Raff Ciccone (Victoria, Australian Labor Party) Share this | Hansard source

I rise tonight to speak on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021, which is before the chamber. In July of last year the World Health Organization released a report detailing some of the ethical concerns raised by genetic interventions such as mitochondrial DNA donation. The report presented a number of important questions with regard to this new technology, questions such as: Who should have access to it? Who should make and enforce regulations for human gene editing? Indeed, should we be editing the genetic make-up of humans at all? These are some of the questions which were presented, and they're also questions with which we are presented here in the Senate today as we discuss and debate this bill in greater detail—the same questions that we are each seeking to find answers to.

There is no denying that these questions are, for most, deeply personal. The views of both advocates and opponents are often informed by their own lived experiences, some of them traumatic, and by their values and their faith. Let me, at the outset, state that I respect all these views. Whilst my own personal decision as to how I vote on this issue may be different to what others might wish for, I hope that together we can all recognise the validity of other people's decisions and that which informs them.

There are, for the most part, two different techniques that can be employed to facilitate mitochondrial DNA donation: pronuclear transfer and maternal spindle transfer. The pronuclear transfer involves the creation of two embryos from which parts of each will be removed to then create a third, with the first two being disposed of. The maternal spindle transfer, on the other hand, uses a separate process which avoids the destruction of two embryos but also involves three genetic parents and the associated difficulties of a threefold shared linage. The instrumentalisation of the human embryo in this way, the use of a human embryo merely as part of a production process, is a proposition that we as a society must consider if we are comfortable with. It is the ethical challenge which is before us.

At this stage, we still don't know everything about mitochondrial donation. The science behind it is complex and makes it difficult to determine whether this technology is currently completely safe and effective. As with many other new medical technologies, the risks associated with mitochondrial donation are still unknown. Many scientists and clinicians suggest there are too many questions around mitochondrial donation that still need answering. Indeed, one might suggest that the divisive nature of this subject is proof enough that we may be pushing the boundaries of nature beyond a morally acceptable level, especially when the consequences are potentially so severe.

I share concerns about this technology and I hold concerns about what it does, what it might do and what it means for us as human beings to employ this technology in the way that this bill as currently drafted would propose we should do. While it's true that mitochondrial donation has the capacity to create inheritable changes in DNA that could have significant benefits in the prevention of a disability or a disease, we're also confronted with the many questions which I alluded to earlier. At what cost do we decide to forego legitimate ethical concerns? Surely it is incumbent upon us to acknowledge the unknown impact of some of these changes? There's the inability of future generations to provide consent to these changes and the implications of altering a person's genetic composition.

We do not know how much mitochondrial DNA is transferred from the mother's affected eggs during the process of mitochondrial donation. Studies have shown incidence of carryover of mitochondria from the woman with mitochondrial DNA disease into the reconstructed embryo, presenting a potentially new risk factor for mitochondrial DNA disease in the child. In fact, mitochondrial DNA carried over from the woman with the DNA disease may have a greater chance to replicate than donor mitochondrial DNA.

It is also unclear whether mitochondrial donation could result in significant changes to the development of the embryo in comparison to normal embryo development. Whether the nucleus transferred from the mother's egg must adapt to the donor's egg is still being investigated—specifically, whether this adaptation could compromise the reconstructed egg's development.

There is also debate as to whether compatibility between the nuclear and the mitochondrial DNA is important. Some studies have shown a mismatch could compromise metabolism and overall health, but, again, there is still very limited data available. With so many questions yet to be answered, how could we, in good conscience, approve of such an intervention?

In considering this bill, the Senate must also have regard to the interests and wellbeing of the people who will be born from mitochondrial donation. What consideration is given to the rights of the child? Those born as a result of the donation have no say in the procedure or the consequences that follow it. The experimental nature of mitochondrial donation is likely to necessitate continual follow-up over the child's life span. Whilst this is true of many medical interventions, is it fair to expect this of someone who's had no say in how they were brought into this world?

Information relating to the health and wellbeing of a person born from mitochondrial donation and of future generations is still required to better understand the science. However, this information cannot be gathered unless families also provide consent to follow up. Prospective parents have a choice. They have a choice in their pursuit of conceiving a child. They do so on behalf of someone who is yet to be born. One might argue that the child will simply be grateful to be born, but there is no way to know whether the child may feel conflicted as their personal beliefs and values develop over time. Will they feel comfortable knowing that their parents made a decision that has or could have severely compromised their existence? How will this impact the child's relationship with their parents?

The social implications of mitochondrial donation are also significant. Beyond their immediate family, would the child want to know or foster a relationship with the mitochondrial DNA donor? It is true that the contribution of DNA from the donor is very small. However, this does not detract from the fact that it took three parents to bring the said child into the world. The genetic relationship between an egg donor and a child born from mitochondrial donation is extremely complex. I don't think anyone in this place would argue against that. An egg donor's nuclear DNA would not be present in the child, as only mitochondrial DNA would remain in the implanted embryo. However, if one or both parties were to value the donated mitochondrial DNA differently, it could be cause for major distress.

Consideration must also be given to the status of the embryo. Some, such as I, firmly believe that life begins at conception, and the process of mitochondrial donation involves the use and destruction of human embryos, a morally significant component in the creation of new life. As the earliest stage of development in a human being's life, an embryo should be considered precious.

In Australia, we already have assisted reproductive technology in the form of IVF. The use of IVF with egg donation is an option which is already legal and allows parents to be able to have the opportunity to have a child without the risk of the child having mitochondrial disease. Mitochondrial donation is distinct from the traditional IVF, as it involves a third party in the production of an embryo. Using IVF to produce embryos that result in the birth of a child is one thing, but, if mitochondrial donation were to be approved in Australia, it would involve the creation of embryos with no intention of fostering life first. Instead, embryos would be used for a scientific purpose that involves experimentation on and destruction of a morally significant component of human life. This is already evidenced in the United Kingdom, where, despite the procedure having been legal for five years and the regulating authority having already approved pregnancy, there are yet to be any reported live births resulting from the mitochondrial donation technique.

Further, the Prohibition of Human Cloning for Reproduction Act 2002 and the Research Involving Human Embryos Act 2002 make it an offence to create for the purposes of reproduction a human embryo that contains the genetic material of more than two people. They also specify that it is an offence to create for the purposes of reproduction a human embryo that contains heritable changes to the genome. Mitochondrial donation involves both interventions. Legislators passed these laws to prohibit such interventions because the consensus back then was that they were inherently wrong. Legislation was passed under the premise that interventions of this nature cannot and should not be justified irrespective of the good intentions that may motivate such interventions. Performing one of these procedures would be a serious breach of these established ethical boundaries. We must question why these boundaries should no longer be respected.

I sympathise with prospective parents wanting to use mitochondrial donation to have a healthy child. Who doesn't want to have a healthy child? However, just because we can do something does not mean that we should, nor does it mean it is ethical. The reality of this decision is that there are no no-harm options. We must inevitably make a decision on where the harm will fall. Allowing mitochondrial donation through pronuclear transfer would involve creating human embryos with an intent to destroy them, turning them into a therapeutic product that degrades and strips them of inherent human dignity. We must question what precedent this process would establish.

We are at a crossroads with this decision here in the Senate. As the genetic manipulation of our own evolution has never precisely been possible, the power genetic molecular biology research and technology has bestowed upon us should not be taken lightly, as we have the capacity to shape the future of humanity from its earliest stages of development. Stepping down this path would permit us to take over our own genetic evolution. This is a reality that I struggle to feel comfortable with.