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

I want to acknowledge Senator Keneally's contribution in the debate this evening. Thank you for sharing your lived experience and bringing that lived experience to the debate today. As somebody who does that a lot from a different perspective, I know it can be a really tough thing to do, and I'm sure the entire Senate will join me in extending to you our deepest empathy on that terrible loss.

I would like to read something into the record for the benefit of the chamber, because I think there's a very legitimate red flag that goes up in your mind when you hear about a new technology, a new procedure, taking place in a jurisdiction overseas that has not yet produced—as has been articulated by others in the debate—peer-reviewed research that we can reference here in the debate today. That's a legitimate red flag that would come up in people's minds. It's something that hit me when I first looked at this legislation. In fact—I'll be quite open with the chamber tonight—when, as a newly minted health spokesperson, I had this legislation land on my desk, I had a bit of sickness come into my stomach. My initial view on looking at the legislation—just skimming it—was that there would be some inherent risks in the legislation before us, that we could be heading down a path without enough research and information.

Why did I have that concern? Again, I come back to both my personal experience as a disabled person and the community's broader experience. Our experience as disabled people, historically, is that if there is a socially acceptable or medically applicable way to delete us from the social fabric, to eradicate us, that is the path that is taken. I would hope that many in this place would know that notably—although not for the first or last time during the Second World War—one of the first acts of the Nazi regime was to implement something called the T4 program. The goal and principal purpose of the T4 program was the elimination of what the regime named 'useless mouths'. Vans would trawl through communities, collect disabled people and take them to a central institution where they would be euthanised and burned. They collected disabled people, people with social disabilities—so many that the town in which the primary furnace was based was blanketed in what the residents initially believed to be snow but which turned out to be human ash.

While this program is well known, though not as well known as it should be, what's less well known is that its inspiration was not drawn from some satanic death cult or the depths of deepest depravity but modelled on a framework which was used in the United States state of California, and which more or less stayed in place until the late sixties, whereby government sanctioned sterilisation of disabled women was state policy for the purpose of eliminating disabled people.

So if there were any community with a right to look at a piece of legislation like this suspiciously, it would be the disabled community, and I brought that critical lens to this debate. In doing that, I consulted with the Mito Foundation and many organisations advocating for the bill and with opponents of the bill. What I discovered, rather than a rushed and headlong attempt to introduce a vehicle by which disabled people might be deleted or somehow expunged from society, was in fact a pretty conservative bill. It's a bill consisting of three stages, the first stage of which, as the Senate knows, is a 10-year trial. This means that over that 10 years—if we take it as being correct that about 56 kids are born per year with severe mitochondrial disease and that the average life expectancy can be as low as a couple of years and up to 12—if we pass this law today, hundreds of children will be born and will die of mitochondrial diseases before this treatment even becomes available in Australia. It's a very conservative framework. During that time there will be oversight by groups of people who I put to the Senate are some of the best experts in the country in relation to facilitated reproductive procedures.

This question of the validity or existence of the scientific output of the United Kingdom's trials has been part of the Australian discourse. One of the key medical professionals involved in the framework in the United Kingdom has written to me, and I will read their letter verbatim into the record for the benefit of the chamber:

Dear Senator

I congratulate the Australian Government in their efforts to bring forward legislation to allow mitochondrial donation to reduce the risk of disease in children born to women who carry pathogenic mtDNA variants.

I am the Clinical Lead for the licenced mitochondrial donation programme in the UK.

I understand that concerns have been raised in Australia regarding the lack of information available from the UK regarding babies born of mitochondrial donation since our legislation was passed in 2015. UK legislation and regulation has allowed for such treatment to take place in a programme that was to be cautiously introduced. As with all licenced fertility treatment in the UK, regulated by the Human Fertilisation and Embryology Authority confidentiality for patients and offspring is paramount. Our programme has progressed but with small numbers of suitable patients involved it is imperative that their privacy is guarded. We will publish programme data in due course.

This lack of clinical information should not be interpreted to imply concern about the technique but is to safeguard the privacy of infants and their families.

Yours faithfully

Dr Jane A Stewart MD FRCOG

Consultant in Reproductive Medicine

I also have here a letter from Mary Herbert PhD, from the same Newcastle facility centre, who goes into great detail about some of the challenges that have faced the UK program, not least the reality of COVID-19.

So when you question the scientists who have dedicated their lives to this, let us remember that we are in the middle of a global pandemic, where our lives more than ever before are in the hands of scientists, where the constant catchcry of most—though not all—of the members of this place is to follow the health advice. We have here clear statements from leaders in their field speaking to the reasons for the absence of data which we can analyse to this point.

I put to the Senate today that not only will we have time, as the United Kingdom recovers from COVID, to gather the UK data but we will also have 10 years of our own data, if the trial is able to be conducted methodically and appropriately, which will be ensured as it will be overseen by the experts in this field at the NHMRC.