Chris Hayes (Fowler, Australian Labor Party) Share this | Link to this | Hansard source

I would like to respectfully make a contribution to the debate on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. From the outset, I'd like to say I'm not trying to approach this from any moral or religious perspective. I believe that, as legislators, we must consider the perceived benefits and risks associated with the proposed methods of mitochondrial donation. But we must also consider and weigh them against our obligations in terms of ethical perspective.

There is no doubt that, for some Australians, the risk of passing on mitochondrial disease is far too high. It can prevent women from having healthy children. Understandably, women facing this prospect would look at any feasible approaches to lessen that risk. As with any pregnancy, I think it would be every parent's fervent hope and prayer that they would have a healthy child. Regrettably, at the moment, almost one child a week—somewhere between 50 and 60 children each year—is born with a mitochondrial disease in this country. Sadly, the prognosis for those children is not great. The fact is that most will die within the first five years of life. On those young people: I know I will be followed by the member for Macarthur, Dr Freelander, who has on a number of occasions treated young patients suffering from a mitochondrial disease, which he will inform the House about.

Others living with this disease will have a lower life expectancy and can suffer a wide range of debilitating symptoms, including loss of hearing and vision, multiple organ failure and heart problems. Clearly, this is something that should concern all of us. I agree with so many in this place that there must be an ethical and sustainable way of mitigating these risks, and that there is a need for a pathway for women living with mitochondrial disease to have children without the fear of passing on this debilitating disease. As legislators, we must balance what are seen as the possible benefits to humanity with the extent to which we are willing to compromise on our ethical obligations in passing a bill which will pave the way for these proposed research methods.

Firstly, the bill sets out a path for research into mitochondrial donation technology as a means of assisted reproduction technology. Secondly, the bill creates a pathway for mitochondrial donation to be legalised for clinical use. As the bill before the House stems from legislation in the United Kingdom, it is prudent to note that in that jurisdiction only two methods have been approved for research and subsequently for clinical use. The first of these techniques is called the maternal spindle transfer, which involves the extraction of a mother's nuclear DNA to be transferred into an unfertilised donor egg containing healthy mitochondrial DNA. This technique, despite objections from some, is one I can conceptually support, as it seems to follow a pathway for women suffering from mitochondrial disease to have a child without the needless destruction of human embryos, and only sees the discarding of an unfertilised egg. Whilst MST will, to some extent, still have an effect on the genetic code, as it does require a third person as the donor, I consider this approach to be more in line with modern-day IVF, which is a proven assisted technology—one which I would find very difficult to oppose, given that the other day I found a statistic which surprised me: one in 20 babies are born in Australia today through IVF technology.

This bill also paves the way for research into four other techniques, three of which have not been approved in any other country or jurisdiction for licensed research. Today I want to focus on the pronuclear transfer, the second and more favoured approach in the United Kingdom and, as I understand it, here in Australia. This technique is vastly different from the maternal spindle transfer, as it requires the fertilisation of both the mother's egg, which has the mitochondrial disability, and the egg of a donor. It requires both those eggs to be fertilised. Once the mother's nucleus has been transferred into the donor's egg, which is at that stage an embryo, the mother's embryo that has the diseased mitochondrial DNA is then discarded. That is the part that I find problematic, as it requires the creation of two human embryos, with the full intention that one of these embryos will be destroyed at the end of the process.

The Plunkett Centre for Ethics raised a concern about this, and it is quoted in the committee's report, saying:

Treating an embryo merely as a means and not also as an end in itself violates the respect owed to embryonic human life.

That is a view I actually share. To create a human embryo and then destroy it for the sole purpose of research is something that I just can't see as being ethical. To be fair, the report goes on to note that there are many other research techniques and procedures that involve the destruction of embryos. But, in my opinion, that in itself does not justify the creation and destruction of potential, viable human embryos as being a normal or necessary process of medical research. I do not believe it is proper or ethical to create and then destroy human life, albeit embryonic human life, even if it is the intention for alleviating, ultimately, the suffering of another. While I have less concern about material spindle transfer—and, in fact, would support research being undertaken in respect of that technique—I cannot, from an ethical point of view, support the approval of research into the practice of pronuclear transfer.

Should this bill be passed, I think there will also be an issue that could occur with respect to the limited supply of donor eggs. The type of technique proposed by pronuclear transfer requires a donation of both eggs from the mutated mitochondrial DNA as well as healthy eggs. My concern is that, where the access to supply of either of these eggs is limited, it could well result in a commercial incentive being offered to women and, inadvertently, the creation of unwarranted social consequences. In this scenario, I think we could be creating a market where women who are willing to give up their eggs at a cost would, realistically, be women from—how do I say this?—probably more socio-economically challenged backgrounds. I know that is not the intended outcome of the bill before us, but I suggest it could be a realistic one. I'm sure that it wasn't the intention of those who approved organ donations to create a trade in organs—and we know that that does occur. We know that occurs in China, the Philippines, Thailand and many other countries, and I know that a lot of that is illegal trade. So it is not inconceivable that egg donation would not follow a similar path.

Further to this, the donation of feasible eggs is not a simple act. It's not like blood donation. It will require the donor to go through a hormone regime in order to donate the viable egg which is to be fertilised—and in the full knowledge that it is there to be destroyed. Other than supporting family, I do not imagine there will be an outpouring of women in the community ready to go through this type of treatment as simply an altruistic gesture.

Debate interrupted.