Katy Gallagher (ACT, Australian Labor Party, Shadow Minister for Finance) Share this | Link to this | Hansard source

I'll start where I left off last night by acknowledging that the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 does raise concerns for some senators and, on votes of conscience, when the colours of party are stripped away, we stand here as individuals and we bring our own perspective and our own life experience to the chamber. I come to this vote as someone who has spent years working in the disability sector, I come to this vote as someone who has spent eight years as a minister for health and I come to this vote as someone who has experienced the death of loved ones and the deep grief that follows. But mostly I come to this vote as a mum of three amazing children, and I have read the stories from parents about their experiences of dealing with and supporting and loving a child with mitochondrial disorder.

I do support this bill and I really hope that it passes the Senate this week. I acknowledge the minister for health for his pursuit of these reforms and my colleagues the former shadow minister for health Chris Bowen and current shadow minister for health and ageing, Mark Butler, for working together on this bill and working across the chamber to draft a bill that has the greatest opportunity of passing the parliament. Much gets achieved quietly across the chambers in this place and, when that happens, good things are often achieved. This bill is an example of that, and there should be more of it.

It has taken years to get to this point, but it's now time to pass Maeve's Law and give parents the chance to have a family without the stress and distress of passing on a life-threatening condition. If the bill passes, it will prevent the birth of children who would otherwise be severely challenged with disabilities and illness and whose parents and families would find themselves in the often heartbreaking situation of loving and caring for a child with significant health challenges.

I think anyone who's raised a child knows the joys that it brings to one's life and anyone who has longed for a child and been unable to have one knows the pain that that can bring. From my point of view, this bill isn't complex. It gives some Australian families the opportunity to experience the joy of having children without the worry of passing on mitochondrial disease. The bill uses improvements in health technology, science, health policy and ethics to map out a small but significant way of improving the lives of our fellow citizens. This is why I will be supporting this bill. I see it as my job as a legislator to use this position of power and influence to help make a better, more caring world. This bill helps to do that.

Thank you to everyone who has worked to get the bill to this point. I really hope we can pass the bill this week and give you all the certainty you've been seeking for years when Maeve's Law becomes the law.

Claire Chandler (Tasmania, Liberal Party) Share this | Link to this | Hansard source

I rise today to provide some remarks on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021, known as Maeve's Law. In doing so, I would first and foremost like to extend my gratitude to my colleagues from all sides of this chamber and in the other place for approaching this debate in such a respectful manner. This is a complex piece of legislation which attempts to tackle a complex issue, and I recognise that there are a broad range of views, which have been raised throughout this debate. Our ability to do so in this place in such a considerate and measured way is a testament to this parliament.

This bill amends a number of existing pieces of legislation to allow for the introduction of mitochondrial donation in Australia for the purposes of research and, eventually, human reproduction under a national regulatory framework. The ultimate aim of this is to develop the technology to prevent the passing on of mitochondrial disease to future generations.

Mitochondrial disease, or mito as it's colloquially known, occurs due to mutations of mitochondrial DNA or nuclear DNA which impact the function of mitochondria, the part of every human cell that contains DNA. It manifests in a variety of symptoms, which can become apparent very early on in a child's life, including seizures, developmental delays, fatigue and muscle pain, vision and hearing issues, potential organ failure and, sometimes, death. There are currently no known cures. I've met with sufferers of mito, and there is no denying the significant pain and despair that they must endure because of this horrible disease. You can see it on their faces, in the visible pain they're experiencing just by doing the things that other people take for granted—going for a walk, drinking a cup of coffee, sometimes even just sitting upright in a chair. Mitochondrial disease is hereditary, and in the vast majority of cases this occurs through the mother. While it can vary depending on the genetic make-up of both parents, generally speaking, by my measure there's a 25 to 50 per cent chance that faulty mitochondrial DNA will be passed on to a child. If both parents have the gene that chance is effectively 100 per cent.

This bill enables a framework to research and, potentially, implement the use of mitochondrial donation so that a family with a genetic predisposition to the disease may have a healthy child. This practice was legalised in the United Kingdom in 2015 and involves the transfer of genetic material extracted from a mother's egg and the placing of that material into a donor egg which has its own genetic material removed but retains its own intact mitochondria. Under the framework proposed in this bill, the initial egg can be fertilised before or after the mitochondrial donation has occurred.

I'm not going to stand here today and assert that it was easy to decide whether to support this bill, because it wasn't. The concept of mitochondrial donation engages a number of different ethical questions, not least because we are attempting to regulate here something that is an incredibly new and not especially well-tested technology, and I note that many of those questions have been traversed and pondered by my colleagues in their contributions. But the key question for me personally is: do those questions and concerns outweigh the possibility of protecting future generations of children from inheriting this insidious disease? To be very clear, I worry about what might come next, and we in this place should never pretend that our actions in legislating today have no bearing on what might happen in a year or in five, 10 or 50 years time, because, of course, they do. I also worry about the untested nature of some of these technologies and what other health concerns might result from this fusion of DNA, because we have very limited data from the United Kingdom—where mitochondrial donation has been legal—as to what the long-term health prospects of such children might be. I was particularly worried about this bill allowing parents the ability to only implant male embryos. I sincerely congratulate my colleagues in the other place on amending this bill to remove the option for sex selection.

These are all genuinely held concerns and, judging by the correspondence I've received from many Australians about this legislation, I know that these concerns are held not just by me. But then I think about the concerns of those Australians who are suffering from mitochondrial disease, and particularly those sufferers who wish to have a child free of the debilitating ailments that they themselves have had to endure. I'm not a mother myself, but, obviously, I know plenty of women who are. I also know plenty of women who have struggled through infertility and miscarriage and the inevitable heartbreak that comes from not being able to have a child. And, as a woman, I don't think I can come into this place and deny other women—those who may be carriers of mitochondrial disease—the possibility of having a healthy child. And that's what this legislation provides.

I'm glad to see the further amendments made to this legislation in the other place, which have increased reporting requirements and safeguarding to the regulatory scheme for this research, and I will certainly be considering on their merits any further amendments which may be moved by honourable senators to that same extent. But, regardless of the success of any further amendments, I will be supporting this bill. And I hope that in future years we can confidently say that no Australian child will be born with the tragic burden of suffering from this awful disease.

(Quorum formed)

Sue Lines (WA, Deputy-President) Share this | Link to this | Hansard source

tor LINES (—) (): I must say I've listened with great interest to all of the debate that's occurred so far on this bill in the chamber and it reminds me very much of the debates we had in Western Australia when the state parliament moved the voluntary euthanasia bill, because it does actually for many people go to an issue of conscience. But, like many debates, what becomes a key feature of the debate seems to miss the whole intention. Certainly that occurred with the voluntary euthanasia bill. Despite that bill in Western Australia having the overwhelming support of Western Australians—I think something like 80 per cent of Western Australians supported the right of people with a severe terminal illness to decide the timing of their death—it was held up by, in the end, a handful of people. I'm not criticising them in any way; their views were passionately held. But it did get down to an issue of peoples' personal morality and what they thought was okay. The problem with that is that it's then balanced against these horrendous stories.

I have to say I started out feeling pretty agnostic about voluntary euthanasia. I didn't really have an opinion. I would have to say I was probably slightly uncomfortable with the concept, but it was when I started to read the stories and to meet the people whose relatives and friends had passed away in horrendous circumstances, in deaths none of us would want to imagine for anyone, that I started to see that actually this was bigger than someone's personal morality. This was giving people who wanted to do so the right to end their own life. Through that process, I met the most amazing young woman: Belinda Teh.

You might remember, if you followed the Western Australian debates, that Belinda's mother died of breast cancer very tragically and in a very painful way. Despite having the best of palliative care available to her, she had a very tragic death. Belinda was so motivated, moved and devastated by the loss of her mother at such a young age that she decided to raise awareness by walking from Melbourne to Perth. During that journey, Belinda herself became politicised. She was one of the key leaders of the community debate in Western Australia for voluntary euthanasia. I'm really proud to say that she worked as part of my team for several months. She's an extraordinary woman. But that experience that touched her mother changed Belinda's life. It's forever changed because of what she saw her mother suffer.

When I think about the mitochondrial debate, I look to the stories about those suffering from mitochondrial disease and those stories are equally horrendous. Most people who contract that disease inherit it genetically. It's a death sentence, and it's not an easy death sentence. The pain, suffering and trauma experienced by those who have the disease is horrendous and, seemingly, we don't have the treatments or the care to enable that suffering to be eased in any way.

I was very moved to read of a young Western Australian woman, Pippa. Her story is on the Mito Foundation's website. I was so moved by her story and her bravery that we contacted her family. Sadly, Pippa passed away almost two years ago—the second anniversary of that has just passed. We asked if I could read from Pippa's story, and they've given me that permission. I want to take some time in my contribution to do that.

In May 1997 … [Pippa] woke up in severe pain and unable to move … she was immediately admitted to Royal Perth Hospital and stayed for one month. Pippa was initially diagnosed with fibromyalgia (a form of chronic fatigue) and required intensive rehabilitation and physiotherapy to learn to walk again.

About six months later, Pippa woke disoriented, confused, and started to scream hysterically asking for someone to turn on the lights – which were already on. She was temporarily blind. Multiple seizures followed that were characterised by loss of consciousness and violent muscle contractions, resulting in a diagnosis of grand mal epilepsy.

On her twenty-first birthday, Pippa suffered a complete nervous breakdown with frightening hallucinations followed by a string of seizures.

It was at this point, after the tireless efforts of her doctors. that she was diagnosed with mitochondrial disease. After this:

Pippa and her Mum … both had muscle biopsies and MELAS … a maternally inherited form of mito, was confirmed. Later, her sister Toby also tested positive for MELAS.

As a result, Toby chose not to have children, not willing to run the gauntlet of potentially passing on the disease to her own children. Pippa's story continues:

Over the years, Pippa spent countless months in hospital and five times on life support when the family was told there was no coming back. Yet she kept her humour and shone in the face of adversity. She continued to celebrate other people's success and happiness. She was empathetic, compassionate and caring. … After initially being given a maximum of 12 months to live, Pippa proved to be an inspiration and bravely fought MELAS for 22 years.

The final 12 months of her life were unimaginably tough, as her health gradually deteriorated even further. Towards the end she suffered several stroke-like events, gut and bowel issues and declining cognitive function. Despite defying her doctors countless times, Pippa died almost exactly two years ago, on 4 February 2020, surrounded by her loving family and friends. The story concludes:

Although the last few years of Pippa's life were very difficult, the family managed 3 trips to Europe, several trips interstate and as many trips within WA that they could manage. … The whole family went on a trip to Melbourne on Pippa's 40th birthday which included a memorable overnight stay at the Werribee Open Plains Zoo …

Despite all that Pippa had been through, her family said she never lost her big laugh, which they all knew so well. Pippa sounds like someone that I would really love to have met. But, of course, what keeps families going in all of this, and it was exactly the same for those people whose stories I read in the euthanasia debate, is they want to remember the person before the illness, and nobody ever wants an illness to define the person. It seems to me that Pippa was able to strive above that, to continue to be Pippa, despite these horrific health issues that she faced.

What we know from Pippa's story and what we know from the other stories that have been told in this place is that mitochondrial disease is a debilitating genetic discord that robs the body's cells of energy, causing multiple organ failures or dysfunctions and sometimes, and I think often, death. There's no cure. Now, it might well be there is a cure in the future, and I hope that we keep dedicating medical research to that and let's hope there is a cure, but right now there isn't a cure. Current treatments aim to decrease the effect of symptoms but, of course, can't change the course of the disease. As we heard in Pippa's case and in other cases I have read, the treatments she had didn't really reduce the severity of the pain and disability that Pippa suffered.

One in 5,000 babies will develop a severely disabling and likely terminal form of mitochondrial disease. That's 56 births a year in Australia, more than one per week. This is why I support this legislation. It's why I really believe it's an important milestone for us as a parliament to vote on and to vote yes, because we're not forcing anyone to do anything. Just like the voluntary euthanasia laws in Australia or women's reproductive rights when it comes to termination, we're enabling a choice. It mightn't be the choice that any of us make but it will be the choice that other families and others individuals make. That's what I want to achieve in this parliament: to simply give people that choice and to focus our energy on cures and on easing the symptoms through pain management and of doing whatever else we can. But this is a course of action that not only stops the baby developing mitochondrial disease but it stops the genetic transfer so people like Pippa's sister Toby don't have to make that incredibly difficult decision not to have children, because she feared passing it on.

I would urge people: please, don't stand in the way of giving people that choice, that personal choice. Please don't let your morality or your beliefs stand in the way to stop other people from simply being given that choice. It may well be that some families with mitochondrial disease have the same view as some senators in here—that that's not a choice for them—and that's okay, but there will be many families who see their child suffering who would make that choice. I would challenge any of us in here, faced with the suffering of our own children or our friends' children, or even people like Pippa that I don't know, who would want people to have that level of suffering? I don't think any senator in here, regardless of your personal belief, would want that on anyone. So we have a choice here today, or whenever we get to finally vote on this bill, to end that suffering for people who choose this course of action or to continue to stick to our own moral beliefs and to foist them across the whole community. That isn't the role of us here as senators. The reason in the end I became a passionate supporter of the euthanasia bill in Western Australia was because on hearing Belinda Teh and other stories, on reading the Dying with Dignity stories and watching their videos, I realised it wasn't for me to impinge my views on them; it was for me, as a legislator, to enable that choice for others to take it or not to take it. We have a lot of laws on our statute books that give people choice: women's reproductive rights, abortion, voluntary euthanasia. If this bill is passed here this week, this will become just one of those laws that gives people a choice, a real choice. Imagine if this was available to Toby. I don't know how old Toby is; she may be past the age of wanting children. Let's assume she took this option up, it changes her life, and suddenly she's able to confidently make a choice to have children knowing that, if she uses this procedure, she isn't going to pass this debilitating disease on to the next generation, to her children, to her flesh and blood. None of us would willingly choose to do that; we just wouldn't. That's not a choice we would make—to pass a genetic disorder on to our children and watch them suffer. Watching your own children suffer is the worst thing a parent can do. As parents, we always think it's our role to protect our children—which, of course, it is—and to do the best by them. So I urge you to pass this legislation.

Sam McMahon (NT, Country Liberal Party) Share this | Link to this | Hansard source

In considering the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 a lot of people find it confusing. I'm a veterinary surgeon and a scientist, and even I found it confusing until I delved right down deeply into it. I feel that it's a little bit misnamed—'mitochondrial donation'. People equate it with organ donation. You may decide that, when you die, you want to donate your organs. The person who receives that organ gets that organ. It's donated by you. You've said, 'You can take that from me when I die'—hopefully after you die, not before!—and that person receives that organ and they have it until they pass away. Mitochondrial donation is not a donation as such; it's the taking of genetic material from one cell and putting it in another. It might seem like semantics but when people hear 'donation' I think they equate it with organ donation, which is a very-well-understood and long-practised technique.

I will go into a little bit of the science of it. The mitochondria, as others might have said, are little structures in our cells—they exist in all cells—and they're often described as the powerhouse or the engine room. They're the structures which essentially take what we eat and turn it into energy for the cell to function. Mitochondrial disease is becoming better understood. This is a fairly recent thing in terms of medical research; it's becoming a more-understood disease in recent times. There are various different types of mitochondrial disease. It's basically a dysfunction of the genetic material within the mitochondria, which leads to various manifestations. They can be extremely mild—so much so that the person with the condition doesn't even realise there's anything wrong with them—or they can be quite devastating, leading to the very early death of babies or children or long-term medical effects such as Senator Lines detailed with the case of Pippa. It was very distressing to hear about that case, and I'm sure that no-one would not have sympathy for someone who had to live with such a debilitating disease and a premature death. So that's the basics of what mitochondrial disease can do. It can range from very mild, to not noticeable to the person, to something that is incompatible with life.

What does mitochondrial donation do? You're basically taking a cell from a donor who doesn't have mitochondrial disease—a normal, healthy person. You're taking the genetic material from, in this case, an egg, because most of your mitochondria is inherited maternally—from your mother. That's not 100 per cent cut and dried, but the majority of it comes from your mother. This is generally passed on from mothers to their children. So you're taking two eggs: one from a donor who doesn't have mitochondrial disease and one from the mother who does have mitochondrial disease. You are removing the healthy DNA from the donor and implanting it. You are taking out the DNA that's in the mother with the mito disease and implanting the DNA from that healthy egg in the defective egg. Then you are fertilising it, and then it goes on to hopefully—this is the theory, but, as far as I'm aware, this hasn't been done to produce a normal healthy human—get a normal baby that has the mother's genetic material and the father's genetic material. Only the mitochondria will have the genetic material from the donor. That's the theory of it.

As Senator Lines said, there is no cure and no treatment for this disease. That's true, and this technique isn't a cure or a treatment either. There are actually about five different techniques you can use, and they do vary slightly. I know Senator Canavan is moving some amendments, and some of those go to the different techniques that are used, because there is concern amongst some people that in destroying a zygote or an embryo you are taking a life. I get that. It's not my concern, but I understand that is the concern of many. But the theory is you get this normal embryo, which then hopefully turns out to be a normal person without the mitochondrial disease.

Yes, there is currently no effective treatment and no cure, but there is prevention. There is definitely prevention. This goes to your morals and your ethics and to the question of whether you believe it's a person's absolute right to have a child of their own genetic make-up. I'm not going to argue that. My point of view, personally, is no: having a child is not an absolute right that every single person on the planet has. We all have a lot of things that we have burning desires for. I get that for some people that is having a child that is of their genetic make-up. But there are a lot of other people who have equally burning desires about various things. We know that in life you don't always get what you want. So I would argue that it's not an absolute, government guaranteed right for every single person to be able to have a child of their genetic make-up. But, as I said, that's an ethical and moral debate.

You can currently prevent mitochondrial disease. You can prevent it by diagnosing it in the mother or father, and that's something that I think we need to focus on. I think we're putting the cart before the horse a bit with this legislation, because this would only come into effect if you've been diagnosed with the disease first. So I think we need to put a lot more effort into genetic screening, so that people can know they have this disease—or one of many other genetic diseases—before they make the choice to have a child. I think that's essential because, if you know you have mitochondrial disease, there are a few choices you can make. You can choose not to have a child: 'Children are not going to be for me; I'm not going to have children.' You can choose IVF. You can still have a child that is of your partner's genetic make-up and a donor's, and you can carry that child and give birth to that child, so you have a child that's your child and that you've given birth to. Alright, it doesn't haven't the mother's genetic material, but, as we've seen for many, many years all around the world, that doesn't stop people from loving and raising children, so you've still got that option.

The other option, if you have a burning desire to have a child, is that you can adopt. That's something that I would also like to see more effort put into in this country: facilitating adoptions. There's a whole pile of babies, kids and teenagers out there who would love to have a loving family raise them, and adoption in this country is quite difficult, so I would like to see that facilitated as an option. It's not going to be for everybody, because, as we know, some people have that burning desire: 'This child must be of my genetic make-up.' But, for those who just want a child and can give a child a loving family home and a great life, we should be doing all we can to facilitate that before putting billions of dollars into developing techniques that can potentially give someone a healthy child. Let's not forget that this is potential, because this is still experimental. It concerns me that these laws have been in place in the UK for six years now and we don't have evidence that these techniques can produce normal, healthy children, so that is a bit of a concern. So I think we need to consider how much effort we're putting into these laws and this research compared to other things that we could be facilitating, such as adoption and IVF.

However, having said that, I think it's important that Australian researchers are given the opportunity to conduct world-leading research. It's something Australia does very well. We've been world leaders in a lot of different aspects of medical research. So I think enabling the research and the testing to occur is important. I know one of Senator Canavan's amendments concerns the second phase, if you like, so it allows the research to occur, so Australian medical researchers can start conducting this research in Australia, but it stops short of allowing some minister in some government in the future to make regulations. We're told it will probably be at least 10 years before this goes on to phase 2, with the clinical trials and the clinical application. I'm all for starting the process, not just because this technique could give a family a child of their own genetic make-up but because we really don't yet know what else this research could lead to. It could well be that some of the techniques that are developed with this research at some stage in the future could save humanity. So I really think it's important to start the research and to have legislation that allows that to occur, but I would like to see it stop short of legislating here and now to, as I said, allow some minister from some government at some stage in the future to make up the regulations which will then determine how this is clinically applied.

We've got time. This is not time critical. It is time critical to start the research, but it is not time critical to legislate for the clinical application. We've got at least 10 years and maybe even more. The UK hasn't done much in six years. So we've got time, and we can come back to the parliament in the future. That may be a few years. It may be 10 years. Whatever time frame it is, we can come back when we have the results of the research that the UK is doing and that our own researchers are doing. That can be brought back to the parliament, and the parliament can then make legislation. I certainly would support this bill with amendments, and one amendment that I would really need to see is that we split it. We can go ahead with phase 1, but it needs to come back to the parliament rather than just be delegated to a minister to make regulations on. So that would be a critical thing that I would need to see to support this legislation.

Kristina Keneally (NSW, Australian Labor Party, Deputy Leader of the Opposition in the Senate) Share this | Link to this | Hansard source

I rise to contribute to the debate on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. As acknowledged by Senator Murray Watt, who represents Labor's shadow minister for health in this chamber, Labor members and senators have a conscience vote on this bill. In my public life I've participated in many conscience votes, and I appreciate that the Australian Labor Party, in its rules and processes, acknowledges that there are certain matters that engage significant moral, ethical and spiritual issues, and that the most appropriate way to deal with them is to recognise that members and senators ought to exercise their consciences and vote accordingly. Usually, these are matters of life and death, such as abortion and euthanasia, though the Labor Party has also extended conscience votes appropriately in the past to matters pertaining to the removing of discrimination or to the granting of equal rights to persons regardless of sexual orientation. Today's vote is one that deals with matters of life and death.

Before I get to the bill, I want to speak briefly about my approach to conscience votes in general. My view of conscience and its formation is shaped by my Catholic faith. An often misunderstood view in the public is that all Catholic Church positions and teachings are infallible—that is, without error—and are therefore required to be followed without question. That is not quite correct. There are some teachings that are infallible, but the vast majority are not. In fact, the church teaches that Catholics have a duty to follow their conscience above all else, and no Catholic can be compelled to act against their conscience. To fully form a conscience, Catholics are required to consider both faith and reason, to consider the human experience, to consider the evidence that exists in the fields of science and other relevant fields, and to consider church tradition and scripture. In some cases, this process of conscience formation has led me to vote in accordance with the positions of my church—for example, when I voted to oppose the use of embryos in stem cell research. In other circumstances, I voted in contradiction of what my church taught, such as when the Keneally government in New South Wales brought forward a conscience vote to grant same-sex couples adoption rights—a bill that I supported and that passed the parliament.

I was aided in the process of conscience formation on this bill by participating in the Senate Community Affairs References Committee inquiry in June 2018, chaired by Greens Senator Rachel Siewert, where I had firsthand experience and opportunity to examine the issues, the evidence and the experiences of people who would be impacted by this bill. This bill proposes to legalise a technique that would assist women with a genetic condition known as mitochondrial disease to conceive a healthy, genetically related baby. Mitochondrial disease is a term that covers hundreds of conditions. It can be mild, with few or no symptoms, or it can be severe enough to be life-threatening. It can occur spontaneously at conception or it can be passed on by mothers who have mutated mitochondrial DNA. Fathers, generally, cannot pass on mutated mitochondrial DNA to their children because all mitochondrial DNA comes from our mothers.

Currently, women with mitochondrial disease have some options if they want to have children. Some women use IVF and donor eggs to avoid passing on the disease. Others choose IVF with their own eggs but screen embryos before implantation to select those with the lowest risk of carrying the disease. Some may choose to adopt or foster children, and some may choose not to become a parent. But some women with the disease see mitochondrial donation as another option to create a healthy, genetically linked child. The desire to have a child that is genetically related is foundational and universal to the human condition. Sadly, there are people who are not able to fulfil that desire owing to genetic conditions, medical infertility or social infertility. While my own situation of stillbirth is not perfectly analogous to the matters this bill covers, I note that my second child, my daughter Caroline, died of a condition that runs in sibling groups—a genetic condition for which there is no known clear cause or cure. Her death was a warning to me that any of my future children would carry a high risk of death as well, which in turn prompted our family to change our hopes and dreams in response to the children we would not have.

Knowing that the strong human desire to have a genetically related child will be unfulfilled, no matter the reason, brings great sadness. It can be profoundly devastating, and I'm sure I am not the only member of this parliament or the community to experience this sadness. Yet, per my conscience, I will be voting against this bill. In my conscience, while I can deeply and personally understand the desire of some parents with mitochondrial disease to access this process, I cannot support its legalisation at this stage of scientific evidence or while significant moral and ethical problems remain unanswered. The 2018 Senate inquiry into mitochondrial donation took evidence from people with mitochondrial disease as well as from medical and ethical experts. Our Senate inquiry did not recommend that mitochondrial donation be legalised in Australia.

One of my key concerns relates to the lack of scientific evidence on the impact of human beings and our DNA when mitochondrial donation occurs. The process of mitochondrial donation results in a baby with three people contributing to its genetic makeup, which is why the technique is sometimes referred to as creating 'three-parent babies'. In Australia the cloning act prohibits the implantation of a human embryo with genetic material for more than two people, and for good reason: we simply don't know the scientific effects on future generations of altering mitochondrial DNA. The Senate report went into this in some detail, noting this is 'a foundational question to be answered prior to any legalisation of mitochondrial donation'. In the United States, mitochondrial donation is expressly prohibited for this very reason. US law also makes clear that even if a clinical trial of mitochondrial donation were to be approved it would only be permitted on male embryos, so as to avoid unknown consequences on future generations.

There are also crucial questions that have yet to be examined. The Senate inquiry pointed to those. In the interests of time I will not go through all of them, but I will flag that I am also alarmed that legalising mitochondrial donation would overturn key safeguards in Australian law relating to the creation, use and destruction of human embryos. These laws exist because the parliament has previously determined the appropriate ethical limits that should exist on the use of human embryos. Yet successive laws—in 2002, again in 2006, and now—have kept moving the goalposts, removing safeguards and taking us another step down the slippery slope.

In asking the parliament to legalise mitochondrial donation, Minister Hunt is asking the parliament to overturn key aspects of the cloning act and other laws. For example, one of the techniques for mitochondrial donation involves the creation of a viable human embryo in order to harvest it for parts and then destroy it. Many Australians share the view that such action is morally objectionable and that it should remain unlawful in Australia. Even the cross-partisan Senate report acknowledged that the creation and deliberate destruction of viable human embryos for reproductive purposes is a new moral question that deserves significant community consultation and consideration. I do not see evidence that this consultation has happened.

For me, creating embryos for the purpose of harvesting and destroying them is a moral Rubicon I cannot cross. Some might argue this is no different to creating embryos for IVF, some of which may end up being destroyed. I understand that response. My response would be: the intention in their creation matters. Creating embryos for the purpose of creating new life is something I accept. Yes, some embryos may end up being destroyed through IVF just as some embryos created through natural conception do not survive to birth. The key difference is the intention. In IVF we are not creating an embryo, a new distinct human life, for the sole purpose of harvesting, experimenting on or destroying it.

Another concern I have about mitochondrial donation is that it can require the development of a human embryo beyond 14 days outside a woman's body. Growing an embryo in a laboratory for more than two weeks has been outlawed in Australia and many other countries for decades, recognising that serious moral and scientific issues start to arise after that point in human development. In my view, this is an ethical line Australia crosses at its peril. We could see serious repercussions in unexpected ways, including, I might observe, for a woman's right to choose options in pregnancy.

I noted that in forming my conscience I sought to rely not only on my faith but also on reason—on scientific evidence. It is significant to me that mitochondrial donation is a technique that has never been verifiably used anywhere in the world. The only jurisdiction that has legalised mitochondrial donation—the United Kingdom, in 2015—admits, 'We have limited evidence on risks and success rates.' Just consider that. That is undeniably true. In over six years no baby has been born in the United Kingdom using mitochondrial donation. There have been reports of donations in Mexico and the Ukraine, where there are no specific regulations on mitochondrial donation. Those reports are somewhat unclear, and in these cases the results have been not been publicly verified by medical science.

As I said earlier, the procedure is expressly banned in the United States. We know that the United Kingdom has granted 21 licences for mitochondrial donations since 2015, and as many as eight have been subsequently approved for treatment. However, there is no public reporting available of the outcome of those treatments. To put it simply, the science is not clearly available to answer the key questions—the foundational questions, as the Senate report said—of what happens if we alter human DNA in such a way as to create a person with three people contributing to its genetic make-up.

I do not come lightly to my position of opposing this bill. I also note there are amendments that have been circulated in the chamber, and I do take a view, in general, that those amendments seek to improve this bill. Nonetheless, I would like to be clear that, even if those amendments are successful, I will still vote against this bill. I do hope that those who are listening to or reading along with this debate today can appreciate the moral, ethical and scientific questions I have wrestled with during consideration of the committee inquiry and this bill. I do come with empathy—an empathy grounded in our shared human longing for genetically related children and an empathy grown from my own experience of losing a child to a genetic condition.

There can be no doubt that some people with mitochondrial disease suffer greatly. While some of us may have had analogous experiences, I acknowledge that we cannot fully understand what it is to live with mitochondrial disease. Nonetheless, as parliamentarians, we are required to bring all of our considerations—our human empathy, our examination of the scientific evidence, and our moral and ethical convictions—to this debate and to this conscience vote. No-one pretends that this decision is easy for anyone, whether that's those people who want the laws changed or those parliamentarians who might be grappling with these issues for the first time.

Some members of this chamber will indeed choose to support this legislation. I respect their views, but in my conscience, as I have laid out here, I cannot agree. For that reason, I will be voting no.

Sarah Henderson (Victoria, Liberal Party) Share this | Link to this | Hansard source

I want to begin my contribution by conveying my condolences to Senator Keneally. I wasn't aware of her loss, and I just wanted to say that I'm very, very sorry to hear your story.

Severe mitochondrial disease can have a devastating effect on families, including through the premature death of children; painful, debilitating and disabling suffering; long-term ill health; and poor quality of life. Approximately one child each week is born in Australia with a severe form of mitochondrial disease and often with a life expectancy of less than five years. Mitochondrial diseases are difficult to diagnose, and there is currently no known cure. Treatment options are limited and largely concern the management of symptoms. More severe forms of mitochondrial disease can have a devastating effect on families who prematurely lose children to the disease, and children who survive will often suffer from long-term ill health and poor quality of life. In Australia, approximately 56 children each year are born with a severe form of mitochondrial disease, and most will die within their first five years.

The Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 will assist those families affected by severe mitochondrial disease to use technology—assuming, of course, that the research and development stacks up—that will enable them to have biological children without passing on this debilitating illness. As we have heard in this debate—and this is the parliament at its very best, with a respectful debate about an issue of conscience, where all senators have the ability to express their deeply felt personal views—this is a very difficult issue. Mitochondrial donation is an assisted reproductive technology that, when combined with IVF, has the potential to allow women whose mitochondria would predispose their potential children to mitochondrial disease to have a biological child who does not inherit that predisposition. It involves a complex process to create an embryo which includes nuclear DNA from the man and the woman—the prospective mother—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.

The government's laudably narrow proposal is that mitochondrial donation in Australia be implemented in a two-stage process—and this is very important—which will provide for a cautious introduction of the technology. The first stage involves legalising mitochondrial donation for use in research settings and for reproductive purposes through one carefully chosen organisation subject to an extensive monitoring regime by the Embryo Research and Licensing Committee. The second stage involves permitting mitochondrial donation in clinical practice more broadly. This conservative approach brings Australia into line with the approach undertaken by the UK, where mitochondrial donation has already been legalised for the purpose of minimising the risk of transmitting serious mitochondrial disease from a mother to her child.

The government has consulted extensively on this bill with experts, scientists, clinicians and researchers as well as members of the community and advocacy groups. Notwithstanding its benefits, I recognise that mitochondrial donation raises vexed and very difficult ethical and moral questions about the modification of the human genome and the use of embryos purely for research and training, and that is why, of course, the government has rightly allowed a conscience vote on this issue.

Senator Keneally referenced IVF technology, and I'm very conscious that without IVF technology and all of the research and development into that technology thousands upon thousands of children would not have been born in this country, and of course that would probably run into millions around the world. IVF technology involves the creation of embryos, some of which are knowingly destroyed. That obviously is an ethical dilemma that each and every one of us has to grapple with. For me, I believe that IVF technology has been a game changer for this country and for thousands upon thousands of families, and investing in the research and development has changed the lives of so many Australians. For my part, I believe that the benefits of allowing mitochondrial donation outweigh the risks. Mitochondrial donation will not result in three-parent IVF, as has been contended. Children born using this technology still have only one father and one mother. The female donor contributes only healthy mitochondria and no more. No genetic material involved in the personality of the child and the characteristics of the child is inherited from the mitochondrial donor. Moreover, the bill expressly prohibits gene editing of either the nuclear or mitochondrial DNA of the child.

Donor rights and responsibilities for Australian mitochondrial donation egg donors will be largely aligned to current assisted reproductive technology regulations, such that these donors will not be considered parents for the purposes of the Family Law Act, and children conceived with the assistance of mitochondrial donation will have the right to apply for identifying information about their donor when they turn 18 years old.

I believe in my conscience the bill goes as far as is necessary to allow potentially life-saving technology to be used for the benefit of our children without spilling into the very murky ethical territory of human gene editing. I do also want to note that Senator Canavan has just provided me with some more information in relation to amendments that he intends to move, and I will, in good faith, consider those amendments as part of this debate, but I will be voting for this bill. I commend the bill to the Senate.

Karen Grogan (SA, Australian Labor Party) Share this | Link to this | Hansard source

I rise in support of the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. This is a matter of conscience for Labor senators and, I believe, the first conscience vote that I have participated in in my time here. My conscience tells me that we should allow this science to be investigated and developed here in Australia and ultimately allow the opportunity to save the lives and prevent the suffering of thousands of Australians.

Mitochondrial disease can have severe and profound impacts on sufferers. I would like to thank the Mito Foundation for taking me through the realities, experiences and stories of this disease and its impact on its victims and to recognise the enormous amount of work that they do to support people and their families suffering with this disease.

This disease affects around one in 20 Australians in some way, and around one baby a week is born with a severe form of it. There is no cure. Some people who are affected by mitochondrial disease are fortunate enough to not experience many symptoms, while others are completely and utterly devastated by its impacts. Whether it's enormous fatigue, developmental delays, seizures, muscle pain or hearing loss, these symptoms can have a debilitating effect on a person's quality of life and a resultant impact on their family. Fundamentally, mitochondrial disorders impair the body's ability to produce energy, and so mitochondrial disease can affect every organ in the body, as every organ needs energy to function. This is most severe in the brain, which uses an enormous amount of energy. Issues in the brain can have a devastating impact on our lives.

Mitochondrial donation gives us an opportunity to fix the problem before a person is born and before the lifelong effects of mitochondrial disease begin. This treatment, as we've heard from many others, is fundamentally an assisted reproductive technology. It doesn't end the suffering of people who are suffering from mitochondrial disease today, but it might prevent the next generation from experiencing that pain.

I acknowledge and respect the concerns that have been raised by some in this chamber and by stakeholders and some members of the public. But we need to be very clear: this is not a process to select the characteristics of your baby; it is a very specific clinical process to save lives. This is a relatively new set of procedures. The UK remains the only country to date that has changed its laws to allow for mitochondrial donation, and that was only in 2015. An update from one of the research organisations in the National Health Service in the UK has provided advice that their progress has been delayed due to COVID-19 but that their progress so far has been very positive. We don't have the benefit of lifelong experiences of people born after mitochondrial donation procedures were performed, and so we do need to be cautious, but we have no shortage of stories from people who've spent their lives struggling with mitochondrial disease. We know the devastation it can bring to sufferers and their loved ones.

To their credit, the government have undertaken a thorough process to get us to this point. The Community Affairs References Committee of this Senate considered the issue in 2018, taking public submissions and issuing a series of recommendations for further examination. The National Health and Medical Research Council explored the issues in 2019 and 2020 through its Mitochondrial Donation Expert Working Committee. This bill was the result of a process of consultation undertaken by the Department of Health last year. So it's clear this process has not been rushed; nor has it been a tool for scoring any sort of partisan or ideological points. By contrast, it has been thoughtful and considered, and the bill it has resulted in similarly reflects a considered and cautious approach.

The bill would not immediately legalise mitochondrial donation. Instead, this bill provides for a two-stage process. Stage 1 is expected to last for some 10 years. Only a limited number of licences will be granted for mitochondrial donation for research and training. They would not be available for general clinical use and will be closely monitored by the special committee of the National Health and Medical Research Council. Only at stage 2, well into the 2030s, will mitochondrial donation become available for clinical purposes. Even then, the states and territories will need to opt into the scheme and will likely need to undertake their own legislative processes to do so.

I know this will be cold comfort for those families currently suffering with mitochondrial disease, and it will be especially tough for those who want to start their own families but know that doing so will carry the risk of their children being affected by this disease. It will be especially tough for those who are looking at this situation and are dealing with the day-to-day effects of this disease on their current children. But, on balance, I support this approach. It gives us certainty that we will understand the long-term effects of this incredible technology while also providing hope to affected families.

There are quite detailed provisions relating to records which will need to be kept and maintained relating to the children born through these processes. I think that is very important not only for the scientific study and research purposes but also for the rights of the children born through this process.

In closing, I want to reiterate my support for this important piece of law reform. I also want to pay my respects to the Australian science community and the truly amazing work that they do on so many issues. They have the talent and the patience to bring the science behind mitochondrial donation to fruition and to turn hope into reality for a lot of Australian families.

Tim Ayres (NSW, Australian Labor Party) Share this | Link to this | Hansard source

The vote on this bill—the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021—is, in fact, my first opportunity to participate in a conscience vote in this parliament. The operation of a conscience vote has got a long history in this parliament. It has covered many matters. Contemporarily it's understood to deal with matters of life and death and matters of faith, but historically it was used as a matter of convenience up until 1963. Questions about tariffs and matters of trade and economic questions were conscience votes in this parliament. It's hard to imagine that being the case now.

The conscience vote has, of course, a long history in the Australian Labor Party and the Labor movement. In my view, it's critical for the functioning of our democracy. As my friend, Senator Gallagher, said earlier, it's an opportunity for people to participate in this debate without our party logos on, applying our reason, our value sets and our various faiths to these questions. It has been critical, I have to say, in terms of maintaining Labor unity and unity on the progressive side of Australian politics. It has allowed us to focus on our historical mission to lift living standards, to deliver economic growth and to build a stronger, fairer economy but also, on these narrow questions of conscience, to allow members and senators to express their views.

In that vein, I've taken this matter very seriously, and taking it seriously means taking the views of other senators seriously in this debate and respecting the very diverse sets of views of other senators both across the chamber and within my own party. It also involves not taking the views of others for granted based upon their faith background or their lack of faith background. In my view, it is possible for people of deep faith—that is, those whose faith informs their views about the sanctity of life and about the relationship between the dignity of individual lives and the collective interest, or state action in the national interest—to fall on either side of this argument and to speak and vote either for or against this legislation.

In terms of the caricatures that some people draw of them, it's possible that secular progressives, who are also mobilised by deep ethical considerations, concerns and frameworks, could also legitimately appear in today's debate and argue the case either for or against the legislation. Identity politics is dangerous and there's been too much of it over the last few decades, on the left and on the right, in terms of drawing caricatures of different people's positions. There should be a lot less of it. I think my friend Mr Jones's speech yesterday in the House on the other matter that's before this parliament was an illustration not only that Australia is more complex, more diverse and more of a patchwork than it's convenient for some of the people in our leading newspapers and some of the people in our political firmament to describe but also that Australians themselves as individuals hold quite diverse and thoughtful views on these subjects. Most Australians fall cheerfully between these identity politics caricatures of what people's views are supposed to be in relation to any issue.

I think the responsibility when there is a conscience vote is not to just assert a view based upon the values and the ethical background that you bring to the debate, but to bring some precision to one's own thinking when one considers these issues. To be really clear, not just in terms of moral clarity, I think it would be a profound error to make a values based decision about exercising one's vote if a senator is ignorant of the precise details of what is being proposed for senators to consider. And I have to say that, if I were confronted with a piece of legislation here that had aspects of genetic modification, such as cloning or gene-editing technologies, I would find those practices deeply problematic. I would have deep objections that would be difficult to overcome, if those issues were raised by the legislation before us. But I have come to the view that this piece of legislation, which has been carefully developed, does not engage with those issues.

The kinds of processes that are being proposed to be made lawful here, in terms of both research and clinical practice, don't alter the personal characteristics of future babies and future humans in any way; they just resolve this narrow question of whether a baby has properly functioning mitochondria or not. I think that's what this Senate should engage with—not in anticipation of other debates that might be occurring, in terms of the future of gene technology, and not shaped by views of past debates that have been won and lost in this place, but by the precise question that this bill engages. I don't accept the slippery slope argument that's made by some opponents of this legislation. As we evolve and as scientific research and clinical practice evolves, this parliament has to be able to make decisions about the right processes, the direction of regulation, and I don't accept that making this decision here will have any impact on future decisions that the parliament makes.

It is put by opponents of this legislation that there is some uncertainty in future research, and I accept that it's the case that there are some areas of uncertainty. I don't have the scientific capability to describe those here for you today. But that's why this is a two-stage process. That's why there are gates and proper evaluations. There are some certainties, though. If we don't adopt the approach that's outlined in this bill, there is no hope for the one in 5,000 babies—around one a week—who are born with this invariably fatal condition. We can't, in my view, be remote from that fact. It is a good thing that the legislation is named after a little girl. You can't have a cold heart when you look into the eyes of little children. We have to, in my view, consider that and not turn away from the reality for those little kids and their families.

This is a signature piece of legislation for Minister Hunt. I know that the Prime Minister has indicated his support for the legislation too. It's a signature piece of legislation. I know the Prime Minister may not want to have a policy legacy, and he's very unlikely to have one, but if this piece of legislation is achieved Minister Hunt will have a policy legacy, and it will be in the happy lives, the laughter and the growth of little children who haven't been born yet.

The scale of community consultation that underpins this legislation is absolutely appropriate. On the Labor Party's side, the scale of caucus debate and consideration of all of the different views on this question—which, as I've said, I deeply respect—has been excellent. I particularly want to highlight the role of the member for Macarthur, Dr Freelander, in his previous life a consulting paediatrician, in my colleagues' deliberations on this matter. Not only have his decades of experience in treating children with mitochondrial disease enriched our collective discussions and the public discussions on this question; in private, Mike has been a source of great support and somebody who's been able to answer questions both from me and from others.

Of course, there have been other complex questions on these issues that have been considered by previous parliaments. There have previously been debates in this chamber about reproductive technology, and this debate of course will not be the last. I will point to just one of those debates. The debate about whether or not in-vitro fertilisation treatment could be researched and then enter clinical practice in Australia was instructive. Under the direction of Carl Wood and Alan Trounson, Monash University researchers achieved the world's first IVF pregnancy, in 1973, and the birth of the third IVF baby, in 1980. They are pioneering scientific achievements. Tens of thousands—possibly hundreds of thousands—of happy, healthy children have been born to parents who might not otherwise have been able to conceive. And Australian parliaments were amongst the first in the world to develop and pass legislation and a regulatory framework to govern IVF treatments. It was the Hawke government that established the National Bioethics Consultative Committee in 1988 to address, amongst other things, surrogacy; information in relation to donated eggs and sperm; and genetic counselling.

One in 20 babies born in Australia today is a result of IVF treatment. And that is a good thing. It was controversial at the time. It is still controversial for some members and senators in this place, but it's been widely adopted. It is a good thing and it has enriched the lives of countless thousands of Australian families. The Senate should view this piece of legislation in that vein. This is an opportunity, in what will inevitably be a squalid end to this term of parliament as the government creeps towards calling an election, to do some good that will enrich the lives of little children and families all over Australia and give them some hope.

Marielle Smith (SA, Australian Labor Party) Share this | Link to this | Hansard source

I rise to make a brief contribution to this debate on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. I won't go into the bill in depth, as other speakers have done; its main components have been well-canvassed by both sides of this debate. But I do want to put on the record for my constituents my reasons for supporting this bill. From the outset, I wish to be clear that I have not come to this position quickly, I have not come to it with perfect ease, and I have not come to it without some reservations. And I'm grateful to all who provided me with counsel as I worked through the bill's merits and the challenges it presents. I absolutely respect the deeply held views on both sides of this debate. I want to state for the record my deep respect for the views of my colleagues who, for reasons of their faith or for other ethical reasoning, do not feel able to support this bill. I feel personally that I am able to reconcile my own deeply held faith with this bill, but I very much understand why others may not be able to.

These are complex questions. Indeed, they are some of the most complex questions in, and of, life. They are asked and debated not just in this chamber but in our community as well. Of course, beyond these issues, there is still so much we don't know about mitochondrial transfer. There are some risks that are impossible to quantify until research is allowed in a regulated, structured way. I understand and respect the concerns of my colleagues here, too—I do. But, on this vote of conscience, my conscience is telling me to stand for the mothers and fathers for whom this bill offers hope—hope to replace fear, hope to alleviate pain, hope to provide some comfort in their grief.

I am a mother blessed with two wonderful children, who are a miraculous and wonderful blend of my husband and me. Whilst my pregnancies weren't without their serious challenges, we never faced the heartbreaking choices that have befallen so many families who haven't been able to conceive as they had hoped they would—those who've had to turn to stressful and saddening rounds of IVF which never resulted in a baby to love and to hold; and those friends of mine who have loved, and lost, children with a genetic disease they had no idea they were a carrier for, and who had no way to prepare for or to respond to the world-shattering grief and pain that lay ahead for them when they later lost their child. If I could do anything to take that pain away, I would. For the parents who carry the burden of possibly passing on the potential for this disease to befall their children, perhaps this is what this bill will ultimately achieve—hope of taking that pain away.

This is the hope that this bill offers. As a legislator, I can see the challenges and complexities that this bill presents to us for many different reasons—for very valid reasons, which go to very deeply held beliefs, for many people. But, as a mother, as a sister, as a friend and in my good conscience, I choose to vote for the hope and the progress that this bill has the power to bring.

Patrick Dodson (WA, Australian Labor Party, Shadow Assistant Minister for Reconciliation) Share this | Link to this | Hansard source

DODSON () (): I rise to speak to the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. I've listened to colleagues across the benches and heard much of the angst and pain that we know is associated with this particular illness. I've given this bill some deep consideration. I've read carefully the submissions of those who support it, those who have guarded reservations and those who have outright opposed it. I am by no means an expert in any of the complexities that arise in contemplation of the particular disease or of the methodologies of the science that goes with this, and I have respect for all those of differing opinions and positions. That's why, I suppose, this is a conscience vote. I have no right to examine the consciences of others or to interrogate their beliefs that are genuinely held. But, in the end, I have decided I will vote for this bill. I am untroubled by that decision, but I feel I owe a short explanation as to why I arrived there.

While I respect the views and conclusions of those who oppose the legislation, I must say from the outset that I do not support arguments that mitochondrial donation would lead to dystopian scenarios like the development of designer babies. While I acknowledge there are serious moral and ethical reservations, I can't accept the third-party caution that opponents of this bill espouse. I prefer to accept the views of scientists as represented by the peak body, Science and Technology Australia. In their submission to the inquiry by the Community Affairs Legislation Committee they said:

The concern that mitochondrial donation would result in "three-parent" children is not founded in scientific fact. Placing the DNA of a mother's nucleus into a donor egg does not significantly change the genetic makeup of the child.

But it does prevent mitochondrial DNA defects from being inherited by the child. That would have to be something wonderful.

I'm comforted by the extensive consultation and scientific reviews that have preceded this bill and the proposal to stage its implementation by starting with clinical trials. I've canvassed the range of religious, philosophical, biotechnical, bioethical and forensic arguments about mitochondrial donation, and I've acknowledged the risks and uncertainties that attach to it, but I have faith in the skill, integrity and authenticity of the medical profession to manage those risks and uncertainties not only in the best interests of their patients but in the best interests of humanity. I truly believe that any risk is ultimately outweighed by the benefits that mitochondrial donations will deliver.

In the end, my decision to support the bill is driven by very practical considerations and influenced by the practitioners who have treated and cared for those affected by the consequences of mitochondrial diseases. Last night, as I wrestled with the pros and cons of some of these matters, I received a text from a very, very old friend, who had dragged me away from being taken by the police as one of the stolen generations over 60 years ago and who had never bothered to contact me in politics. She was asking for my support because of her dealings with this matter as a nurse and a health professional over many years. I'd already made my decision by that time, but I was supported in my own grapplings with this by someone I knew and trusted and who had practical experience of these matters. I was in the right space.

If it is in the realm of medical science to save a baby from disabling disease or death, which is the certain prognosis of this mitochondrial disease, then I say it behoves us to embrace that science. But the practice of that science must be subject to strict regulatory oversight. I support the bill and I recommend it to the chamber.

Jenny McAllister (NSW, Australian Labor Party, Shadow Cabinet Secretary) Share this | Link to this | Hansard source

I rise to speak in support of the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021, which seeks to enable mitochondrial donation. I don't intend to detain the Senate for very long, but I did think it important to place the reasons for my support briefly on the record.

More than once a week, a baby is born in our country with a truly debilitating form of this genetic disease. It robs the body's cells of energy, it causes multiple organ dysfunction or failure, and sometimes it causes death. Each week, up to 30 children who are at risk of developing a mild or moderately disabling version of this disease are born in Australia. It's very difficult to diagnose. There are currently very few effective treatments against mito.

One of the features of the last few years in the pandemic is that so many of us in this place have had to confront illness and disease. Wherever individuals in this chamber have landed on this bill, I know that we all recognise the suffering endured by a parent who cares for a very sick child. Too many of us have had to have those conversations in recent years.

Mitochondrial donation offers hope for a woman at risk of transmitting mitochondrial disease to her child, and it also offers hope to her partner and to her broader family. It is unquestionably a remarkable moment in science. It's one which offers immense benefits to those amongst us who have suffered from this disease. As humans, we have been gifted with the capacity to build and extend our knowledge, and in our lifetimes we have witnessed extraordinary developments in scientific capability. We have also been gifted with a capacity both for reflection and for foresight. Whilst I'm not a person of faith, I am in the camp that often counsels caution about new technology. We should always consider the social and ethical consequences of adopting new technologies. In this particular debate, I am grateful for the many people who have engaged deeply over many years in public discussion about the ethical characteristics of this technology and who have assisted in defining the regulatory safeguards and systems which are proposed in this bill.

All new technologies present risks. As humans, we have proven ourselves capable at times of using technology in the most disastrous of ways. Our only path, as I see it, is to avail ourselves of our immense capacity for ethical deliberation and for human empathy, and to consider the ways that we might best use technologies to serve our communities. My instinct is that this must be a profoundly democratic, deliberative process. In the end, as we have seen in example after example, it is rarely possible to shut the box on a new capability. Our only path is to work together to talk about how we might use a new capability and to make sure that we are collectively comfortable, that it fits within our broader goals and our aspirations for ourselves as a community and as a people.

One of the strongest characteristics of the bill before us is its capacity to enable further discussion and debate about the application of this technology. It provides a legal framework to allow the continuation of research on mitochondrial donation and its application in a clinical environment. It contains safeguards which define and constrain the application of the technology. As the EM explains, it introduces this technology in a staged and controlled manner, with a two-stage implementation approach. This is intended to allow for the expansion of scientific evidence to ensure that the techniques are safe and effective and are undertaken in an ethically appropriate manner.

As I said, in its regulatory design, it specifically enables a continuing public conversation about the technology at hand. Ultimately, though, it is a technology that has the capacity to alleviate real suffering. It gives Australians who have this disease the opportunity to raise a healthy family. It's on this basis I will be supporting the bill.

Anne Urquhart (Tasmania, Australian Labor Party) Share this | Link to this | Hansard source

I'm pleased to have this opportunity to speak in support of the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. A lot of what I will say has probably been said, but I did feel the need to put my voice to this because I do support the bill, and I do support the outcomes this bill will achieve for parents, children and people in our community with mitochondrial disease.

Today I don't speak on behalf of my whole party; I speak as an individual senator, because this will be a matter debated and voted on as a conscience vote—a free vote. We know that. We know the members of my party will have a conscience vote on this matter. As I said, I felt the need to put my voice on the record for this. It's consistent with the way in which the Labor Party has treated issues around embryo research since 2002. There are matters of conscience around embryo research and matters that deal with abortion which are free votes. That decision is not made lightly, and I trust that I speak for my fellow Labor senators when I say I really appreciate the opportunity with which we are provided and the consistency of our party's approach on these matters.

The bill is appropriately named Maeve's Law after Maeve Hood, a young girl from Victoria with mitochondrial disease. Mitochondrial disease is a debilitating genetic disorder that strips the body's cells of energy, causing multiple organ dysfunction or failure and, quite often, death. It has no cure, with treatments currently available aiming to decrease the effects of the symptoms. At present, these treatments do not significantly change the course of the disease. That's why I support the passing of this bill. I hope it does pass this parliament.

We know around one in 5,000 babies born in Australia—that's more than one baby a week—will develop a severely disabling and likely terminal form of this disease. Most of these children will die within the first five years of their life. It's hard when you grapple with that. If you're a parent and you know there may be an opportunity to save your baby, would you not put that forward? I think that's the opportunity we should make as legislators, in giving that choice to those parents through supporting this bill going through the Senate today.

Mitochondrial disease is caused by a defect in the baby's mitochondrial DNA, which is a type of DNA that is passed only through the mother. It is passed on through the egg cells rather than the sperm cells. Our mitochondria help translate the food we consume into energy to enable our bodies to operate effectively. Mitochondrial donation involves replacing the mother's mitochondria with mitochondria from a donor egg. Mitochondrial DNA does not influence characteristics such as height, eye colour or intelligence. All these characteristics are determined by the nuclear DNA, which is not impacted at all by the donation process.

We've heard today, and through the many inquiries and reports that have brought us to this place, much about all the technical and ethical issues that the bill raises. These issues are of concern for some members. I appreciate those concerns and I have considered them deeply, but I hope that today, in the vote we will have in this place, we will reach a point where we decide that this bill is about people. It is about people attempting to save their children from a terrible disease. It is about babies. It is about very young children and their parents, grandparents and wider families. It is about relieving suffering and giving children the opportunity to live a normal healthy life and realise their full potential.

My view is very much informed by the knowledge that mitochondrial DNA is distinct from nuclear DNA, which makes up the overwhelming bulk—as much as 99.9 per cent—of a person's DNA. It is the nuclear DNA which determines what we would understand to be a person's unique characteristics—their looks, their personality. Mitochondrial DNA constitutes one one-thousandth of a person's DNA, and its basic function is to convert food and oxygen into energy. Some describe it as our battery pack. Whereas nuclear DNA goes to make-up what we understand to be the unique characteristics of a human.

I note that we as senators must grapple with the fact that this bill raises issues that must always be considered in relation to science and health care. These issues are as old as medical science itself, and we continually hear about looking at the science and the medical advice. The    questions are: How much should we intervene? How far should we go? Is this a move towards designer babies? I do understand that some members of my community hold ethical and faith based beliefs which make consideration of this issue very difficult for them personally.

Personally, I find comfort in the fact this bill is consistent with the definition of embryo under the law in Australia. Both of the two main approaches to mitochondrial donation—pronuclear transfer and maternal spindle transfer—probably do not involve activity undertaken at the point of an embryo. I think everyone in this chamber recognises that this raises very sensitive issues. We are dealing with a disease that too often is fatal for very young members of our community, causing enormous grief and real suffering to their families, their friends and their extended families, and we're dealing with some deeply held serious ethical and faith based beliefs.

Mitochondrial disease is an incredibly serious genetic disorder, which is, as I've stated, often fatal for very, very young children. Energy-demanding tissues, such as brain and muscle, are most commonly but not exclusively affected. In Australia, the incidence of mitochondrial DNA mutations is predicted to be at least one in 250, with several hundred families already diagnosed, although many carriers remain unidentified. Some families have multiple generations of affected individuals, often with devastating consequences. Their healthcare needs present enormous emotional, physical, social and financial burdens on families, leading many couples to seek options to prevent disease transmission to their offspring. Currently, their choices include voluntary childlessness, adoption, using eggs donated by unaffected women or prenatal and preimplantation genetic diagnoses.

I believe that this legislation, Maeve's Bill, is well designed and well considered, balancing the extraordinary potential emerging technologies—and we have a lot of them in this country and across the world—that we have to improve our medical practice and the quality of life for a number of Australian families while recognising the ethical issues that are posed for many Australians and the need to tread carefully through this in a slow and staged process. It is clear that mitochondrial donation can significantly reduce the risk of maternally inherited mitochondrial disease transmission to children. For some families, it proves their only option to have unaffected genetically related children. Here in Australia we certainly have the clinical and the scientific expertise to introduce mitochondrial donation in a highly regulated environment—that is, if Maeve's Law passes both houses of this parliament.

I know there have been contributions over the last couple of days in this place that tell stories of some of our senators who met with families and talked to families about what this means to them. I don't have any knowledge of those families; I don't know the families, but what I know in my heart is that, if my child were affected or a child that I know or, in fact, any child, I believe they have the right to make the decision. Therefore, we should make the law that allows them to have the right to make the decision whether they go ahead with it or not.

I believe that a cautious and staged approach overseen by a licensing committee is appropriate. It flows from deep consideration over several years. I want to acknowledge here the work done by my fellow senators on the Senate Community Affairs Legislation Committee for the inquiry and the report that they produced into the matter in August 2021. There is a long way to go in developing the protocols, the techniques and the understanding of this research, but it does provide real hope to many families across Australia that we know have children with this disease.

I already indicated at the start that I will be voting in favour of this bill. Recognising that these issues are not easy for many members of our community, I am convinced this legislation is worthy of our support and that, ultimately, it will lead, through a careful and staged approach, to a reduction in suffering and disease for children and families, who'll have the freedom to realise their potential and make the fullest contributions to our society and the world. That's something that I think we all want for not only our own children but children in general. We want them to meet the fullest potential that they can.

In my work as a senator, and in my personal life, I've known and provided what support I could to many families dealing with the agony of witnessing the suffering and death of a child from various chronic or genetic illnesses. As I've said, I don't know a family with mitochondrial disease, but I do know of other families with children who have either died or are suffering from chronic and genetic illnesses. I think the opportunity for us to be able to provide the mechanism for those families to make a choice about making that better for their children is something that we should not hold back on. We should allow this bill to pass. Witnessing that same suffering, the deep grief and the same gaping hole in the life of a family and a community when a life is lost, I firmly believe that it is our job as leaders in our community to do whatever we can ethically do to reduce that pain and terrible suffering that parents and families have at the loss of a child. I will definitely be supporting this bill.

(Quorum formed)

Don Farrell (SA, Australian Labor Party, Shadow Special Minister of State) Share this | Link to this | Hansard source

I rise to speak on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. Excuse my voice; I had COVID over Christmas and, while I've fully recovered, for some reason my voice hasn't got back to its usual force. I apologise if I'm—

Yes, I'm sure you will, Senator Seselja. Like all issues where we get a conscience vote in this chamber, this is an extremely difficult issue, and I very much appreciate the fact that my party has a generous view when it comes to the issue of conscience votes—particularly where there are issues of life and death, but also more generally—and that there are opportunities for people in the same political party to accept the proposition that there are people with different points of view and that you get a chance not only to express those different points of view but also to vote in accordance with what your conscience is telling you on a particular issue.

In the time that I've been here, there have been a number of these issues. There was the issue of euthanasia as it related to the Northern Territory and the Australian Capital Territory. That was a very divisive debate, I have to say, but again it was an opportunity to express a point of view based on my own personal beliefs. I've also had the issue of same-sex marriage while I've been here. Again, those have been issues of great import, and I welcome the fact that my political party has given me the opportunity to exercise my conscience when it comes to those issues.

The issue that relates to this bill, in respect of mitochondrial disease, again raises significant and deep issues for our community to give consideration to. I'm aware that when this bill was debated in the lower house there was majority support for it, and it now comes to the Senate for a final determination of the issue. I've tried to reach out to both sides of the debate and talk to people in those communities which have an interest in this issue to try and inform myself, to the best of my ability, as to what the issues are and what the concerns of the people on each side of the debate are. I've tried to speak to them directly and get a sense of what it is that they are seeking to do by either supporting the passage of this legislation or opposing it.

I have to say that we have great sympathy for parents of children who have this condition and great empathy for the situation in which they find themselves: dealing with children with this condition. From their point of view, it's very heartbreaking to see the circumstances in which their children find themselves. But there are other considerations, I think, that other people have raised, where there are fundamental issues of life and death that need to be taken into account. Those people have raised issues about changing the DNA of individuals, and the long-term and unknown effects that changing that DNA might have on the community.

One of the points that has been influential in my thinking came from discussing it with an ethicist in South Australia who's familiar with these serious issues and has spent a lifetime dealing with them. That point is that, in this process, we change the DNA not only for one generation but also for all future generations. This is an issue not just about the effect on one individual; this is an issue about what effect it's going to have on future generations. You've got two issues competing: on one hand, you've got the issue of what do you do with parents who find themselves in these very difficult circumstances; on the other hand, there are broader issues for the community to consider about the long-term effects of giving approval to legislation that can affect people not just for one generation but also for all future generations. I've tried to balance out these concerns, noting that it's an extremely difficult issue, and I've tried to listen carefully to the contributions of other people—both those who are in favour of the legislation and those who are of a different point of view. I've finally come to the view that I will oppose this legislation, but I want to make it clear to those people who have a different point of view that I've tried to think as deeply as I can about the issues that arise from voting for or against the legislation. I want to make it clear to those groups that I've put deep thought into the way in which I'm going to exercise my vote.

I am aware that there are some amendments to this legislation. I've been fortunate enough to speak with Senator Deb O'Neill, who has done a lot of work on this issue and has been involved from the start with discussions about it. I understand that she is proposing three amendments.

I'm not sure if Senator Steele-John is referring to those amendments. I understand they may get some support from our colleagues in the Greens, which would be a very good thing. They are in regard to issues which I think the government, and more particularly the minister, should have taken into account before bringing this bill to the parliament. One of the issues relates to the importance of civil liability in respect of these cases. It seems remarkable to me that, where questions are still up in the air about how successful these medical treatments might be, and about all of the medical issues associated with them, we find ourselves in a situation where the government is proposing to remove civil liability for the scientists who are conducting these treatments. I have to say, I do find it very remarkable that what is essentially a government bill—I appreciate it's a conscience vote, but it is a government bill—is coming before us and we find ourselves in a situation where the government is proposing that scientists in this area have no—I appreciate we've reached the time and I ask that I be in continuance.

Debate interrupted.

Andrew McLachlan (SA, Liberal Party) Share this | Link to this | Hansard source

I shall now proceed to senators' statements.