Karen Grogan (SA, Australian Labor Party) Share this | Hansard source

I rise in support of the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. This is a matter of conscience for Labor senators and, I believe, the first conscience vote that I have participated in in my time here. My conscience tells me that we should allow this science to be investigated and developed here in Australia and ultimately allow the opportunity to save the lives and prevent the suffering of thousands of Australians.

Mitochondrial disease can have severe and profound impacts on sufferers. I would like to thank the Mito Foundation for taking me through the realities, experiences and stories of this disease and its impact on its victims and to recognise the enormous amount of work that they do to support people and their families suffering with this disease.

This disease affects around one in 20 Australians in some way, and around one baby a week is born with a severe form of it. There is no cure. Some people who are affected by mitochondrial disease are fortunate enough to not experience many symptoms, while others are completely and utterly devastated by its impacts. Whether it's enormous fatigue, developmental delays, seizures, muscle pain or hearing loss, these symptoms can have a debilitating effect on a person's quality of life and a resultant impact on their family. Fundamentally, mitochondrial disorders impair the body's ability to produce energy, and so mitochondrial disease can affect every organ in the body, as every organ needs energy to function. This is most severe in the brain, which uses an enormous amount of energy. Issues in the brain can have a devastating impact on our lives.

Mitochondrial donation gives us an opportunity to fix the problem before a person is born and before the lifelong effects of mitochondrial disease begin. This treatment, as we've heard from many others, is fundamentally an assisted reproductive technology. It doesn't end the suffering of people who are suffering from mitochondrial disease today, but it might prevent the next generation from experiencing that pain.

I acknowledge and respect the concerns that have been raised by some in this chamber and by stakeholders and some members of the public. But we need to be very clear: this is not a process to select the characteristics of your baby; it is a very specific clinical process to save lives. This is a relatively new set of procedures. The UK remains the only country to date that has changed its laws to allow for mitochondrial donation, and that was only in 2015. An update from one of the research organisations in the National Health Service in the UK has provided advice that their progress has been delayed due to COVID-19 but that their progress so far has been very positive. We don't have the benefit of lifelong experiences of people born after mitochondrial donation procedures were performed, and so we do need to be cautious, but we have no shortage of stories from people who've spent their lives struggling with mitochondrial disease. We know the devastation it can bring to sufferers and their loved ones.

To their credit, the government have undertaken a thorough process to get us to this point. The Community Affairs References Committee of this Senate considered the issue in 2018, taking public submissions and issuing a series of recommendations for further examination. The National Health and Medical Research Council explored the issues in 2019 and 2020 through its Mitochondrial Donation Expert Working Committee. This bill was the result of a process of consultation undertaken by the Department of Health last year. So it's clear this process has not been rushed; nor has it been a tool for scoring any sort of partisan or ideological points. By contrast, it has been thoughtful and considered, and the bill it has resulted in similarly reflects a considered and cautious approach.

The bill would not immediately legalise mitochondrial donation. Instead, this bill provides for a two-stage process. Stage 1 is expected to last for some 10 years. Only a limited number of licences will be granted for mitochondrial donation for research and training. They would not be available for general clinical use and will be closely monitored by the special committee of the National Health and Medical Research Council. Only at stage 2, well into the 2030s, will mitochondrial donation become available for clinical purposes. Even then, the states and territories will need to opt into the scheme and will likely need to undertake their own legislative processes to do so.

I know this will be cold comfort for those families currently suffering with mitochondrial disease, and it will be especially tough for those who want to start their own families but know that doing so will carry the risk of their children being affected by this disease. It will be especially tough for those who are looking at this situation and are dealing with the day-to-day effects of this disease on their current children. But, on balance, I support this approach. It gives us certainty that we will understand the long-term effects of this incredible technology while also providing hope to affected families.

There are quite detailed provisions relating to records which will need to be kept and maintained relating to the children born through these processes. I think that is very important not only for the scientific study and research purposes but also for the rights of the children born through this process.

In closing, I want to reiterate my support for this important piece of law reform. I also want to pay my respects to the Australian science community and the truly amazing work that they do on so many issues. They have the talent and the patience to bring the science behind mitochondrial donation to fruition and to turn hope into reality for a lot of Australian families.