Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021

I don't intend to speak on the provisions of this bill; other speakers have already explained in detail how they work. I also don't intend to speak about the arguments in favour of the bill; these have been very well canvassed and will no doubt be explored much further. Instead, I want to talk about love. It's not something we often discuss in this chamber but it lies at the heart of so much of what we do. As senators, there are issues and policies we advocate for because they are sensible or rational solutions to problems that exist. But there are other things we advocate for—things we champion out of love, things that are very much close to our hearts, things we desperately want to see done, things that give us a reason to be here.

The bill we are debating today, the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021, is not a matter of love for everyone. Some will vote with their heads. Some will vote based on their religious beliefs. And some will vote with their hearts. But this bill is certainly a labour of love for some—some senators, some members of the other place and, most importantly, some Australians whose lives have been touched by mitochondrial disease. They want to see a relatively small change in law but one with massive ramifications for those trying to understand, treat and prevent mitochondrial disease. Their motivation is not personal gain—far from it. Their motivation is not fame or fortune. Their motivation is simply to reduce the amount of incredible and needless suffering in this world.

That change would allow for changes to be made to the human genome. I appreciate there are those, particularly in some religious circles, who do not think this is appropriate. Their view is that this is not a utilitarian matter—not a question of cost and benefits but a matter of principle and duty. I can see how that fits with their beliefs, their values and their ethics, but there are some moral issues where the pros so outweigh the cons. This is very much one of them. Mitochondrial donation is a very important issue that this chamber needs to deal with and deal with in this sitting period.

Back in 2018, I participated in the inquiry by the Senate Standing Committee on Community Affairs into the science of mitochondrial donation. It was one of the most powerful and gut-wrenching hearings I've been involved with. What I heard and what I learned has stayed with me for many years. Mitochondrial disease is not just a medical condition. It's not like flu or a scraped knee. It's not a mild irritant that will soon pass. It is a death sentence. Think about that for a moment. It is a death sentence—no doubt about that at all—which is delivered before a child takes even his or her first breath. It's a death sentence which will only come after months, years or even decades of distress, pain and suffering. It's a death sentence which condemns families to anguished lives from seeing their child live the worst possible life. It's a death sentence which leaves bereaved mothers unable to conceive out of fear that the same tragic fate awaits their next child. I simply cannot imagine anything worse.

I cannot imagine the amount of suffering, anguish and pain this awful disease imposes on people. It affects many people; potentially one in 5,000 Australians is born with mitochondrial disease and serious health implications. That is a staggering number of people who face staggering pain. If we can do something to reduce the scale of this suffering or even to prevent it entirely, we have an absolute moral obligation to do so. I heard the arguments and read the objections in the 2018 inquiry, but, to be completely honest, I cannot accept them. I cannot accept there is a system of ethics or morality, rational or spiritual, which accepts this amount of suffering as acceptable. Certainly, it cannot be a system based on love because love is the antithesis of suffering.

I most certainly will be supporting this bill. I ask every other senator listening to this to think seriously about what they love and who they love and to ask themselves, if it were their child, or their grandchild who was suffering from mitochondrial disease, whether they would not give everything they have to make this change to ease that suffering.