Speeches Chris has made in the Australian Federal Parliament.

Bills - Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021 - Second Reading

November 29, 2021

Mr HAYES (Fowler—Chief Opposition Whip) (16:19): 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 assistive 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 mutated 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.

Given that this bill is modelled on the legislation introduced in the United Kingdom, it's worth looking at what progress has been made in the six years it has been in operation. As I understand, only one clinic in the UK has been authorised to conduct research into mitochondrial donation technology, and 21 couples have received treatment. However, I am advised that, due to privacy reasons, we cannot be provided with any information as to the outcomes of these cases. I find that absolutely extraordinary, given that we have been invited to pass legislation based on the UK model itself. I don't expect the names, the ages or the locations of people, but information as to how many viable pregnancies and births have resulted from mitochondrial donation or how many embryos have had to be destroyed to achieve the favoured result would be understandably useful information in considering arguments on advancing these technologies. But there is none.

The only reports of successful births as a result of mitochondrial donation procedure have come out of Mexico and, of all places, the Ukraine. Neither of these countries has explicitly legalised the procedure. There are no reports in the Lancet, and, as I understand it, they are not considered as legitimate examples by any international medical research authority. I note the United States has prohibited clinical trials into mitochondrial donation on the grounds that it constitutes germline editing and, as such, presents an unacceptable risk. Similarly, the World Health Organization has indicated its opposition to making modifications to the genetic code in humans capable of being passed on to future generations. Therefore, we have no compelling information as to the types of methods that have been used in these British cases, and little or nothing about the success or otherwise, as to the methods being an assistive reproductive technology. Particularly when the procedures necessitate the destruction of embryos, simply lining up to pass legislation without sufficient evidence or any real idea as to its effectiveness or its prospects of success is, I believe, just not good enough.

In 2006 this House debated whether therapeutic cloning through the use of human embryos should be permitted. I said at that stage that an embryo should be afforded the same respect from the moment of creation regardless of the method, intention or age. My position remains the same, unless it can be clearly shown that there are real and substantial benefits to humanity itself that may outweigh that ethical opposition. I'm not opposed to mitochondrial research or all the associated donation technologies. Clearly, we need to be working towards ways to mitigate the risk of children being born with mitochondrial diseases. I believe that maternal spindle transfer may be one of those ways, and I would be prepared to support legislation that allows this technique going forward. However, to support methods that would require at least one human embryo being destroyed at every try, successful or not, is a bridge too far for me.

I understand my position is going to disappoint some people. But, ethically, I cannot support clinical research or practices involving these human embryo technologies. I will exercise my conscience vote to vote against the bill as it presently stands.