At the start of my contribution to this debate on the Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021 I recognise that the desire to create a human life is perhaps the most fundamental human desire. There is something inbuilt, seemingly, in human beings that makes them want to have a child of their own to pass their legacy beyond their time in this world. I can deeply understand the desire of those in our community who are afflicted by mitochondrial disease to successfully have a child and raise it as their own. I am in the fortunate situation of having five children of my own with my wife. They are the greatest joy in my life, even though I sometimes joke that the only reason I had children was so I could have grandchildren. Again, the desire to pass on that genetic material is something I seemingly have.
Those who are afflicted by mitochondrial disease in a severe fashion have a difficult choice to make about whether to have children because it is a disease that can be passed on genetically. I can’t understand the angst that those people must go through because I do not have children or loved ones who are afflicted by this disease. I pay respects to those committed individuals who have for a long time advocated for these changes. I have seen some of the experiences that those families have been through and I acknowledge their great desire to see a solution to this terrible disease that they have been burdened with.
While I respect those efforts, I cannot support this bill for two main ethical considerations I have with its approach. The first of those is the inclusion in this bill of techniques that would seek to remove defective mitochondria in a way that, in my view, necessarily destroys life. I don’t think we should ever seek to use a human life as an instrument or a tool to help someone else’s life. I believe in the dignity and sanctity of each individual human life and that we should, to the extent that it is possible, strive and aim to protect each individual, sacred human life.
However, this bill would approve two techniques that would result in the creation of zygotes, or embryos, with the purpose of using one of those zygotes—or, in my view, one of those lives—to help the other that has defective mitochondria, which would result in the necessary destruction of the mitochondrial donor life. The two techniques in this bill are the pronuclear transfer technique and the second polar body transfer technique. They are apparently, according to Dr Megan Best, similar to methods that are used in cloning. Because they result in the destruction of a life, I simply cannot support an approach that goes down this path.
I recognise there is a dispute about when a life begins. It seems to me that once conception occurs there is a continuum from that conception that involves the evolution of a human being. There is really no other distinct point that ethicists have identified which switches a zygote through to an embryo or to a later stage. There’s no discontinuity there. There have been some artificial boundaries defined by human beings but there’s nothing we can actually identify. I don’t see ‘at that point it’s a zygote, at that point it’s an embryo’ myself.
The second ethical issue and concern I have with this bill—and it has been raised with others—is around removing the prohibition on transferring genetic material between two human beings. This would result in permanent changes to the human germline. There are a lot of things we do not know about these techniques and the ramifications of them. There can be, as we know from animal trials, mistakes and so-called off-target errors made in genetic modification. I do not think we are at a stage where we should overturn this prohibition, with so much still unknown about these techniques.
I am also concerned about the broader ethical considerations of using the same techniques approved in this bill to tackle other diseases or afflictions, or even, ultimately, to look at more heritable traits around attributes of height, strength and other things. I know this bill does not do that, but it is hard to separate here the development of these techniques from the ethical considerations of those broader applications that might occur once the techniques have been established.
Because of those ethical considerations, I can’t support the bill as a whole. However, I would like to flag that I and others in this chamber will be moving amendments to tackle some of the ethical considerations I have. In particular, there is a specific amendment I propose to move that would remove the pronuclear transfer and second polar body transfer techniques—the ones that involve the destruction of a fertilised egg—from the bill and, therefore, deal with that ethical consideration I have. That amendment would still leave the maternal spindle transfer technique and the first polar body transfer technique as ways with which to make the mitochondrial donation that do not result in the creation of two fertilised eggs. In that case the donation would occur at the egg stage, before conception. That would therefore absolve that first ethical consideration I have.
I had another ethical consideration with the bill as it was originally drafted and proposed in the House. At that stage the bill provided for the approval to destroy any female embryos that were created from the mitochondrial donation methods. The rationale for that was that almost all mitochondria are acquired from the mother, so an added protection was originally there to allow parents going through this process to destroy the female embryos and therefore reduce any residual risk of mitochondria being transferred to their children. I thank the government for considering amendments that were previously drafted, and I also acknowledge the efforts of Mr Kevin Andrews in pushing those in the House. The bill has already been amended in the House to remove that, and I think it’s sensible that we should not allow a form of sex selection to be approved or legalised in this country.
The other amendments I will seek to move don’t completely ameliorate the ethical concerns I have but would, I think, go some way to providing greater oversight by parliament and other bodies on the development of these techniques if that is approved by this parliament. Originally, the bill only required a review after seven years. I again acknowledge the efforts of Mr Kevin Andrews, whose amendments have now inserted annual reporting into the bill. However, I flag that I would like to move further amendments that would require more detail in that annual reporting, including detail on the number of participants and any births that have occurred, in a de-identified and private way.
The amendments I will move also seek to remove the so-called stage 2 of this bill. This bill establishes a number of licences that are, if you like, ready to go—licences that involve further research and trials of mitochondrial donation. My amendments would not affect the three licences. However, two further licences are in the so-called stage 2 process, which would result in the clinical practical application and provision of mitochondrial donation services to the broader community. At this stage, as the bill outlines, there’s no regulatory framework to govern the stage 2 licences, the clinical practice licences, because there’s just too much we do not know at this stage about how that framework could work once the trials and research are concluded. I do not see a strong rationale for us to give preapproval, if you like, to these licences. This bill would allow the Minister for Health and Aged Care in the future to provide a regulatory framework for these licences through mere regulation rather than parliamentary legislation.
There has been a broader debate over the past couple of years in this house about the appropriateness of delegating legislation to ministers. I recognise the work of Senators Carr and Fierravanti-Wells, through the Senate Standing Committee for the Scrutiny of Delegated Legislation, in highlighting the concern that there’s too much legislation that is providing authority to ministers to effectively make laws through regulation, with more limited parliamentary oversight. Of course, some of these regulations can be disallowed in the future, but we all know that process is a much more limited one than the passage of legislation through committees and through the scrutiny of the two chambers.
By removing stage 2 of the bill, what I propose is that, following the conclusion of research and trials, the government of the day, or any senator or member, would need to bring through additional legislation to provide a regulatory framework for the clinical practice elements of this bill. To me, it seems that that enhances our role and our job as senators, and the role of members in the other place, to provide proper parliamentary oversight over these novel and revolutionary techniques. Almost all contributors to this debate, both for and against, have recognised the uncertainties and unknowns associated with some of these technologies. To me, it seems absolutely appropriate that we walk down this path one step at a time and that we do not seek to jump over a level of parliamentary scrutiny and oversight here. So I’ll be moving that amendment as well.
I’ll just quickly flag a few other amendments that I know some colleagues of mine will be moving; I will perhaps leave it to them to explain in more detail. I think this bill errs in exempting the Office of the Gene Technology Regulator from having oversight of these processes. Again, in a similar vein, these are novel and revolutionary approaches. We have a regulator established to deal with a lot of these issues, especially in regard to animal and plant life. It seems strange that the OGTR would be removed from the process here and that instead this bill would establish that the NHMRC Embryo Research Licensing Committee is the responsible body. I think we should be using the existing expertise in this area through the OGTR.
I will also flag that, should my stage 2 amendments fail and should stage 2 remain in the bill, I’ll move amendments that seek to prescribe at least a minimum number of trial participants to go through the first stage before a stage 2 could be regulated by the minister. Finally, I don’t see a strong rationale to exempt those providing these procedures from civil liability through these processes. That has not been explained to me in sufficient fashion.
Overall I think this bill is an understandable reaction to a disease that is debilitating for many people. But we as senators, I hope, cannot allow that emotion to absolve us of the need to provide proper scrutiny of these techniques, which can have much, much broader ramifications for human development, the ethical treatment of life and the protection of what is the most sacred, fundamental human desire: to create another life and to protect, support and nurture that life.
