House debates

Tuesday, 30 November 2021


Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021; Second Reading

8:47 pm

Photo of Stephen JonesStephen Jones (Whitlam, Australian Labor Party, Shadow Assistant Treasurer) Share this | Hansard source

I come to the dispatch box in the debate with the necessary degree of humility. I was a lawyer before coming to this place, not a scientist. Everything I know about the science of this is based on what I've read of scholars far more learned in these subject matters than I. I'm also not a person who lives with the disease. Every bit of personal knowledge that I have about mitochondrial disease has been gleaned from listening to the exceptional debates that have been given by colleagues in the chamber over the course of the last three days, the things that I've read and from consultations with local constituents who've been forthcoming with their views and personal experiences, some of which I'll reflect upon in my contribution.

The bill, if passed, will legalise the donation of healthy mitochondrial DNA into egg cells. It'll allow the use of a safe and highly effective medical procedure, which has now been proven overseas for a number of years. It was first legalised in the United Kingdom in 2017. The US also allows the procedure, although under more limited circumstances. But, most importantly, and the thing that is bearing upon my consideration of the issue, it's going to help to ease needless pain and suffering, and that has been determinative of my approach to the issue.

Mitochondria is the cell structure that makes our daily miracles possible. It has its own DNA structure separate from the nucleic DNA that determines what we look like. I didn't know about these things until I researched the background to this bill, and I'm a better person for it. Mitochondrial DNA, on the other hand, is the power grid for human existence. Laughing, running and even sleeping—none of this would be possible but for the energy that mitochondria provides at the molecular level, so a minor defect in mitochondrial DNA can cause major health issues. It is often very fatal for a newborn babies. It also causes a wide range of complications for sufferers old and young—stroke, deafness, blindness, even childhood dementia. Those with a defective gene can live for years without even knowing it until the debilitating symptoms begin to appear. There is no cure. The best hope to defeat this disease is its prevention. That is the hope contained within this bill, and it is why I will be supporting this bill.

Along with the modified IVF technology with which so many Australian families are already familiar, this bill will allow doctors to replace mutated mitochondrial DNA with healthy DNA. In doing so, it will break the chain of hereditary gene defects and begin the march towards eliminating mitochondrial disease. It is not beyond the realms of possibility that, like other diseases, it could be eradicated. In Australia, this would save 56 babies a year from either premature death or a lifetime of pain or needless limitation. It would save the families of those children the anguish that raising a child with this condition bears. It would reduce just a little bit of the pressure on carers by reducing the demand for the resources that they lovingly, without a grudge, provide to support them. This is exactly what this parliament should be doing.

I acknowledge those who argue these clear benefits must be weighed against the religious, ethical and moral convictions, and the cost and benefit. The medical procedure that this bill would allow involves the transfer of healthy mitochondrial DNA from a donor egg into the egg of a mother carrying an embryo. As such, it requires a donor egg, which, as various submitters have argued, means the creation of that egg for the specific purpose of carrying out that medical procedure—that is, not of conception but of carrying out this procedure. Submissions from many faith groups and others have raised questions about the ethics of this. We cannot and should not blithely dismiss or disregard these objections. I respect their convictions on those issues, but I personally am of the belief that the benefits to those 56 families of the 56 infants born with mitochondrial disease every year outweigh these ethical considerations and concerns. Those babies and their families deserve a chance at a life without the pain and limitations that mitochondrial disease brings.

If some choose not to take up the medical option that the passing of this bill would provide because of their personal convictions, I understand that. But I don't believe that it is the role of this parliament to prevent that option being available to those families who know with some certainty that they will be passing this disease on to their children. This point was brought home to me loud and clear earlier when I took the time to discuss the issue with a constituent of mine, Rhonda Murray. Rhonda has faced mitochondrial disease across generations of her family. I want to thank her for her advocacy. She told me of how the disease robs the body of energy and how it can strike vital organs at any time without warning. Strokes, hearing impairment and severe fatigue can suddenly develop with little or no warning.

Rhonda's mother was 40 years of age before she began showing the crippling symptoms of fatigue and multiple strokes. Once the symptoms take hold, there is no turning back; they are there for life and they are untreatable. When symptoms occur in babies, the results are serious and often fatal: difficulty breathing, difficulty eating and listlessness. Rhonda herself has inherited the genetic mutation that causes mitochondrial disease and has, in turn, passed it onto her two daughters. She's fighting hard, along with her family and others, to get this bill passed. She's not doing it for her own sake—her fate is sealed—but so that her daughters can one day go on to have healthy children of their own in the knowledge that they won't be passing that disease onto another generation of Murrays. Hearing Rhonda's advocacy on this issue on behalf of her future grandchildren was powerful, to say the least. So I'll be voting on the bill and I'll be considering the amendments that have been foreshadowed. I understand that the member for Menzies takes a different view to me on these. But I know him to be a thoughtful contributor to debates in this place so I'll be considering the amendments that he moves on their merits, together with those that have been foreshadowed by other speakers in this debate and moved by government members or others.

On a day on which this parliament has been occupied by some of the worst behaviour that we've seen this year and—can I put it without passing judgement—some of the less wonderful debates, I think it is a pleasure for all members of this place to be closing the proceedings on a debate where we've seen some of the very best contributions, even from those who I strongly disagree with. In my view, a conscience vote in this parliament always brings out the very best. Some of the debates that I've heard in this debate and in other conscience debates in this place have been of a very high calibre indeed. It just goes to show that our democracy is robust and it brings forth some of the very best and the very worst that we see in public discourse in this place and outside of this place.

I'll be voting for the bill. I thank members of this place for the opportunity, and all of those who've put their effort into ensuring the bill comes before this house before the close of this session this year.


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