Tuesday, 30 November 2021
Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021; Second Reading
'Mitochondrial disease' refers to a complex group of inherited conditions that can significantly lower an individual's health and life expectancy and that may be fatal. Mitochondrial disease is caused by mutations in the mitochondrial DNA or nuclear DNA of an individual, which can impact the ability of that individual's mitochondria to function properly. The disease varies in presentation and severity, but common symptoms include developmental delays, seizures, weakness and fatigue, muscle pain, vision and hearing loss, multiple organ failure and heart problems, leading to morbidity and, in severe cases, premature death.
The Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 aims to enable procedures intended to prevent the inheritance of mutated mitochondrial DNA, which is inherited exclusively through the mother. Mitochondrial disease is an umbrella term including a wide range of illnesses, with the severity of the disease dependent on how much of the DNA contains the mutation. The risk of developing serious illness due to mitochondrial disease is considered to be between one in 5,000 and one in 10,000. However, it is estimated that around one in 200 Australians is predisposed to mitochondrial disease, and approximately 56 children are born each year with a severe form of the disease. There are no typical symptoms, and, historically, diagnosing mitochondrial diseases has been challenging. Critically, a mother can carry mitochondrial disease unknowingly. There is no cure for mitochondrial disease, just the treatment of symptoms. In its most severe form, the disease can be debilitating, and children can die early in life.
This bill contains provisions that only women with a high level of mutations would be eligible to use mitochondrial donation, which this bill proposes to enable, in an effort to stop the mother from passing on the mutated genes to her offspring. This technique will not remove mitochondrial disease from the community. Children with mitochondrial disease would still be born. Mitochondrial donation will not impact asymptomatic female carriers, because they wouldn't realise they're at risk. Nuclear DNA mutations, which make up approximately 50 per cent of mitochondrial disease, are caused by this. This is not impacted by this legislation, nor would it impact on new mutations in the child born.
Research for treatments needs to remain the focus. In the view of many, the bill before us today is ill advised and certainly premature. It would allow deliberate heritable human germline gene manipulation and transfer. The risks for children born using these techniques are not yet fully understood, and the available scientific evidence to support this procedure is limited. The United Nations Convention on the Rights of the Child exhorts signatories, including Australia, to act on the principle that a child, by reason of its physical and mental immaturity, needs special safeguards and care, including appropriate legal protection before as well as after birth. While, of course, no child ever consents to being born, and all the joy and agony that that can come with, the implementation of this bill would burden future generations with unpredictable impacts on human gene pool integrity and pass without Australians being informed or giving consent to these changes.
It ignores experts who say clinical use of mitochondrial DNA transfer is too risky to yet be allowed in humans. While it would enable mitochondrial DNA disease afflicted parents to have children genetically related to them, the children would also be related to a third party. There would be three genetic parents for such a child. This procedure is a high-risk experiment instead of safer methods for such parents to have mitochondrial DNA disease-free children, though admittedly not ones related to both parents. Moving down this path would also create a climate of acceptance for other uses of the techniques—potentially, gender selection, genetic enhancement or to renovate older human eggs that are unfit for purpose. Such procedures should also remain not permitted. I encourage all members of parliament and those interested in these areas to watch the 1997 movie Gattaca. It is an accessible and thought-provoking way to understand and consider some of these issues. It will certainly make one pause. This bill will also enable a process that requires the creation of an embryo solely for the intended purpose of destroying it.
In 2019-20, the National Health and Medical Research Council undertook a series of community consultative activities on this matter. There was also a Senate inquiry. Through those consultative processes, there was significant community support for legalising mitochondrial donation for use in Australia. However, these consultations also identified that the majority also recommended that a cautious and nationally regulated approach with appropriate safeguards and ongoing monitoring would be essential. A number of ethical issues associated with mitochondrial donation have also been identified, with some members of the community concerned that the technology would result in three-parent children or a form of genetic modification. Concerns regarding the rights of the child, privacy of parents and children and ensuring informed consent and donor rights and responsibilities were also identified. Ultimately, there were many unknowns, given the relative newness of the science, including in relation to the safety and efficacy of the techniques as well as the potential for unintended consequences in the longer term that would benefit from further research.
Protecting the human rights of any child who may be born using the new experimental mitochondrial DNA techniques should be prioritised, especially to meet our responsibilities under the Convention on the Rights of the Child. As it stands, it appears a child born in the clinical experiments and any descendants would have no rights to redress or compensation for adverse health or other impacts resulting from the use of the high-risk, novel techniques and procedures that this bill proposes to license.
The bill greatly reduces the genetically engineered mitochondrial DNA child's rights when it grants immunity from civil liability or accountability to Commonwealth government officials, government appointees or other categories of protected person for a broad range of protected actions. So, should a child's right have priority over the aspirations of its parents with mitochondrial DNA disease to try for their own genetically related child through this clinical process? The child, created using its mother's nuclear DNA, would still have a high risk of suffering the same debilitating mitochondrial disease as she does. Such prospective parents already have several well-established, much safer, lower-risk options available to create a mitochondrial-DNA-disease-free family without it needlessly and unacceptably infringing the rights of the child or their descendants.
The law already permits IVF, screening of donated sperm and egg, adoption and fostering, which more assuredly protect the rights of a child to good health and freedom from its parents' disease. In the United States, mitochondrial donation is banned due to the impact it may have on germline, and it needs more research. The view there is that it is currently too unsafe for use in humans. While in the UK such procedures have been permitted since 2017, there is no confirmed live birth using this method and it is not permitted in any other country. This is all with good reason.
I understand that, as a father of two so far seemingly healthy children, this is all relatively easy for me to say. My heart swells for the parents who, knowing their biological children would also have this debilitating disease, are confronted with such very difficult choices. In no way do I dismiss their passionate, good-faith advocacy and I have nothing but compassion for their situation. It may still be that further research allows us to revisit this issue in the future with more very necessary information. There must be more conclusive research data on the safety, efficacy, equity and ethics of this gene manipulation before I am able to vote for this in good conscience. It's simply too risky. One should not be playing God. I cannot support the bill.