Senate debates

Wednesday, 9 February 2022

Bills

Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021; Second Reading

10:49 am

Photo of Kristina KeneallyKristina Keneally (NSW, Australian Labor Party, Deputy Leader of the Opposition in the Senate) Share this | Hansard source

I rise to contribute to the debate on the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. As acknowledged by Senator Murray Watt, who represents Labor's shadow minister for health in this chamber, Labor members and senators have a conscience vote on this bill. In my public life I've participated in many conscience votes, and I appreciate that the Australian Labor Party, in its rules and processes, acknowledges that there are certain matters that engage significant moral, ethical and spiritual issues, and that the most appropriate way to deal with them is to recognise that members and senators ought to exercise their consciences and vote accordingly. Usually, these are matters of life and death, such as abortion and euthanasia, though the Labor Party has also extended conscience votes appropriately in the past to matters pertaining to the removing of discrimination or to the granting of equal rights to persons regardless of sexual orientation. Today's vote is one that deals with matters of life and death.

Before I get to the bill, I want to speak briefly about my approach to conscience votes in general. My view of conscience and its formation is shaped by my Catholic faith. An often misunderstood view in the public is that all Catholic Church positions and teachings are infallible—that is, without error—and are therefore required to be followed without question. That is not quite correct. There are some teachings that are infallible, but the vast majority are not. In fact, the church teaches that Catholics have a duty to follow their conscience above all else, and no Catholic can be compelled to act against their conscience. To fully form a conscience, Catholics are required to consider both faith and reason, to consider the human experience, to consider the evidence that exists in the fields of science and other relevant fields, and to consider church tradition and scripture. In some cases, this process of conscience formation has led me to vote in accordance with the positions of my church—for example, when I voted to oppose the use of embryos in stem cell research. In other circumstances, I voted in contradiction of what my church taught, such as when the Keneally government in New South Wales brought forward a conscience vote to grant same-sex couples adoption rights—a bill that I supported and that passed the parliament.

I was aided in the process of conscience formation on this bill by participating in the Senate Community Affairs References Committee inquiry in June 2018, chaired by Greens Senator Rachel Siewert, where I had firsthand experience and opportunity to examine the issues, the evidence and the experiences of people who would be impacted by this bill. This bill proposes to legalise a technique that would assist women with a genetic condition known as mitochondrial disease to conceive a healthy, genetically related baby. Mitochondrial disease is a term that covers hundreds of conditions. It can be mild, with few or no symptoms, or it can be severe enough to be life-threatening. It can occur spontaneously at conception or it can be passed on by mothers who have mutated mitochondrial DNA. Fathers, generally, cannot pass on mutated mitochondrial DNA to their children because all mitochondrial DNA comes from our mothers.

Currently, women with mitochondrial disease have some options if they want to have children. Some women use IVF and donor eggs to avoid passing on the disease. Others choose IVF with their own eggs but screen embryos before implantation to select those with the lowest risk of carrying the disease. Some may choose to adopt or foster children, and some may choose not to become a parent. But some women with the disease see mitochondrial donation as another option to create a healthy, genetically linked child. The desire to have a child that is genetically related is foundational and universal to the human condition. Sadly, there are people who are not able to fulfil that desire owing to genetic conditions, medical infertility or social infertility. While my own situation of stillbirth is not perfectly analogous to the matters this bill covers, I note that my second child, my daughter Caroline, died of a condition that runs in sibling groups—a genetic condition for which there is no known clear cause or cure. Her death was a warning to me that any of my future children would carry a high risk of death as well, which in turn prompted our family to change our hopes and dreams in response to the children we would not have.

Knowing that the strong human desire to have a genetically related child will be unfulfilled, no matter the reason, brings great sadness. It can be profoundly devastating, and I'm sure I am not the only member of this parliament or the community to experience this sadness. Yet, per my conscience, I will be voting against this bill. In my conscience, while I can deeply and personally understand the desire of some parents with mitochondrial disease to access this process, I cannot support its legalisation at this stage of scientific evidence or while significant moral and ethical problems remain unanswered. The 2018 Senate inquiry into mitochondrial donation took evidence from people with mitochondrial disease as well as from medical and ethical experts. Our Senate inquiry did not recommend that mitochondrial donation be legalised in Australia.

One of my key concerns relates to the lack of scientific evidence on the impact of human beings and our DNA when mitochondrial donation occurs. The process of mitochondrial donation results in a baby with three people contributing to its genetic makeup, which is why the technique is sometimes referred to as creating 'three-parent babies'. In Australia the cloning act prohibits the implantation of a human embryo with genetic material for more than two people, and for good reason: we simply don't know the scientific effects on future generations of altering mitochondrial DNA. The Senate report went into this in some detail, noting this is 'a foundational question to be answered prior to any legalisation of mitochondrial donation'. In the United States, mitochondrial donation is expressly prohibited for this very reason. US law also makes clear that even if a clinical trial of mitochondrial donation were to be approved it would only be permitted on male embryos, so as to avoid unknown consequences on future generations.

There are also crucial questions that have yet to be examined. The Senate inquiry pointed to those. In the interests of time I will not go through all of them, but I will flag that I am also alarmed that legalising mitochondrial donation would overturn key safeguards in Australian law relating to the creation, use and destruction of human embryos. These laws exist because the parliament has previously determined the appropriate ethical limits that should exist on the use of human embryos. Yet successive laws—in 2002, again in 2006, and now—have kept moving the goalposts, removing safeguards and taking us another step down the slippery slope.

In asking the parliament to legalise mitochondrial donation, Minister Hunt is asking the parliament to overturn key aspects of the cloning act and other laws. For example, one of the techniques for mitochondrial donation involves the creation of a viable human embryo in order to harvest it for parts and then destroy it. Many Australians share the view that such action is morally objectionable and that it should remain unlawful in Australia. Even the cross-partisan Senate report acknowledged that the creation and deliberate destruction of viable human embryos for reproductive purposes is a new moral question that deserves significant community consultation and consideration. I do not see evidence that this consultation has happened.

For me, creating embryos for the purpose of harvesting and destroying them is a moral Rubicon I cannot cross. Some might argue this is no different to creating embryos for IVF, some of which may end up being destroyed. I understand that response. My response would be: the intention in their creation matters. Creating embryos for the purpose of creating new life is something I accept. Yes, some embryos may end up being destroyed through IVF just as some embryos created through natural conception do not survive to birth. The key difference is the intention. In IVF we are not creating an embryo, a new distinct human life, for the sole purpose of harvesting, experimenting on or destroying it.

Another concern I have about mitochondrial donation is that it can require the development of a human embryo beyond 14 days outside a woman's body. Growing an embryo in a laboratory for more than two weeks has been outlawed in Australia and many other countries for decades, recognising that serious moral and scientific issues start to arise after that point in human development. In my view, this is an ethical line Australia crosses at its peril. We could see serious repercussions in unexpected ways, including, I might observe, for a woman's right to choose options in pregnancy.

I noted that in forming my conscience I sought to rely not only on my faith but also on reason—on scientific evidence. It is significant to me that mitochondrial donation is a technique that has never been verifiably used anywhere in the world. The only jurisdiction that has legalised mitochondrial donation—the United Kingdom, in 2015—admits, 'We have limited evidence on risks and success rates.' Just consider that. That is undeniably true. In over six years no baby has been born in the United Kingdom using mitochondrial donation. There have been reports of donations in Mexico and the Ukraine, where there are no specific regulations on mitochondrial donation. Those reports are somewhat unclear, and in these cases the results have been not been publicly verified by medical science.

As I said earlier, the procedure is expressly banned in the United States. We know that the United Kingdom has granted 21 licences for mitochondrial donations since 2015, and as many as eight have been subsequently approved for treatment. However, there is no public reporting available of the outcome of those treatments. To put it simply, the science is not clearly available to answer the key questions—the foundational questions, as the Senate report said—of what happens if we alter human DNA in such a way as to create a person with three people contributing to its genetic make-up.

I do not come lightly to my position of opposing this bill. I also note there are amendments that have been circulated in the chamber, and I do take a view, in general, that those amendments seek to improve this bill. Nonetheless, I would like to be clear that, even if those amendments are successful, I will still vote against this bill. I do hope that those who are listening to or reading along with this debate today can appreciate the moral, ethical and scientific questions I have wrestled with during consideration of the committee inquiry and this bill. I do come with empathy—an empathy grounded in our shared human longing for genetically related children and an empathy grown from my own experience of losing a child to a genetic condition.

There can be no doubt that some people with mitochondrial disease suffer greatly. While some of us may have had analogous experiences, I acknowledge that we cannot fully understand what it is to live with mitochondrial disease. Nonetheless, as parliamentarians, we are required to bring all of our considerations—our human empathy, our examination of the scientific evidence, and our moral and ethical convictions—to this debate and to this conscience vote. No-one pretends that this decision is easy for anyone, whether that's those people who want the laws changed or those parliamentarians who might be grappling with these issues for the first time.

Some members of this chamber will indeed choose to support this legislation. I respect their views, but in my conscience, as I have laid out here, I cannot agree. For that reason, I will be voting no.

Comments

No comments