Deborah O'Neill (NSW, Australian Labor Party) Share this | Hansard source

I rise to make a contribution to what I'd have to say is a profoundly respectful debate about a complex matter. I want to commend all of those participants whose words I've heard already this evening.

The Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 is 'Maeve's law'. It arises out of the experience of the frailty of the human condition in a particular person, young Maeve, around whom this bill really is centred. If it's passed, this would be a landmark piece of legislation with very long-lasting consequences for health care in Australia. But I don't believe that it would enhance those health outcomes. In fact, as it's constructed, and at this point of time, it raises serious and profound questions about ethical issues of great importance, such as cloning, the sex selection of infants, children having three parents and germline tampering.

I am a Labor senator brought up in the Catholic faith, and, with all the sinners alongside me in that church, I still take my moral guidance very significantly from a belief in the fundamental dignity of human life. My party, the Labor Party, seek to effectively govern and effectively participate in the parliament by binding on how we vote. There are very few occasions on which a conscience vote is enabled, but this is one of those pieces of legislation to which a conscience vote has been allocated. I acknowledge that it's not just through the language of faith that people come to a moral and ethical disposition, but the language of my faith and the teachings of my faith have significantly informed my views about the sanctity of life.

I want to acknowledge one of my colleagues in the other place, Dr Mike Freelander, who has served the people of the Macarthur region for decades as a paediatric specialist before he came here. I know that he continues to serve in that public hospital at no charge, providing his service to the community. He's a man of great integrity—I'm very proud to serve alongside him—and he is supporting this piece of legislation. He has also been in a position where he has looked after children with mitochondrial disease, and I acknowledge his expertise. We hold very different views about what the action of this parliament should be with regard to this bill, but the conversations have always been very informative and very respectful. Again, that has characterised the debate to date.

Before I put out in a more linear form the rationale for my view, I want to acknowledge the advocacy of young Maeve Hood and her family. It's never easy to step into the hurricane that is national politics and attempt the long and slow process of political reform, but the Hood family have actually undertaken that with considerable grace and candour. Many families turn their grief and loss into profound activism. Maeve and her beautiful family, and other families like theirs, are in my prayers. I pray for their health and wellbeing.

I do know the suffering and grief of losing someone so young. It was not one of my own children. I am happily a mother to three now grown adults. But I can still remember just before my niece, Lucy O'Neill, was to turn four, having her on my hip at her pre-fourth birthday while she blew out her candles. She didn't quite make four. She died of liver cancer. I know families, so many of them, that have had young children die of brain cancer. That suffering is best translated into a positive effort, and that is what Maeve's parents have attempted to do here.

But we are legislators and we need to think about what this bill will do and establish and the broadest good and the least harm that we can manage. This bill as it's currently constructed would legalise processes in Australia that currently carry large custodial sentences or fines. We are seeking to overturn law that if you acted against right now you would go to jail. The law is preventing the creation, for the purposes of reproduction, a human embryo that contains genetic material of more than two people or contains heritable changes to the genome. My fellow senators, we shouldn't have to change legislation to do ethical science. The process that we're considering here in this legislation is only legal in one other country in the entire world, and that is the United Kingdom. We are not even sure that the five years of research that have been undertaken with the carve-out that they created in their law has actually come up with anything at all that's approaching a success.

I have here beside me the report of the Senate Community Affairs Legislation Committee that I served on that investigated this piece of legislation. We sought to inform ourselves about what's really going on. The committee made one recommendation, which was to make no recommendation as this is a conscience matter. The report simply summarised the submissions and views available at the time of reporting. We couldn't report any factual data or evidence despite five years in the UK of the program that is before us for consideration tonight, here in Australia. It's been going in the UK for five years and there is no data. There is no evidence. We can't see if there's been any progress at all because the way in which that legislation passed did not allow sufficient scrutiny.

If time allows this evening, I will move the amendments that I have already advanced and that I think are available to senators. They were alluded to in comments by Senator Canavan. I've been speaking with colleagues throughout the day about my concerns and why we need to make amendments to what is before us. Even if the bill should pass, it should pass in a different form.

I do not believe that Australia should become a society where people can have designer babies. That will not be the intention of those who seek to advance this legislation, but it could well and truly be the intention of somebody entrepreneurial—and I say that in the worst possible way—who sees the opportunity to make money for themselves at a cost to others that is beyond possible consideration. We shouldn't be thinking about enabling the construction of designer babies made to specifications where people tinker with an embryo to pursue a perfect child. I'm deeply troubled by the production of genetic material, the building blocks of life, to be casually discarded as by-products of a process.

Another relatively unknown implication of this legislation is that children born of this process will have three—not two but three—genetic parents: a father, a mother and the donor of the mitochondria. It's a very significant change and it's a new frontier for society. We need to acknowledge the novelty of this social change and the effects on any child growing up with this knowledge. We need to acknowledge the profound issues that this bill raises in terms of the moral, social, scientific, ethical and practical realities that it will enable.

The techniques that are under consideration will have long-term, irreversible and unknown consequences for the germ line of those born following the treatment. That means that that child and all its descendants will carry unknown consequences to their children and their children's children. This will not end with one generation. It goes on and on, and we have not seen that before on this planet. Children of MRT are the first in human history to be genetically modified from the moment of their origin. Surely one day they will ask, 'Who am I?' in the most fundamental way that we ask ourselves as human beings: 'Who do I belong to? Who am I really like? Where does this bit of me come from? Who are my parents?' Perhaps a register of the donor will hold that information without error, in perpetuity, or perhaps it will be like everything else in our society—a little bit broken, at least. And where's the security? That's just for the holding of information, let alone the understanding of the deepness of our need to explore our identity.

Some senators will argue that this proposed path we're debating is the only way to address the very real impact that mitochondrial disease and the deaths of much-loved young Australians have on the people who know and love those young Australians. But what's being proposed in this bill is not really a solution to eliminating mitochondrial disease; it is an attempt to create a new way of interacting with the disease.

I want to point out that, as Senator Canavan eloquently described at the beginning, the gift of actually being able to have children is something we all deeply understand, and people make choices for and against that. But it does concern me that there are options that are available to these mothers who want to have children without the mitochondrial consideration. There's the capacity to undertake IVF with a donor egg—even perhaps from a sibling, to get that genetic connection. There is the capacity to adopt. Both of those models are legal, exist within the law and don't ask us to change what we have currently outlawed.

If this bill is enacted, it is going to receive the benefit of 10 million of Australia's hard-earned taxpayer dollars, and the time and energy that it will draw will take people away from what I consider to be other, very pressing medical research that will have a much broader impact across the community. And that is our task as parliamentarians: to weigh up the relative merit, benefit and risk. There is merit and there is benefit, but there is extraordinary risk embedded in what we are considering here today. How many will this bill affect, compared to the advances that could be made in treating current diseases such as brain cancer in children or liver cancer in children under five?

What's proposed here isn't a cure; it's a radical technology trial to enable a choice for those who would prefer their children to be genetically related to them but not carry the genetic disorder. I believe that the legislation on the experimental mitochondrial donation treatment is simply not worth the scale of the risk that is embedded in what is being put before us. Perhaps if we had more data from the UK that could underpin a solid assumption about the capacity of this initiative to work, I might be more inclined to give it some support, but that is not the case. We're literally flying blind here. This proposed treatment shatters decades of long consensus around experiments regarding human cloning and germline editing. We will, if this bill passes, create a new frontier in the use of cloning and gene editing.

I indicate that I will have further comments to make when we get a little further along in this process, and there are three amendments that I've put before the Senate for consideration. The first goes to the need for the creation of evidence and data that can be observed, and that there is an experimental threshold where we should have at least 20 occasions on which this technology has been successful. The second goes to, before we advance, civil liability protections, and the third goes to the Gene Technology Act. I look forward to continuing the debate in the coming day.