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. Parenthood is a gift. It's the most precious gift, having a child with the characteristics and personality quirks of yourself and your partner, and when a couple is unable to have a healthy baby, we must, as a community, do all we can to assist. Under Medicare we provide access to IVF technologies, we have allowed surrogate arrangements, and once a child is born we do all we can to make sure that that child can have the very best medical care and start to their life.
The quality of a life lived does not determine the value that is inherent in it. All life, at all stages, has inherent dignity, value and worth, and it is critical that, as we seek to debate these difficult issues that cut to the heart of our morals and values, we keep that at the front of our minds at all times.
Mitochondrial disease is an insidious, incurable and often fatal condition that can be caused by over 250 different gene abnormalities. Women with mitochondrial disease can pass the disease to their children, and the mechanisms for doing so are multifaceted and complex. We know that the disease can be passed on through the mitochondrial DNA, but it can also be passed on through a woman's germline DNA.
We know that mitochondrial donation does not cure mitochondrial disease, and it's not effective for asymptomatic women who are mitochondrial disease carriers, or those with DNA mutations—which account for half of all mitochondrial disease cases—or for those instances where new genetic mutations occur spontaneously in the embryo. However, genetic manipulation through mitochondrial donation may allow some women with known mitochondrial disease to have a genetically related baby which may be free of mitochondrial disease.
But the gift of parenthood in such circumstances—or indeed in any circumstances—should not override the rights of the child. This is a complex genetic manipulation process, and all of the associated ethical concerns should be addressed through the use of a donor egg or existing egg and sperm screening techniques. But it's understandable that this would not address the natural desire of a couple to have a child that is genetically related to both parents. I can understand that.
I want to clarify that it's important for me, and I expect for us all, that we provide hope wherever it's possible, to relieve suffering and to improve human life. Yet, at times, we need to look at the research and the scientific and medical techniques and procedures, and decide whether it's a path that we should go down. These are not just personal medical decisions. These decisions have long-term consequences for families and for generations should there be any unintended or unforeseen consequences of the procedures. These decisions go to the heart of how we protect our common human genetic legacy. I'm not a scientist, and I've found it challenging to absorb all of the concepts and nuances of this scientific research. I'll support a number of amendments in order to ensure this bill gives the greatest protections to the most vulnerable in our society. I appreciate the member for Menzies and his conviction in bringing forward these amendments.
The banning of sex selection for embryos is the first amendment to this bill that I will vote in favour of. It is vital to the equality of our society that we do not seek to prioritise or favour children of one sex over another. I do worry that the ability of couples to select children on the basis of sex will see entrenchment of gender imbalance amongst us.
Secondly, I'll be supporting the amendments to ban post-fertilisation techniques such as PNT. I cannot support a process whereby a zygote is intentionally created but then is not given the opportunity for that life to continue and to flourish. The technique of choice in the UK takes a fertilised egg from the mother. The DNA is extracted and put into a fertilised egg from the donor and the father which has the DNA removed. This is the pronuclear transfer method. In this case, one embryo has been created which is not 'for the purpose of achieving a pregnancy in a particular woman', as is required by current legislation. To fertilise an egg and create the conditions for life only for the purpose of destruction is not something that sits comfortably with me.
Finally, I will support amendments to improve the reporting frameworks and time lines and to see an increase in clinical trials before moving ahead with these techniques. It is vital that, if this bill is to pass and the opportunities for mitochondrial donation begin to take place, the science and all the protections for those who will be taking part, including any potential children, are as robust and rigorous as possible.
I've researched the issue as extensively as I can and considered the correspondence I've received from various advocacy organisations. I've come to a conclusion based on the research and my own conscience. I thank all of those who have contacted me on this particular matter.
This bill reverses the longstanding prohibition on heritable human genetic manipulation. Mitochondrial donation allows changes to the heritable genetic information of a child and will affect that child, their children, their grandchildren, their great-grandchildren and the many generations to come. That's why it's important to make sure that the provisions of this bill are considered with the utmost care and diligence.
I want to thank my colleagues in this chamber who have taken the time to wrestle with these vexed issues. Though we may have arrived at different outcomes, all should be commended for the respectful way we've been able to engage in this complex and difficult debate. This displays the best of our democratic process.
While I do have some reservations around the implications of this bill, should the amendments brought forward that I will support be voted down, I will not take any action to prevent the passage of this bill. I'm actually confident this bill will pass, and I hope that those whom this bill seeks to assist find the comfort and help that it looks to bring. I hope that it's successful. I hope that we make technological advances so more parents can receive the gift of parenthood, which I have had the privilege to receive.