kicked off by John Dryzek, without whom the deliberative democracy process would not have been possible. It was a good academic exercise and it will build up the academic literature, but I'm taking some time tonight to talk about it with you, my fellow parliamentarians. I know that the door of the University of Canberra is always open. There are great deliberative democracy researchers in Australia who are keen to work with people on all sides of the parliament. There is an enthusiasm among the experts to engage with members of parliament and build the knowledge base and the expertise on deliberative democracy. I found it a terrific experience, and I hope that it is something that many more members of parliament will do.

Bert Van Manen (Forde, Liberal Party) Share this | Link to this | Hansard source

I thank the member for Fenner for his contribution. I think the overall tone of the debate on this very, very important matter has been very collegiate and very well thought out by all members in their contributions. Equally, as I reflect on this, I can't possibly imagine, and I have not met, a family who has been affected by the consequences of mitochondrial disease. Often when we speak on these things it is somewhat easy to speak on them when you know of people personally that have been impacted by various diseases or various issues that we discuss in this place on a daily basis. But I know what it is to see family members who have lost a loved one—albeit not at a young age, which is a common consequence for those suffering mitochondrial disease. We know these inherited genetic conditions significantly lower an individual's health and life expectancy, and, in many cases, can be fatal.

The consequence of parents losing a child at whatever age is devastating. This is where, for me, the ethical, moral and health questions that are raised by this bill are cause for serious reflection and consideration. I think the process the member for Fenner outlined, that he conducted in his electorate, is to be commended; I think that is extraordinarily well done by the member for Fenner. It is a terrific way of engaging with his local community. The question, I suppose, with any of these things is: is it going to solve the problem? We know from the science that there is no guarantee that this will solve the problem.

This, for me, is my concern with this particular process—particularly three out of the four processes that potentially involve the destruction of an embryo. I accept that, as we move forward and science continues to develop, and as scientific techniques and capabilities continue to grow over time, we will increasingly be faced with various ethical dilemmas—this being one of them. How do we treat the creation of an embryo that is then used to transfer the mitochondrial DNA from one embryo to another to prevent disease, yet at the same time destroy that donor embryo? I think that, for all of us, and certainly for me particularly, this is a difficult question to wrestle with. It is made more difficult by the recognition that since 2015, at least in the UK, these processes have been legalised. Yet there is very little, if any, information on the success or otherwise of these procedures. I understand that much of that is to protect the privacy of the families involved. From an ethical perspective, from my personal values and view, the MST process is probably the closest that I can come to being comfortable with this, in my consideration of this bill.

I understand that this bill seeks to introduce this process into Australia as a staged process, with clinical research and training over a period of time, to ensure that the process works, is effective and provides the results that are being sought. The risk of acquiring mitochondrial disease, as I have outlined already, can be devastating on the families involved. I am very conscious of that in my consideration of this bill. But I would seek to ensure that, in proceeding down a new path—only one country in the world has legalised this process to seek to help families, and we are without the information as to how that's going—we don't take risks that are unnecessary or deliver unintended consequences.

I have considered the information provided and I've considered the ethics and the morals of this very, very carefully. Other than, as I said, the MST process, I think it's fair to say, as a whole, I wouldn't support the bill in its current form. But I recognise fully the risks to the families involved and consider that very carefully in my consideration and deliberation on the outcome of this bill.

Debate adjourned.