Jordon Steele-John (WA, Australian Greens) Share this | Hansard source

Just briefly, I'll be stating my opposition to the amendment offered by Senator Canavan. The effect of this amendment, in my view, would practically result in mitochondrial donation remaining in its clinical phase either in perpetuity or for longer than is needed.

I think what is potentially in danger of being lost in this debate is the reality, as I said at the beginning of our debate on this issue tonight, that every single year 56 kids are born with severe mitochondrial disease. Nothing in this bill—not a single part of it—is a cure for those 56 kids that are born every year. Those families—those parents—will still have to live with the unutterable pain of watching someone they love more than anything in the world slip away, knowing there is nothing that they can do.

The Mito Foundation's support of this proposal, and the advocacy that the community has displayed, isn't in the hope of legislating a cure for those who they love and know they will lose. It is an attempt to prevent such pain and suffering from visiting itself upon anyone else.

The legislation before us today—and I'll say it again—is a very conservative piece of legislation. Ten years is a long time. For 10 years, kids will be born and they will pass away and families will be torn asunder. What we have before us tonight is a question of whether at the end of that 10-year period there is a potential for a treatment widely available to the public that would prevent such tragedy from visiting itself upon any other families in this nation. This is a well-thought-out three-step process—a clinical and scientific process. I remind the chamber that we sit here in a global pandemic, and we owe our lives and our health to science and to the idea that we will put our faith in public health professionals and we will put our faith in scientists.

If at any time it comes to the attention of the Senate that information has been put into the public arena that would see us want to halt one of these stages, then disallowable instruments are open to us. I find it ironic that some contributing to this debate who have utilised the disallowable instrument effectively are speaking now to its ineffectiveness. If they would like it to be a more effective instrument, may I suggest that they liven up the idea of voting for the disallowance of regulated instruments among their party room colleagues. If more people voted to disallow instruments more often, it'd happen more often. That's the solution if you think that's a problem. Members of the government and members of the Senate could sit down with Senator Fierravanti-Wells and the Scrutiny of Delegated Legislation Committee. I've got many good ideas about how to improve the oversight powers of this Senate. How I would love to see this place play its role as the house of review rather than the subservient rubber stamp of the executive! I would absolutely love it. You bring a bill tomorrow that solves some of those problems and come back to the next sitting with that attitude, and I'll meet you there. But let's not confuse that with what is before us today. What is before us today is an opportunity to say that, for the next generation of parents, there may be a solution on the table that will prevent their suffering.

There have been a lot of conversations in here about unknowns—scientific and ethical unknowns. It's very interesting that we're talking about science and ethics and that it is playing such a part of this debate. It's good to see. I hope it heralds the return of a conversation about ethics and conscience and science in this place. We shall see when the debate concludes. But let us at this moment take this step forward. And, if we are concerned with questions of uncertainty, let us comfort ourselves with the knowledge that one thing at the moment is certain: 56 kids will lose their lives to mitochondrial disease every single year. Let us hold that as the statistical evidence it is, and let it compel us to act and to take the opportunity that is presented to us by this legislation to ensure that this suffering is not visited upon others. Let us not pretend that amendments put before this place, presented to us as improving the ability of the legislature to oversight this program, will have any effect other than the prolonging of the outcome of that much-needed research and the potential of that so hoped-for preventative measure.

So I will not be supporting this amendment offered by Senator Canavan, and I urge all of my Senate colleagues, as they take this vote tonight, not to allow themselves to become unmoored in a consideration of what might be. Keep yourselves focused, fellow senators, on the reality of what is.