Jenny McAllister (NSW, Australian Labor Party, Shadow Cabinet Secretary) Share this | Hansard source

I rise to speak in support of the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021, which seeks to enable mitochondrial donation. I don't intend to detain the Senate for very long, but I did think it important to place the reasons for my support briefly on the record.

More than once a week, a baby is born in our country with a truly debilitating form of this genetic disease. It robs the body's cells of energy, it causes multiple organ dysfunction or failure, and sometimes it causes death. Each week, up to 30 children who are at risk of developing a mild or moderately disabling version of this disease are born in Australia. It's very difficult to diagnose. There are currently very few effective treatments against mito.

One of the features of the last few years in the pandemic is that so many of us in this place have had to confront illness and disease. Wherever individuals in this chamber have landed on this bill, I know that we all recognise the suffering endured by a parent who cares for a very sick child. Too many of us have had to have those conversations in recent years.

Mitochondrial donation offers hope for a woman at risk of transmitting mitochondrial disease to her child, and it also offers hope to her partner and to her broader family. It is unquestionably a remarkable moment in science. It's one which offers immense benefits to those amongst us who have suffered from this disease. As humans, we have been gifted with the capacity to build and extend our knowledge, and in our lifetimes we have witnessed extraordinary developments in scientific capability. We have also been gifted with a capacity both for reflection and for foresight. Whilst I'm not a person of faith, I am in the camp that often counsels caution about new technology. We should always consider the social and ethical consequences of adopting new technologies. In this particular debate, I am grateful for the many people who have engaged deeply over many years in public discussion about the ethical characteristics of this technology and who have assisted in defining the regulatory safeguards and systems which are proposed in this bill.

All new technologies present risks. As humans, we have proven ourselves capable at times of using technology in the most disastrous of ways. Our only path, as I see it, is to avail ourselves of our immense capacity for ethical deliberation and for human empathy, and to consider the ways that we might best use technologies to serve our communities. My instinct is that this must be a profoundly democratic, deliberative process. In the end, as we have seen in example after example, it is rarely possible to shut the box on a new capability. Our only path is to work together to talk about how we might use a new capability and to make sure that we are collectively comfortable, that it fits within our broader goals and our aspirations for ourselves as a community and as a people.

One of the strongest characteristics of the bill before us is its capacity to enable further discussion and debate about the application of this technology. It provides a legal framework to allow the continuation of research on mitochondrial donation and its application in a clinical environment. It contains safeguards which define and constrain the application of the technology. As the EM explains, it introduces this technology in a staged and controlled manner, with a two-stage implementation approach. This is intended to allow for the expansion of scientific evidence to ensure that the techniques are safe and effective and are undertaken in an ethically appropriate manner.

As I said, in its regulatory design, it specifically enables a continuing public conversation about the technology at hand. Ultimately, though, it is a technology that has the capacity to alleviate real suffering. It gives Australians who have this disease the opportunity to raise a healthy family. It's on this basis I will be supporting the bill.