Senate debates

Thursday, 10 February 2022

Bills

Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021; In Committee

1:14 pm

Photo of Kristina KeneallyKristina Keneally (NSW, Australian Labor Party, Deputy Leader of the Opposition in the Senate) Share this | Hansard source

I rise in support of Senator O'Neill's motion. I acknowledge and give support to the comments of Senator Canavan. I think it's important for senators to remember the lack of data around the very scheme that we are being asked to legalise. There is a significant lack of data. It is the case that this technique would create a human being the type of which is expressly prohibited from being created today—that is, a human being with three people contributing to its genetic make-up. In this debate I've heard some senators make claims that none of the mitochondrial DNA actually affects the unique characteristics of who we are. That's not entirely true. In fact, I would encourage senators to read the report that came out of the 2018 Senate inquiry. We simply do not know the scientific effects on future generations of altering mitochondrial DNA. We simply do not know.

The Senate report went into this in some detail. The Senate report said this was 'a foundational question to be answered prior to any legalisation of mitochondrial donation.' Let me repeat that. This is a Senate report. These are not dissenting comments; this was a cross-partisan report from an inquiry chaired by our former colleague Greens senator Rachel Siewert, who did remarkable work. I was a member of that inquiry. It said that this is 'a foundational question to be answered prior to any legalisation of mitochondrial donation'. I would argue, based on the lack of evidence available to us—in fact, I did argue this in my speech on the second reading—that we have not answered that foundational question. In being asked to vote on this bill, we have a foundational question that has not been resolved.

I will come to how this amendment improves slightly on the bill by helping us try to put in a stage where that foundational question is resolved. Allow me to remind senators: in the United States, this technique is expressly prohibited. It is not permitted in the United States. The only jurisdiction that has legalised mitochondrial donation is the United Kingdom. We know that from the debate. In 2015, they legalised it. The department of health in the United Kingdom states on its website, 'We have limited evidence on risks and success rates,' of mitochondrial donation. That is undeniably true. In over six years, no baby has been born in the United Kingdom using mitochondrial donation. There have been reports—unverified reports—of babies born in Mexico and Ukraine. They have not been subject to any independent scientific verification or determination of whether or not the children are healthy or, indeed, whether they were born alive and healthy. We are literally legislating in the absence of evidence.

I've heard some senators make the observation that we should rely on science. I would be quite happy to rely on science. The reality is there isn't much science available to us in legalising this. I understand—and the arguments that Senator Steele-John puts—that this is a multistage process and we're going to have these clinical trials and we're going to get the science. If we're going to get it, what is so wrong with this parliament ensuring that there is a robust evidentiary base and that it is publicly verifiable? That is what this amendment does. It is this parliament's way of saying that if we are going to move to the next stage then we should be sure that there is a robust evidence base and that it is publicly verifiable.

It's not just about trusting the science; we also need to share it with the public. We need to take the public with us if we're going to make changes like this. Imagine where we would have been in COVID if we hadn't had information available to us to make decisions about booster shots, about vaccination, about mask wearing and about social distancing. We took the public with us, because we were able to share the science with them. That is what this amendment does.

In the United Kingdom, there have been 21 licences granted for mitochondrial donations since 2015, and as many as eight have been subsequently approved for treatment. However, there is no public reporting available for these outcomes. Senator Steele-John posits the argument—I'm not quarrelling with him—that this might be because of COVID and it might be because of privacy concerns. If we take the latter—privacy concerns that haven't been resolved—that's a failure of the UK parliament that we should not repeat.

Senator Canavan moved an amendment about the clinical trial stage not automatically moving on after ten years. That was voted down by the Senate. We also sought last night to put in a stronger regulatory regime through amendments. That was also rejected by the Senate. I acknowledge that. But what I would say in response to arguments put by Senator Birmingham is that there's nothing automatic in here. This does not automatically move us, after 20 trials, to the next stage. And this is the kind of thing we do in legislation all the time—we put in things in the legislation so that, if something is going to move on to another stage, appropriate benchmarks have been met before that happens.

So my frustration here is that this is not a barrier to moving on to the next stage of a mitochondrial donation; it is actually a safeguard. I do think, when we are legalising a technique where there is almost no verifiable scientific evidence to answer what our own Senate committee found to be a foundational question, that is it is entirely legitimate—indeed, it's entirely unremarkable—for the Senate to ask that there be some robust evidentiary base and that it be shared with the public. That's all this amendment does. It doesn't seek to create a legal barrier. It doesn't seek to exclude any other consideration. I've heard some senators raise a concern that perhaps you need more than 20 trials. Perhaps you do, but how will we know that unless we're able to be confident that 20 have happened and we're able to see the evidence for ourselves and take the public with us.

So I would encourage senators to just consider that we are legislating for something that is going to go for more than ten years. We are legislating for something where decisions are going to be taken by executive governments. People who might sit in those positions may not have even been elected to parliament yet. We have given away our capacity to have that decision come back to the chamber. We did that last night in rejecting one of Senator Canavan's amendments. We missed an opportunity to get a stronger regulatory regime in place for what is a novel and untested technique.

This amendment is simply making the rather unremarkable request that we have a solid evidence base and that it is publicly verifiable and able to be examined by the parliament and by the Australian people.

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