Andrew Laming (Bowman, Liberal Party) Share this | Hansard source

[by video link] Thank you, Deputy Speaker Goodenough, for the second opportunity. I too strongly support the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. Mitochondrial disease is a group of inherited conditions that can significantly reduce an individual's life expectancy. Maeve's law, as it has been colloquially named, is the proposition that we can allow the staged introduction of mitochondrial DNA donation techniques into Australia.

This story goes back many years. I was a medical and public health adviser under the Howard government with then minister Kay Patterson. At the time, the assisted reproduction debate around embryonic stem cell research came to the fore. This was a highly complicated piece of legislation. It's interesting that today is one of those few moments where that legislation is further amended. Of course, it's very hard to see where this kind of legislation will lead. I'm extremely proud of the work that I know that any government at that time would have done to ensure that embryonic stem cell research were possible. It's also a credit to how far society has moved and that, if science has the ability and the overwhelming benefit is clear—not just a net benefit but overwhelmingly so—the community is willing to countenance what, a generation ago, we couldn't have conceived. That is what this debate is all about. I commend the courage of other members contributing tonight.

This bill is amending existing legislation. There has effectively been a prohibition on mitochondrial donation here in Australia, but my training as a GP obstetrician gynaecologist back in the UK introduced me to early work in this space and another controversial area of legislation that Australia addressed back in 2006: the controversial use of RU486. The irony, of course, is that abortifacients and technology like this find themselves under the general purview of obstetrics and gynaecology as far as specialist medical training goes. I pointed out back in 2006 the irony of working back in 1991 and 1982 in the UK for the first time in obstetrics and gynaecology: that one would work all morning counselling infertile parents only to then be performing terminations of pregnancy in the afternoon. It's incredibly morally stressful.

To hear the stories that have been recounted by colleagues tonight in the chamber and early parts of the debate, we know just how much this means to you. The fact that this may be a disease that, in its severest form, may affect one in 50,000 Australians or one in 10,000 is no reason to say, 'I'm happy to roll the dice and, if I'm lucky, not worry about those who have to live with mitochondrial disease.' If it is within our powers then we should address it. I want to recognise Catherine McMahon, an absolutely committed and steadfast former policy adviser who has taken up the reins to see this legislation passed. Thank you, Catherine, for your great work. Over the last few years this has been a very, very committed campaign. I congratulate everyone involved for getting to your federal MPs and, hopefully, making this path as smooth as possible.

This two-stage approach is really important, having research and training as well as further evidence being collected over time. It also allows the community to become more comfortable with these decisions. As I pointed out back in the RU486 debate, it's not just about safety and efficacy. It's not just about the TGA saying that a process has been assessed and therefore it's stamped and can happen. We need to take the community with us. It was for those reasons during the RU486 debate that I felt the community needed more say. I felt that, if there were something that completely changed the landscape, as an abortifacient would, that should be a decision that came to the parliament and to the people and not just a decision of the health minister.

I actually moved an amendment that, while not successful, pointed out just how important changes like this are and that they need to come before the parliament. There were throwaway lines I recall from the Australian Greens at the time: 'Do we have this debate every time there's a new abortifacient introduced?

Are we going to have a debate like this every time a new mitochondrial technique is introduced?' Hopefully, no, but for moments like today it's very important that these issues are being brought to the chamber, brought to the parliament and transmitted nationwide. It's very important to make sure that everyone realises that there has been a thorough consultation phase and process, which I'll talk about in a moment.

I want to clarify a few things because many people have characterised these changes as more significant than they really are. This is ultimately about looking after people who are likely to have children who wouldn't have normally functioning mitochondrial DNA, which impacts the function of mitochondria. This only assists those who have an mRNA deficiency or defect, so it's about half of all cases, but it can have catastrophic effects in those that are affected. The symptoms can be seizures, muscle pain, fatigue, vision loss—very close to my heart—hearing loss and heart problems. I've talked about the odds of it appearing: about 60 children each year are affected by the severe form. There are 60 very good reasons to follow the UK's lead because they've always been very forward-leaning in this space. There are 60 very good reasons to acknowledge that there is no cure and that, if there is a scientific solution and a medical treatment, every Australian deserves the right to make their own decision about whether they should have access to it, if it has been established as being safe and effective and consulted on with the community. Obviously, I recommend that we watch the UK very closely.

The legislation being considered tonight is very similar to what's been done in the UK. I remember the HFEA conducting their public consultations in the UK. That was a very important process and one that we've followed here. We had the Senate inquiry three years ago. The Senate community affairs references committee carried out the inquiry. I remember the findings being that there was a need for more consultation and more scientific review. But remember that time is ticking and, every time we delay these matters by a year, Australians are affected and living with the impacts of mitochondrial disease for life.

Two years ago the NHMRC conducted a series of community consultations exploring moral issues around changing these rules and how the community felt about them. I think that was very important. It noted these issues associated with mitochondrial donation, including the creation and destruction of embryos, and the beliefs that it could potentially create children with more than two parents or that it's a form of genetic modification. I think those questions have been fairly answered and, on balance, adequately answered.

Many supported the introduction of this two-stage regulatory approach. It's a lovely model going forward, should further changes ever happen to this legislation. The first stage is that mitochondrial donation itself would be legalised for particular research and training purposes and would support the selection and licensing of clinical trials where you could look more closely at the impact and success of mitochondrial donation and how it affects impacted families. Then a second clinical trial, a single one, should be allowed to run for a number of years. The Commonwealth Department of Health should potentially run a competitive grant process to identify who would run that. The licensing committee, the ERLC, should then have an expanded licence and regulatory role to oversee the mitochondrial donation process and its licensing, ensure that those that carry it out are adequately trained, administer applications and monitor compliance with these new laws.

I commend every member who has gotten to know families who are living with mitochondrial disease, and I commend those families for getting out to see their MPs and getting this parliament to a position where it certainly wouldn't have been 10 or 15 years ago when embryonic stem cell research was first considered. This is not the leap that that was, but this is a very important tinkering—a recognition that mitochondrial DNA is completely different from nuclear DNA and that it offers incredible hope for a small number of families. It's a transformational piece of science that can give life, health and longevity to those who would otherwise be affected by this terrible disease. This bill has my full support.

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