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

There are a couple of points that I would like to make in speaking to this amendment this afternoon. First of all, as we discussed a little bit last night, I think it's important to acknowledge the structural conservatism of the legislation before the chamber currently. That is to say that, if this bill passes today, it will trigger one of three stages of this overall legislative process.

Stage 1 is a trial of 10 years in duration. As I observed last night, on average, 56 kids are born with severe mitochondrial disease every single year. That means before we get to the point 10 years down the road of broadly offering the public and parents the opportunity to make a choice to undergo a procedure that may save the life of a child, about 560 kids may well have lost their lives. A decision has been made in the course of the crafting of this legislation—informed as it has been by multiple Senate inquiries and community consultation—that the duration of that waiting period and, therefore, the potential for that loss of life which may have been prevented by the earlier provision of these services to the public, is the correct balance to be struck. That's the proposition that has been put before the chamber by this legislation. The proposition of such a long trial period is why the proponents of this bill and the community organisations that have been campaigning for this bill see this moment as bittersweet. That's because, even if the legislation passes, they know that their suffering and sadness will be perpetuated, year on year, through many families before such a medical opportunity for the prevention of that suffering is offered to the community.

Within that context, we consider Senator O'Neill's amendment. I will note two aspects of this amendment. Firstly, that it asks us to, in addition to that 10-year trial period, and the conclusion of that 10-year time period, add another barrier to the provision of this technique to the community. It asks that we add the barrier that the procedure, the technique, has been used on at least 20 trial participants, meaning that, at the conclusion of the 10-year period, there would be another benchmark to be met. I ask the chamber, and I have asked myself, whether such a number is inherently arbitrary in its nature.

We saw in the House of Representatives Mr Andrews offer an amendment which was different in its nature. It asked for five positive outcomes. That's rather than 20 trial participants. But it was no less arbitrary in the selection of its number. It was five positive outcomes. It could have been 10, four, 15, 20 or 34. It was up to him. It was about what made him feel personally comfortable. So it is, too, with this amendment. Twenty trial participants are offered to us today. It could have been 15, it could have been five or it could have been 40. The proposition in this amendment is that, regardless of what has been gained through the clinical studies carried out by the NHRMC by, as we heard last night, some of the eminent minds in the nation in relation to IVF treatments, who have been doing this work so well since the early 2000s, we should add an additional barrier of an arbitrary nature.

Given that constant ticking clock of life and the suffering that will be the reality of kids that will already, as I said, be born in their hundreds between the passage of this legislation and the provision of this service to the community, I personally believe that that is an unacceptable and unnecessary additional barrier. I do not think it adds value to this legislation to insert an arbitrary number simply because it meets a level of personal comfort. This is not a scientifically informed number. This is an arbitrary number for personal comfort. We here this afternoon are considering a piece of legislation which turns upon the axis of science. So let us have faith in the experts, as we have had faith in the experts during the pandemic. Let's not put arbitrary barriers in the way of the provision of this legislation.

The second point I will make is in relation to subsection (b) of the amendment, which seeks to have the outcomes of the use of the technique on the trial participants published. We circle back again to this question of public scientific data. Last night I read into the Hansard a letter sent by one of the eminent scientific experts leading the work in the United Kingdom setting out explicitly that the absence of scientific publication of the outcome of this legislation is to in no way be interpreted as anything other than the impact of COVID-19 combining with the complexity of the United Kingdom's privacy requirements in relation to assisted reproductive techniques and that those privacy requirements are being worked through. In due course, those findings will be published. We in this Senate have no reason to believe that statement to be anything other than a true and accurate reflection of what has taken place in the United Kingdom.

We also know that this legislation gives us 10 years in which to see the findings of the UK processes that are playing out and to play our role as scrutinising legislators when making inquiries of the NHMRC. So many avenues are available to us to scrutinise this process, and we should apply ourselves to that scrutiny, not place arbitrary barriers in the way of a much-needed advancement in medical science. For those reasons I will be opposing the amendment, and I urge the entirety of my Senate colleagues, including those across the chamber, to join me in that opposition.