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.