Amanda Stoker (Queensland, Liberal Party, Assistant Minister to the Attorney-General) Share this | Hansard source

Mitochondrial disease can be serious and debilitating. It causes a range of symptoms, including muscle and neurological problems with symptoms that can range from the mild to the severe, and sometimes it can prove fatal. Between one in 5,000 and one in 10,000 Australians will develop severe mitochondrial disease. For those individuals affected—Australians like Julian, Shelley, Rosie, Alana, Pippa, Kara, Dot, Marcus and so many more—the seriousness of the condition is only compounded by there being no cure at this stage. This bill offers hope to each of those people and their families, and that hope is so important. These people's lives matter. Every life matters. Yet those two short sentences carry with them the very difficulty of this bill.

The Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 sets out a legal framework for mitochondrial donation. In doing so it provides hope for a world without mitochondrial disease, but it does this by allowing in this country—we'll be only the second country in the world to permit it—five different experimental procedures, some of which require human life to be created and then destroyed during the donation process. That's why, after careful consideration of this bill and the procedures it allows, and with something of a heavy heart for those families who I know are looking for answers, I can't support it in its current form.

Mitochondrial donation is not a cure for mitochondrial disease; it instead aims to prevent children inheriting the mitochondria that causes the disease. This is a really worthwhile goal. While mitochondrial donation is yet to lead to a successful birth—as I mentioned, the UK is the only country to have legalised the procedure to date—this on its own shouldn't be a deal-breaker. We all want Australia to be a leader in medical research because we all want Australians to get the best possible medical care. That inevitably that has to involve experimentation. But our desire for medical progress must be balanced against the nature of the research involved and the ethical ramifications of it for the rest of society. In the case of this bill I believe it ignores ethical implications in the hope that it will lead in time to viable medical treatments.

Mitochondrial donation involves a permanent modification of the human germline. That's not germs as in bacteria, but, rather, a reference to genetics. The procedure involves combining the genetic material from two females in order for eggs and zygotes to be created without the genetic disease. A human embryo created through this process will contain, necessarily, the genetic material of more than two people. That is an ethical boundary that causes me concern.

The reasons for wanting a treatment of this kind are completely understandable, particularly from those who carry the disease. It must be heartbreakingly difficult for those who desperately want to become parents but know they carry the gene. I can only say how much empathy I have for those in that position. But we're only in the very early stages of understanding the human genome. We have a limited understanding of genetics, and there's a real risk that our experiments will cause off-target effects—in other words, unintended consequences that occur due to editing the genome in the wrong place. The consequences of our actions won't only affect the child born through a successful procedure; it will affect all of their future descendants.

It's important to stop and think about the ethical threshold we may be about to cross. By allowing genetic manipulation to reduce disease, we are permitting genetic manipulation that could equally be used for a host of non-therapeutic purposes. It's not beyond contemplation that the science used in mitochondrial donation could be used for other, more troubling, purposes. These include editing the physical attributes of a child or creating human enhancements. I regard both of these as unethical, especially if human lives are created and then destroyed during the donation process in order to make it possible.

There are, as I understand it, potential methods by which mitochondrial donation may be able to be pursued without creating human lives solely to end them for the purposes of donation. I'm open to the pursuit of treatments that don't require such ethically troubling steps. I'm open to amendments that will enable treatments to be pursued for mitochondrial donation that don't involve the creation of embryos for their destruction. I remain troubled by the risks of the editing process and the use of the genes of more than two people to make a child. Ultimately, it's not right, in my view, for the life of one human to be prioritised over another, or used as parts for another. There is goodness in every human. There is dignity in every human, and there is the spark of the divine: unique talents, gifts and contributions to be made in every single human. That's why I can't, in good conscience, support this bill without amendments that adequately safeguard against these risks.