Tuesday, 30 November 2021
Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021; Second Reading
I rise to speak on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. Genetic illness is an issue that's always been close to my heart. Throughout my parliamentary career I have constantly sought to advocate the wellbeing of families and individuals that suffer with such diseases. My work with Rare Voices Australia, the national peak body advocating for Australians living with rare diseases, and my own experience with my own family have informed my views on these very important issues.
It's often thought that only those who have directly experienced it can understand the turmoil that accompanies the diagnosis of a rare disease or illness for both the individual diagnosed and their family. In addition to the physical degradation that is the hallmark of such diseases, many of which are terminal, the emotional distress which accompanies such diseases is immense. Genetic and mitochondrial diseases are often rare and, as such, often lack adequate research and support services, compounding the strain on those suffering from them. Mitochondrial and other genetic disease, and both its physical and emotional impacts, is something I do not wish upon anyone.
This law will allow so many families who wish to have biological children the opportunity to do so. I think about Bethany Hodge and her husband, James, who live in my electorate. They hope to have children, but Beth's sister suffers from a mitochondrial disease known as MERRF syndrome, which significantly impacts her quality of life. Beth has discovered she is a carrier of this mitochondrial disease. Seeing the way her sister has struggled with the disease, Beth and her husband, James, do not want to expose their children and future generations to the possibility of experiencing it. The passing of this bill would allow Beth and James to have their own biological children without the fear of passing on such a severe disease. Beth told me that the passing of Maeve's Law will completely change the future for her family. She said she can't put into words how desperately her family want the chance to have their own healthy child. There are thousands of families like Beth's and James's across the country, and it's my belief that we owe them all our due consideration of this bill.
Through my own family's history with Marfan syndrome, which resulted in the death of my younger brother and cousins, it's my belief that science offers us an opportunity to prevent suffering. I think that we should all seize that opportunity to have that developed. This world is defined by countless challenges which, every day, we struggle to resolve. For the domestic and global burdens of conflict, poverty and famine, and, indeed, the illnesses that are complex issues, solutions often remain outside our grasp. The suffering that accompanies mitochondrial disease is a hardship which we have the power to avert. Through careful research we have discovered a way to prevent suffering before it even begins, and I proudly rise in this chamber to advocate that we do just that.
The risk of developing serious illness due to mitochondrial disease is small, but it is immensely significant for those who ultimately experience it. Around one in 200 Australians are estimated to be predisposed to mitochondrial disease, and approximately 56 children are born each year with a severe form of the disease. Most of these children are expected to have a life of around only five years. There is no known cure for mitochondrial disease and the treatment options are mostly limited to management of symptoms.
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 have a biological child that does not inherit that risk. The bill before the House introduces safeguards to ensure that the techniques are safe, effective and properly regulated. It also protects the privacy of the persons who make use of mitochondrial donation techniques.
Under the bill, mitochondrial donation will be introduced in a staged and closely monitored way. In the first stage, mitochondrial donation will be legalised for certain research and training purposes, including the purpose of undertaking a clinical trial of the use of mitochondrial donation techniques as part of human assisted reproductive technology. The aim of this approach is to build an Australian evidence base in relation to the safety and efficacy of mitochondrial donation techniques and associated issues such as feasibility, service delivery and costed impacts prior to a decision being made on introducing the use of techniques more broadly into the clinical practice.
I think that this staged approach to the use of mitochondrial donation is supported by rare illness advocacy groups such as Rare Voices Australia, with whom I have consulted. I know the work that they do for people who have absolute hardship in dealing with their own issues. It's so important that people like those at Rare Voices Australia are heard and supported, and I think the government should do all they can to make sure that there is proper funding and support available to families dealing with rare illnesses.
The use of specified mitochondrial donation techniques under this first stage would be subject to very strict licensing conditions. Once the clinical trial has demonstrated success over several years and the results have been evaluated by the experts, there will be an option to move to the second stage of this staged implementation, which would allow for accredited assisted reproduction technology centres across Australia to offer mitochondrial donation in a clinical practice as part of assisted reproductive therapy. Before such techniques could be used in a particular state or territory, the state or territory would need to enact its own laws authorising the use of the technique. The state or territory would, in doing so, be able to further regulate the use of the technique as part of its regulation of assisted reproductive technologies in its jurisdiction.
I know there are some groups with concerns about this new technology, and I honestly believe that many of those concerns have been addressed in wide community consultation. I am very conscious, though, that the benefits of greatly reducing the impact of mitochondrial disease on children's families and future generations is fundamental to a small but significant number of families across the nation, and the benefits that we seek to see far outweigh the risks of introducing mitochondrial donation overall. I am proud to add my voice to support these families—families like my own and families that live in my electorate—and so that Bethany Hodge and her husband, James, can have their child and know that that child is going to have a wonderful life and an opportunity.
Despite there being people who have different views, let's just have a look at who this will impact. When we look at who it will impact, I think we as leaders of this nation have an obligation to support science, support the opportunity and particularly support those families who this directly impacts. With that, I wish this bill speedy passage.
I rise to speak on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. This bill will allow women whose children would otherwise be susceptible to life-threatening mitochondrial disease to avoid their children inheriting it. This is a disease that significantly reduces life expectancy and quality of life, and it's very difficult to diagnose. There are currently no known cures for mitochondrial disease, with treatment options generally aimed at managing symptoms. The risk of developing serious illness is around one in 5,000 to one in 10,000, but approximately one in 200 Australians may be predisposed to mitochondrial disease.
Mitochondrial donation is an assisted reproductive technology that, when combined with in-vitro fertilisation, or IVF, as it is so well known, has the potential to allow women whose mitochondria would predispose their potential children to this disease to have a healthy biological child. The process creates an embryo which includes nuclear DNA from the man and the woman seeking to have the child as well as mitochondrial DNA from a donor egg, minimising the risk of transmission.
This bill establishes a national regulatory framework which allows different types of mitochondrial donation techniques for clinical use under a clinical trial licence for human reproduction. One of these is maternal spindle transfer. This involves removing the maternal spindle of both the prospective mother's egg and the mitochondrial donor's egg prior to fertilisation. The maternal spindle which has been removed from the mother's egg is then placed into the mitochondrial donor egg, which is then fertilised to form a zygote and then an embryo. The egg cell of the prospective mother, which no longer contains any nuclear DNA, is discarded.
Another technique outlined in this bill is pronuclear transfer. While I acknowledge that the science involved is very complex, I do have some personal concerns with this method, arising from my own personal faith. Pronuclear transfer requires fertilisation of both the prospective mother's egg and the mitochondrial donor's egg, using the father's sperm to produce two zygotes. It's at this stage that the pronuclear transfer occurs. The two pronuclei are removed from the zygote produced from the egg cell of the prospective mother and placed into the zygote which is produced from the egg cell of the mitochondrial donor. Following this, the zygote which is produced from the egg cell of the prospective mother, and which no longer contains any nuclear DNA, is discarded.
My concerns with this technique relate specifically to the creation of a zygote with the specific intention that it will later be destroyed. Whilst I acknowledge that there are a range of views in this place, and indeed around the nation, as to when human life begins, I personally cannot support this method. While I acknowledge that there are different definitions of when human life begins—whether that be a medical definition, a religious definition of many different kinds, a legal definition or otherwise—for me and for others who hold religious beliefs, this view of when life begins is deeply rooted in our faith. I acknowledge that, although I hold a Christian faith, this is something that is very personal in terms of when one might believe that life begins.
It's something that I had to wrestle with when, some 13 years ago, I underwent IVF myself in order to have our first born son, Oscar, whom I absolutely adore and think the world of. But I remember the wrestle that I had to go through in this process, trying to hold both my faith and the very deep desire to have a healthy child, having experienced some very great challenges and complications prior to this. The only way that I could safely have my baby was to go through the IVF process, so that meant I had to weigh this whole decision up and think through carefully what this meant for me, given my own personal religious beliefs. Being able to arrive at a realisation that I personally could choose to perhaps restrict how my IVF procedure would go, such that I would just look at fertilising the number of eggs that we intended to use, was a very difficult decision, but it was one that I had to weigh up carefully and where I realised the deeply personal aspect of legislation and techniques like this. This is an area where there is no easy decision. You weigh up the consequences heavily and deeply, and they are very personal. Many—not all, of course—have a deeply held religious belief that life begins at conception. For me, it's because I believe that as humans we are made in the image of God and that is why human life is so sacred. As such, I foreshadow that I will support any appropriately worded amendments that may be moved in this House that would seek to remove the technique of pronuclear transfer from this bill.
I also raise some concerns regarding certain provisions in the bill that allow parents to request that only male embryos be implanted and that any female embryos be discarded for medical reasons. Under current Australian law, sex selection of embryos under assisted reproductive technologies is already permitted in cases of a serious genetic condition, and it is unclear why a licence holder could not simply rely on this existing provision and why this bill explicitly states that selection of male embryos over females is permitted. Should there be appropriately worded amendments made in this House that remove this sex selection provision from this bill, I would also support this in the House. This medical advancement allows that descendants of those born from mitochondrial donation will have two sets of genetic material. It's one of those issues which, again, I've had to weigh up very carefully. I acknowledge that I'm not a scientist. I acknowledge that these are matters that go way beyond what perhaps we as legislators—