Louise Pratt (WA, Australian Labor Party, Shadow Assistant Minister for Manufacturing) Share this | Hansard source

I seek leave to submit a contribution from Senator Wong to be incorporated into the Hansard.

Leave granted.

The document read as follows—

I support the passage of the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021.

In recent months, I have been contacted by so many people urging support for Maeve's Law: parents suffering the tragic loss of a child from mitochondrial disease, their advocates, and even researchers dedicated to avoiding these tragedies.

It is impossible not to be moved by their stories.

I want to mention one South Australian mother who wrote to me, Suzie, who lives in the Adelaide Hills.

While her community was being devasted by the Black Summer bushfires, she was suffering an additional heartbreak, as her baby Dot succumbed to mitochondrial disease.

Courageously, she has turned her grief into powerful advocacy, raising awareness of a disease that can be incredibly serious for young children. I want to thank Suzie for sharing her story with me, acknowledge her work, and the work of everyone advocating for Maeve's Law. I also acknowledge the contributions of my colleagues who have held the Health portfolio in recent years - Ms King, Mr Bowen, Mr Butler - and indeed the Minister for Health, who have all helped get us to this point.

Suzie's heartbreak is all too common. On average at least one baby is born every week with severe mitochondrial disease, and most of those babies will die within the first five years of their life.

The Mito Foundation estimates that one in 200 people in Australia carry the genetic change that puts them at risk of developing mitochondrial disease or passing it on to their children.

Understanding how mitochondrial disease works explains why we can't overcome it without Maeve's Law.

Mitochondria make energy within the body's cells, meaning they are critical for cell survival. Mitochondria have been variously described as the powerhouse or battery pack of a cell. Mitochondria have their own mitochondrial DNA, and mitochondrial disease can be caused by mutations in the mitochondrial DNA or in nuclear DNA.

The effects of mitochondrial disease can vary considerably, from mild to life threatening.

It mostly affects the parts of the body that require the most energy - like the brain, muscles, kidney and heart. In some cases the symptoms can be managed, but in serious cases there is no effective treatment, and there is no cure.

Mitochondrial donation is an assisted reproductive technology that, when combined with IVF, has the potential to allow women whose mitochondria would predispose their potential children to mitochondrial disease, to have a have a child without that disease.

A number of colleagues have described the two techniques at length, so I will summarise with a quote from my colleague in the other place, Mr Butler, who said:

" … These techniques these techniques use the donor's egg, which is not particularly novel a well -known technology and the donor's mitochondrial DNA. The donor's nuclear DNA that is, all of the DNA that goes to make up what we'd understand to be the unique characteristics of the donor as a person; their appearance, their personality, their intellect a nd so on is removed from the egg and it is replaced by the nuclear DNA of the mother. So all of those characteristics that we would understand to be inherited from our mothers all come from, all flow from, the nuclear DNA. And that nuclear DNA from the mo ther is inserted into the donor's egg along with the battery pack, along with the mitochondrial DNA. That is a very important distinction between the nuclear DNA and the mitochondrial DNA."

As it stands, these donation techniques are currently prohibited.

Maeve's Law - or its more formal title of the Mitochondrial Donation Law Reform Bill 2021 - will legalise mitochondrial donation for particular research, training and reproductive purposes. It introduces safeguards to ensure that the techniques are safe, effective and properly regulated, and to protect the privacy of persons who make use of these techniques.

It will introduce mitochondrial donation in a staged and closely monitored way, first focusing on research and training, and the second stage commencing when regulations are made prescribing donation techniques for use in clinical practice. Before that could occur in any State or Territory, that State or Territory would need to enact its own laws authorising the use of the technique.

I understand there are some in our community who hold genuine concerns that this Bill presents risks - that it is a pathway to designer babies and gene editing.

I urge those who have such concerns to read the excellent publications produced by the Mito Foundation or the comprehensive report of the Senate's Community Affairs References Committee which conducted an inquiry in 2018 into the science of mitochondrial donation and other matters - and I thank my colleagues Senators Keneally, Pratt and Watt for their hard work on that inquiry.

Their work affirms that mitochondrial donation works by preventing the transmission of mitochondrial DNA diseases to a child by creating an embryo with nuclear DNA from the intended mother and mitochondrial DNA from a donor.

It does not contribute to a person's genetic identity because mitochondrial DNA only provides energy to the cells - unlike nuclear DNA which is responsible for a person's physical and cognitive characteristics. In other words, a recipient of donated mitochondrial DNA will not resemble the donor.

My contribution to this debate is as a private senator; this is a conscience issue for both major parties.

In voting their conscience, I urge all senators to evaluate the work our colleagues have done on this issue, and consider the terrible grief suffered by too many Australian families and facing the tragic loss of young Australian lives.