Rachel Siewert (WA, Australian Greens) Share this | Hansard source

I present the report of the Community Affairs References Committee on mitochondrial donation, together with the Hansard record of proceedings and documents presented to the committee. I move:

That the Senate take note of the report.

This committee report is very significant for members of our community, particularly those who are affected by mitochondrial disease. I'd like to take this opportunity to particularly thank the members of our community who made submissions to the inquiry and actually came to the hearing we had for this inquiry. They presented, in many cases, very deeply personal information that was distressing for them. The committee makes four recommendations.

The report has five chapters and we go through an explanation of the disease. Perhaps some people in this chamber but also in the broader community don't know what mitochondrial disease is. In fact, I've got to admit that I knew very little about mitochondrial disease until we undertook this inquiry. Mitochondrial disease is caused by mitochondrial genes that have mutated. Mitochondrial disease has many distressing impacts on people. It can lead to the premature death of a child. Mitochondria are responsible for the energy in your cells. If they are not working properly, it means that parts of your body that require lots of energy are primarily affected. For example, it can affect your brain, your heart, your eyesight and your hearing. In fact, we heard of these impacts. For those affected by mitochondrial disease, it can affect the mitochondrial DNA or it can affect the nuclear DNA. Mitochondrial donation applies to the 50 per cent of mitochondrial disease that is caused by mutations on the mitochondrial DNA. Where it could be effective, two types of mitochondrial donation could occur. The bottom line is that you replace the mitochondria in a cell which has affected genes with a donor's mitochondria. The gene mutations in mitochondria are passed down matrilineally, which means that they're passed down from mothers to their children.

I want to get to the recommendations. There are other speakers here. Senator Slade Brockman just came in and I'm sure will make a contribution. He actually initiated this inquiry, supported by Senator Di Natale and members of the ALP. It's important to note that he really was driving this. We made four recommendations. Recommendation 1 says:

The committee notes the strong potential of mitochondrial donation to address the debilitating effects of inheriting mitochondrial disease. The committee recommends that public consultation be undertaken regarding the introduction of mitochondrial donation to Australian clinical practice. To facilitate this consultation, the committee further recommends the Australian Government prepare a consulation paper, including options for legislative change that would be required. The Minister for Health should seek advice from the National Health and Medical Research Council on the most appropriate timing and format for this consultation.

As I said, our committee report has five chapters. We deal with the basics in chapter 1, in terms of what mitochondria are, the nature of the disease and what the donation involves. Then we deal with living with mitochondrial disease. The name sends a message that we talk about what the impacts are of the disease. As I articulated, they're very dire. I should also note this disease can lead to the deaths of children. But the impact of the disease varies, and we had somebody talk to us about this. A person aged around 40 can suddenly be affected by stroke, because it affects the energy in your brain. We had evidence from somebody who lost their sight. And we had evidence from people who lost their hearing. So it has many different effects.

We talk about the science of mitochondrial donation. I'm won't go into the detail of that, other than to say it's quite technical and there are a number of techniques. And because there are a number of techniques, there are a number ways that legislation, for example, can be affected. It's very obvious, from the inquiry, that the cloning legislation would need to be amended to enable mitochondrial donation. We also talk about the ethics of mitochondrial donation, because it raises issues about what technique you use for mitochondrial donation—whether you use the maternal spindle technique or the pro-nuclear technique. The pro-nuclear technique involves the fertilisation of both cells and extracting the pro-nucleus of the cell where the mitochondria are being donated. This is why we make the recommendation that there needs to be public consultation on this. We also consider that while we undertook some public consultation there would be public consultation around the legislation that would need to be amended. We articulate in our report that there needs to be wider consultation.

There's no doubt in my mind that this mitochondrial donation has a very strong potential for helping those families who are affected by mitochondrial DNA where the disease is inherited. There's no doubt in my mind that this has potential. But there are some things that need to occur if this type of donation technique is to occur. There is also no doubt in my mind that it would help affected people and those who have genetically linked children. It would certainly help. We heard many accounts of the debilitating impact of this disease and what it means to people who carry the genes and don't want to pass them on—women who don't want to pass this disease on to their children.

I'll leave it at that because I know others want to make a contribution. I would like to thank the secretariat, for their excellent work on this report, and my colleagues. We really worked very hard to reach a consensus position on this report, and I would like to acknowledge the generosity that everybody brought to the table in order to discuss this very important and, some would say, very delicate topic.