Janet Rice (Victoria, Australian Greens) Share this | Hansard source

As the speakers before me have noted, this is an incredibly complex issue. I felt I had to rise and speak to this proposed legislation today, the Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021, despite the fact that the issue of mitochondrial disease is not one that I have followed closely as many of my colleagues have. I have not met with families who have suffered from mitochondrial disease. I have not personally heard their anguish. But it's clearly a very important piece of legislation addressing some really complex issues. There have been so many concerns about mitochondrial donation that have been raised through various inquiries and stakeholder consultation activities.

On the one hand, we have families that are suffering the anguish, the trauma, the huge grief of having children born with mitochondrial disease who die, usually before they are five years old. We have the anguish of potential parents who don't know whether they want to go ahead with pregnancies because of potentially bearing a child that is going to suffer with mitochondrial disease. To be able to do something for these families is something that, yes, you would think this parliament should do. On the other hand, there are issues that have been raised about the risks, the rights of the child, future adults and future generations, issues with the creation and destruction of embryos, the creation of embryos from more than two people, the limited supply of donated eggs, donor rights and responsibilities, the fact that trial participants potentially were able to undertake sex selection following pre-treatment counselling, and the unintended or unknown consequences of manipulating or altering genetic material, which may lead to genetic engineering.

As I said, there have now been numerous inquiries looking at all of these issues in all of their complexity. In particular, the most recent one, the Community Affairs Legislation Committee inquiry into this bill, noted that this is a matter of conscience. As that report said, it:

… engages difficult ethical, social and scientific issues. The committee notes that the changes proposed are significant and that the bill would amend existing laws that strictly control embryo research and prohibit cloning.

I want to really thank everyone who has engaged in the consideration of these issues. I want to thank the advocates for this bill who have been engaged in this space for a long time and who understand that nuance and complexity and have advocated for an approach that respects human life and fully recognises the powerful complexity of the processes that are involved. I particularly want to thank and recognise the families who live with mitochondrial disease and the Mito Foundation, who have been working on their behalf.

I also want to thank those who are taking a position not in support of this bill, because I think it's very important that they have been able to bring their concerns forward for us to consider. In particular, I want to thank Bob Phelps from Gene Ethics, who has been lobbying very hard against this bill and who has made me think long and hard and read a lot more about this issue and about this bill than I thought I was going to when we first started considering the issue. I think it's important that all of these issues are thoroughly canvassed and considered by all of us so we all grapple with these issues and all come to a decision, on balance, as to where we stand. Particularly, I thank Bob. I've worked with Bob for a long time on the issue of genetically modified organisms and I have a lot of respect for his passion for public policy that properly considers the risks of genetic modification, particularly, in this instance, of human genetic modification. I've been grappling, as all of us have, with working out where I stand on this. Where I have come to is that, on balance, the benefits of this bill outweigh the risks. Having heard and deliberated over evidence from multiple advocates on multiple occasions, I believe this legislation will provide meaningful and welcome change for people who suffer from mitochondrial disease. I believe the checks and balances in this legislation will significantly ameliorate the risks associated with these new techniques.

I recognise that this is not a straightforward, simple step to take. It involves changing legislation, and it's important to have really strong protections in place. I remain concerned about the lack of data from the UK trials. I think it would be a much easier position for us to take if we had data from those UK trials and if there were published literature saying, 'This is what the results of the trials have been.' I'm going to support this legislation. On balance, I think it is good legislation. It is going to have a lot of benefits for people who are suffering from mitochondrial disease. But I foreshadow that I have quite a bit of sympathy for the further amendments being proposed in this place that add some extra checks and balances to make sure we have a really good understanding of the science and, as the clinical trial goes on through the years, of how to make sure that we know that these are appropriate techniques and processes to carry on into the future.

In conclusion, I thank those from across this parliament who have approached this complex debate constructively, and I look forward to hearing the debate during the committee stage about further amendments that could improve this legislation. On balance, however, I feel it is important legislation that should be passed.