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Tuesday, 30 November 2021
Page: 11189

Mr LEESER (Berowra) (20:40): I intend to make a short contribution to this debate, and I have wrestled, as so many members have, with the issues that underlie it. Mitochondrial disease refers to a group of largely inherited genetic conditions that can significantly lower an individual's health and life expectancy and that may be fatal. Mitochondrial disease is difficult to diagnose. Currently, there's no cure, and treatment options are limited largely to the management of symptoms. Severe mitochondrial disease can have a devastating effect on families, including the premature death of children; painful, debilitating suffering; long-term ill health; and poor quality of life. The common factor among mitochondrial disease is that the mitochondria are unable to completely burn food and oxygen to generate energy which is essential for normal cell function. This is a disease that's often inherited. Symptoms might include poor growth, developmental delays and muscle weaknesses. The risk of developing serious illness due to mitochondrial disease is considered to be from one in 5,000 to one in 10,000. One in 200 Australians are estimated to be predisposed to mitochondrial disease.

Mitochondrial donation involves the removal of nuclear DNA from a patient's egg containing faulty mitochondria and inserting it into a healthy donor egg which has had its nuclear DNA removed. This can be done before the egg is fertilised or post fertilisation. The fertilised egg is transferred into the mother exactly as per current IVF practice. As the nuclear DNA is retained, the unique genetic information that makes us who we are and determines what we look like is passed on from mother to child but the mitochondrial defects are not. Mitochondrial donation is currently prohibited in Australia, as the current act prohibits the creation of human embryos by fertilisation with genetic material from more than two people. The only country in the world where it's currently legal is the UK. What the bill before the House, the Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021, will do is amend the existing Commonwealth legislation to allow for mitochondrial donation to be introduced into Australia for research and human reproductive purposes.

Maeve's Law is named after five-year-old Maeve, who lives with Leigh syndrome. Legalising mitochondrial donation would allow impacted Australians to have genetically related children without the risk of them inheriting mitochondrial DNA defects which would drastically limit their lives. Aside from the devastating physical and emotional impact on patients and their families, many patients have repeated and prolonged hospital visits and are unable to work, and may need full-time care. Whilst mitochondrial donation techniques result in an heritable change to the genome, they do not involve gene editing of either the nuclear DNA or the mitochondrial DNA, which has been expressly prohibited in the bill.

Under this bill, donor eggs may be provided voluntarily from family members, friends or individuals who agree to donate eggs or have eggs that are in excess of their own needs from IVF clinics. A two-stage implementation approach is proposed to introduce mitochondrial donation in Australia. Stage 1: mitochondrial donation would initially be legalised for certain research or training purposes and to support selection and licensing of a pilot program to deliver mitochondrial donation to impacted families. Stage 2: mitochondrial donations would be permitted in clinical practice more broadly, depending on the outcomes and an evaluation of the initial pilot program. The role of the current Embryo Research Licensing Committee of the National Health and Medical Research Council would be expanded under the bill to include the licensing and oversight of research and training licences, a clinical licence for the initial pilot stage and future clinical practice licences using mitochondrial donation techniques. The use of specified mitochondrial donation techniques would be subject to strict licensing and regulatory conditions which would be overseen by the Embryo Research Licensing Committee of the National Health and Medical Research Council, and individuals seeking to access the program would require approval from the ERLC based on clinical recommendations.

On the ethical and other issues that have been raised by this bill, I note that my friend the member for Menzies has circulated some amendments. Some of those amendments I intend to support and some I won't. I particularly want to support the amendments relating to prohibiting these techniques for using these technologies for sex selection. I don't believe that assisted reproductive technology should be used for sex selection. I also support proposals to improve reporting requirements from the National Health and Medical Research Council.

I've considered the ethical implications of this proposal more broadly and have great respect for my friends who have serious ethical concerns about mitochondrial donation. Many of those ethical concerns are aligned with views about IVF and egg donation more broadly. I should say, both from a theological perspective and also from a personal perspective, I don't have an issue with IVF or egg donation, and it would be hypocritical for me to say that I had a view with assisted reproductive technology.

I want to acknowledge my friend the member for Boothby, who's in the chamber tonight, for the wonderful work that she has done in this place on endometriosis. Like the member for Boothby, my wife suffers from endometriosis, and we would not have our son, James, who's now 3½ nor our daughter who is due next year without the benefit of assisted reproductive technology. I, therefore, find myself in support of the use of this technology more broadly.

The other thing that I should say is in considering these matters I sought the advice of Rabbi Gab Krebs of Masada Synagogue, an Orthodox rabbi and a great scholar. In fact, he's due to become the rabbi of Moriah College next year. He consulted Jewish authorities in Israel as well on these issues, and I note the words of Lord Robert Winston, the distinguished biologist, bioethicist and Orthodox Jew. The perspective of Orthodox Judaism on mitochondrial donation, as is the perspective on IVF and egg donation more broadly, is that there is no particular prohibition in Orthodox Judaism in relation to the use of these technologies.

The interesting debates in Orthodox Judaism about the question of mitochondrial DNA relate so often, as these questions do in the Halakah, to the question of identity. If you have a non-Jewish mother who has donated the mitochondria, is the child Jewish? Or: if the non-Jewish mother is the egg donor and the Jewish mother is donating the mitochondria, because a child is a Jewish under in Orthodox Judaism if their mother is Jewish—this has raised some interesting Halakah debates which are not entirely settled, and I'm sure will continue to be debated as these matters go on.

Having considered this matter and thought about the ethical implications of my own faith tradition, I have come to the view that, subject to some of the member for Menzies' amendments which I support succeeding, the bill should be broadly supported.