Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021 - Speech, House of Representatives


It is rare that we have an opportunity in this place to cast a conscience vote. It occurs about once every term of parliament, the most recent being the marriage equality vote. In an era in which Australians are increasingly becoming disconnected from politicians, in which the levels of trust in government are waning, I chose to use this conscience vote as an opportunity to engage in a deliberative democracy exercise in the electorate of Fenner.

I acknowledge the member for McMahon, who alerted me to the fact that this bill, the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021, was to come before the House, and, as a result of that conversation, I collaborated with the University of Canberra's Centre for Deliberative Democracy and Global Governance and the Institute for Democratic Engagement and Accountability at Ohio State University to put in place a series of town hall meetings, one online and one face to face, with randomly selected constituents in Fenner to flesh out the issues around mitochondrial donation and to inform my decision.

This was inspired by the Connecting to Congress project in the United States, which was run by the Ohio State University, but also by many other deliberative democracy processes that have occurred. The City of Melbourne used such an exercise to plot a 10-year trajectory for the city. The City of Adelaide is also using deliberative democracy processes to put in place a local planning frame. The Western Australian City of Greater Geraldton was the world winner for community participation and engagement with the United Nations International Liveable Communities Award, which recognised an exercise in deliberative democracy that they had done. The City of Canada Bay Council in Sydney's inner west put in place a participatory budgeting process, and I acknowledge their mayor, Angelo Tsirekas, who led that process. The Wyndham City Council in Melbourne's west has put in place deliberative democracy through appointing regular citizens to committees there.

As deliberative democracy practitioner Lyn Carson observes, deliberative democracy processes are 'a way to find out how randomly selected citizens without vested interests think about an issue when presented with detailed information from differing viewpoints and given support to discuss it in a non-adversarial way'. Successful deliberative democracy processes at a state level have involved VicHealth's 2015 Citizens' Jury on Obesity, which over a two-day period explored strategies to reduce the problem of excessive body weight. Its 78 jurors presented government with 20 recommendations, including food labelling, water fountains and healthier food in schools. In the ACT, in 2017 and 2018, the government used a deliberative process to consider possible reforms to third-party car insurance. Around 50 randomly selected jurors met for two weekends to define their priorities. An expert reference group devised four models to be considered. The jurors met again over two more weekends and finally voted in favour of a no-fault scheme. That scheme was put in place last year and is expected to save motorists over $100 on their insurance premiums and expand coverage by 40 per cent.

I go through these examples to illustrate the value of deliberative democracy and the way in which it can improve our decision-making as well as better connecting citizens to parliament. I've been particularly concerned this term about the issue of democratic disconnect, and the deliberative democracy exercise is just one of the ways I've sought to try and address it. Another major one is a series of tele-town halls, engaging with voters across the electorate on issues that matter to them in a way that is for many people more convenient than coming to the physical town halls that we conduct.

I want to acknowledge the researchers and the facilitator who assisted with these deliberative democracy processes: John Dryzek, Selen Ercan, Michael Neblo, Jon Kingzette, Amy Lee, Nick Vlahos, Wendy Russell, Nicole Curato, Nardine Alnemr and Hannah Mills. Their careful work helped ensure that the conversation stayed focused and respectful throughout.

I was struck by the willingness of Canberrans to engage deeply with the issue of mitochondrial donation and with the ethical, legal and scientific complexities behind mitochondrial donation. I was impressed that some of those who came along had taken the time to read up in advance, and it very much informed my thinking. There were issues raised about the surrogacy process and the impact on people who go through surrogacy. There was a genuine curiosity about the objections to the legislation. There were questions about whether the mitochondrial donation might change the child's DNA, and I think there was great reassurance from a recognition that the mitochondria—the powerhouses of a cell—wouldn't affect the sorts of genetically acquired traits such as hair or eye colour. There was a recognition that mitochondrial donation might be shaping the way in which parliament thinks about other genetic reproductive processes and an acknowledgement that each time we step forward on this it may have an impact on how we consider other issues.

There were some of my constituents who asked in the deliberative democracy forums about how their views would be weighed along with expert views and, I think, there was some surprise when I said that the views of the deliberative democracy forums would be the main prism through which I would consider the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021. There was a feeling among many who attended the online forums that it was invaluable that parliament was moving ahead of this issue, recognising that, while Britain had done so, many other countries had not.

The overwhelming sentiment among those who attended the forum was to support mitochondrial donation, and I will be voting in favour of this bill. I recognise that wasn't a universal view; we weren't seeking unanimity, nor indeed were we looking to have a vote cast in the deliberative forums. That's not the nature of deliberative democracy. It is much more about the conversation and about being able to have these kinds of respectful conversations in the community—conversations conducted in non-partisan paragraphs rather than partisan soundbites. There was an acknowledgement that we are making decisions which are ultimately uncertain and that none of us can be absolutely sure about what will happen, but also that mitochondrial disease is often fatal and that the stories that others have told in this place—such as, of course, the story of Maeve Hood—are tragic stories that no parent would ever imagine as anything other than their worst nightmare. It is with that spirit that many of us approach this conversation.

I would encourage other members of parliament to consider deliberative democracy processes when future conscience votes arise. I agree with comments that have been made earlier on in this debate: that we should have more conscience votes in this House. Occasionally, I will look fondly on the British Labour Party, with its three-line whip, allowing a position between 'Do whatever you like' and 'Vote the party line', in which members of the British Labour Party are encouraged but not mandated to vote a certain way on certain bills.

In those cases, and in the case of conscience votes, deliberative democracy processes can help to bring citizens into the public conversation. It's vital that we do this; all members of the House should be committed to it, but it is a particularly important project for those of us on the progressive side of politics—for those of us who believe that government does have a powerful role in improving people's lives. We on this side of the House are the party of Medicare, the party of the National Disability Insurance Scheme, the party that put in place the pension and gave it its biggest increase in more than 100 years. Therefore, it is incumbent upon progressive politicians—social democrats—those of us in the Labor Party—to be ensuring that we maintain trust in government. Because when people don't trust government then the small government claims, with the sort of rhetoric of Ayn Rand and Ronald Reagan, that 'government isn't the solution, it's the problem' and those sort of antigovernment views take root.

Progressives have to be engaged in that great project of building trust with the Australian people. We can do that through providing opportunities like physical and virtual town halls, through being there on street corner meetings and through engaging positively on social media with those who agree with us and those who oppose us. And there is an important place for deliberative democracy processes.

I want to particularly thank the University of Canberra researchers, kicked off by John Dryzek, without whom the deliberative democracy process would not have been possible. It was a good academic exercise and it will build up the academic literature, but I'm taking some time tonight to talk about it with you, my fellow parliamentarians. I know that the door of the University of Canberra is always open. There are great deliberative democracy researchers in Australia who are keen to work with people on all sides of the parliament. There is an enthusiasm among the experts to engage with members of parliament and build the knowledge base and the expertise on deliberative democracy. I found it a terrific experience, and I hope that it is something that many more members of parliament will do.


Authorised by Paul Erickson, ALP, Canberra.

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  • Mark Forrest
    commented 2022-11-26 01:44:54 +1100
    Mitochondrial donation, also known as mitochondrial replacement therapy, is a technique used to prevent the transmission of mitochondrial diseases from one generation to the next. This is accomplished by replacing the defective mitochondria in a person’s cells with healthy mitochondria from another person. This technique is still in its infancy, but it has the potential to revolutionize the way we treat mitochondrial diseases.

    Mitochondrial diseases are often debilitating and can be fatal. They are caused by mutations in the mitochondrial DNA, which is passed down from mother to child. These mutations can cause a wide variety of symptoms, including muscle weakness, heart problems, lung problems, gastrointestinal problems, and diabetes. There is currently no cure for mitochondrial diseases, and treatments are often ineffective. Some supplements can help in the treatment, like those offered by IHerb:

    The donations offers a way to prevent the transmission of these diseases. By replacing the defective mitochondria with healthy ones, we can prevent the diseases from being passed down to future generations. This could potentially eradicate mitochondrial diseases altogether.

    The technique is still in its early stages, and there are some risks involved. There is a small risk that the donor’s mitochondria could be rejected by the recipient’s cells. There is also a risk that the donor’s mitochondria could malfunction and cause problems in the recipient’s cells.
  • Alf May
    commented 2021-12-04 18:04:21 +1100
    This sounds very civilised.

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Cnr Gungahlin Pl and Efkarpidis Street, Gungahlin ACT 2912 | 02 6247 4396 | [email protected] | Authorised by A. Leigh MP, Australian Labor Party (ACT Branch), Canberra.