Louise Pratt (WA, Australian Labor Party, Shadow Assistant Minister for Manufacturing) Share this | Hansard source

Today I speak in favour of the Mitochondrial Donation Law Reform (Maeve's Law) Bill. I know people consider this bill to be a test, in some cases, of their dearest convictions and closely held beliefs, and it certainly speaks to mine. The debates before us tonight have evolved over time, alongside human scientific discovery and our need to legislate ethical frameworks for science and, indeed, demand for and developments in reproductive technology.

I voted in the state parliament of Western Australia in the early 2000s to ban human cloning. It was important at the time, and there were debates about making genetic copies. It was, nevertheless, put forward at the time that it would be the role of the legislature to amend or change those preclusions based on changing the ethical framework in the context of new discoveries and ensuring continued scientific development in a proper scientific and ethical framework.

In this case, the bill before us is not really about gene editing. That's not what we're doing here. It's about mitochondrial DNA and its donation. It's about DNA that comes from outside the nucleus, from which all our personal attributes come. In the case of this bill, I don't put an overemphasis on excess embryos or believe that it's like cloning or that it creates three-parent children. I don't believe it does, and, indeed, expert evidence demonstrates the same. This bill is about preventing painful and unnecessary death. It is not about legislation to prevent physical diversity or about designer babies.

Many of us will remember from school science class—for some of us, it's the only thing we've remembered!—that mitochondria are the powerhouse of the cell. I don't know if you remember that from science class, but I certainly do. Mitochondria produce 90 per cent of the energy that the body needs to function. For people without proper mitochondrial material in their cells—can you imagine anything more difficult and horrifying?—it feels like you've got the flu all the time, with the utter pain that comes with that, only getting more and more extreme. It's not just a physical variation; it is a painful and catastrophic condition for many people, especially for young children who have a severe form of the disease. As part of an inherited condition, it lowers people's health and life expectancy. It's caused by a mutation in mitochondrial DNA or nuclear DNA in a individual. Although the number of people born with the disease is low, one in 200 people are estimated to be predisposed to mitochondrial disease and also to be carriers. Here today we have an opportunity to support reproductive science that prevents this cruel disease.

If mitochondrial donation is successful, it's not going to prevent all cases of the disease but, hopefully, over time, it might reduce its incidence in the Australian population. To use this technology you will of course have to know that you're a likely carrier and that you and your partner's genes will combine to create a child that has a high likelihood of the disease, so it won't be a panacea or prevent all disease. Of course, people are still going to have sex, and they're still going to have babies without the benefit of this technology. It highlights the importance of people understanding their own genetics and their genetic history.

I believe, as I said before, that mitochondrial donation is not human cloning, gene editing or the creation of a three-parent child. It is an assisted reproductive technology that could be used in addition to IVF treatments, enabling a woman whose mitochondria would predispose her to children with mitochondrial disease to have a biological child who does not inherit that trait by using donated mitochondrial material from a donated egg or embryo. It involves the extraction of nuclear genetic material from the prospective mother's egg and the placement of that material into a donor egg which has its own genetic material removed, keeping its own mitochondria.

We know that this technology isn't going to help people who are suffering through this terrible disease right now, or those who will unknowingly pass this trait on, but the evidence from overseas does show that mitochondrial donation could stop the inheritance of mitochondrial disease and give people a long and healthy life. So what good reason can there be for not preventing such a painful death in a young child? That is the reality for children born with mitochondrial disease: most will die in their first five years.

I was on the inquiry which investigated the science of mitochondrial donation back in 2018, and I thank the Mito Foundation group for pushing for the law reform that is before us today. The parliament and the government have been cautious. At the time, we found that further research and community consultation needed to be done and, over the past couple of years, it has been done. The National Health and Medical Research Council along with the Department of Health have done just that. They've undertaken a series of community consultations looking into community attitudes to ethical, legal and social issues associated with introducing mitochondrial donation.

When we look to the motivation of many people in the chamber here, yes, they have their own concerns about the creation of excess embryos and the destruction of those embryos, and that is a valid ethical concern for them and many other Australians. However, IVF and reproductive technology is widely used in Australia, and that technology comes with all of those ethical questions around excess embryos, the scientific research and all of those different ethical questions. We all know children who have been created through reproductive technology. I'm a very privileged mother to have had the opportunity to have a child through IVF, so it's no surprise to me that there's significant community support for this legislation and the technology but also, as outlined, concern over the rollout.

People have recommended a regulated approach with ongoing safeguards and ongoing monitoring, which is the case in the legislation before us. There are several protections in the legislation, including counselling for parents about the potential risks and alternative options such as gamete donation. Those protections are all there in the kind of counselling that's available to people using this technology. It's also consistent with gamete donation and other counselling provisions which are well known. Privacy for parents and children is a top priority, as is mandatory reporting for any adverse events. Mitochondrial egg donors are not, of course, considered legal parents. These are all well-known frameworks within our existing reproductive technology landscape, and I think it is really important for this chamber to understand that in the context of it being put forward that this is somehow extremely novel and unknown. It is not. It has been part of the landscape of reproductive technology for decades now.

The bill has included in it a staged and closely monitored path forward, with the first stage legalising mitochondrial donation for certain research and training purposes, including undertaking a clinical trial. Should this legislation pass, I certainly wish all of the families and donors involved in that all the best. The bill implements a cautious approach consistent with other reproductive technology. In relation to mitochondrial research, as we know, it's based on the approach used in the UK, which has been in place since 2015. As a mother who has used IVF to have my beautiful son, I understand the stress of infertility and the willingness to endure countless IVF cycles to make a family. The debates about donor conception and the need for children to understand their genetic origins are also important. But, frankly, in that regard, this bill has less complexity in it than legislation dealing with other donor conceptions, I think. There are other options that remain in play for people who carry these genetic variations—you can use a donor—but they are at least as complex as those dealt with in the bill before us. Donated genetic material is hard to come by. I think it will be easier for donors who know they are donating their mitochondrial DNA rather than all their DNA, which is the case for someone who requires an egg donor to bypass carrying this trait forward.

I also note that from November 2021 many patients can claim a Medicare rebate for preimplantation genetic testing. I was offered this after a number of failed IVF cycles, but it seemed to me: what was the point? It was many thousands of dollars per test. It is little wonder that I decided simply to do more cycles of IVF and forgo the test on the embryo. The kinds of tests that are available currently offer no solution when all of your embryos carry this kind of trait. Again, for those worried about excess embryos, the alternative is years of failed IVF cycles—yes, more embryos and more expense under the current fertility options for these families.

IVF raises myriad ethical questions. One not particularly related to this bill—but many of our debates overlook some of the most fundamental issues in reproductive technology—is the social and economic conditions that mean people delay having a child to start with and then have to resort to using reproductive technology. I would hope that those of you in the chamber who are opposed to IVF might work with others who support it to address some of these underlying issues on which we agree. I certainly hope that mitochondrial donation research will mean fewer IVF cycles and, in the future, healthy babies for many more Australian couples.

This bill has been extensively consulted on and thought through. It has a system in place that will ensure its ethical application. I consider myself extremely lucky to have a healthy child, and in supporting this bill I do so because I want to support other parents to have the same opportunity—an opportunity to have a healthy child of their own. I'm proud to support the legislation before us today.