CTH Bill to Legalise Mitochondrial Donation (Maeve's Law) Introduced Into House of Representatives
Tuesday 30 March 2021 @ 9.48 a.m. | Legal Research
On 24 March 2021 the Minister for Health and Aged Care Greg Hunt (‘the Minister’) introduced the Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021 (‘the Bill’) into the House of Representatives. The Bill seeks to amend certain Acts to make mitochondrial donation legal in Australia, with the ultimate goal of preventing children from being born with mitochondrial disease. As the legislative framework stands, mitochondrial donation is illegal under the Prohibition of Human Cloning for Reproduction Act 2002 (Cth), and the Research Involving Human Embryos Act 2002 (Cth).
The Bill has been named “Maeve’s Law” in honour of five-year-old Maeve Hood, who lives with mitochondrial disease. The Minister ended his second reading speech by commending the Bill to the House “with every fibre of [his] being”, emphasising that the Bill seeks to protect future children from the “insidious disease”.
The Minister said in his second reading speech that the Bill would be subject to a conscience vote that had "been called for jointly by the major parties".
Background of the Bill
The Minister began his second reading speech by providing information about mitochondrial disease. He outlined that the disease has no cure, and that it “leaves children suffering from seizures, fatigue, multiple organ failure and heart problems, [and] in severe cases, even premature death”. He continued by stating that approximately one in 56 children are born with severe mitochondrial disease each year, and that the severe disease has a "tragic" prognosis.
The Minister then said that reproductive technology has advanced so that, with a donor’s assistance, it can be used to prevent the passage of mitochondrial disease from mother to baby where a woman’s mitochondria would otherwise predispose her child to the disease. The Minister clarified that the technology the Bill proposes to legalise could not be used to cure those already living with the disease, rather, it could be used to prevent babies inheriting it in the future.
The Minister highlighted that the development of the Bill was informed by the United Kingdom’s experience with legalising mitochondrial donation, as well as wide consultation in Australia, including a Senate Inquiry in 2018 and a study by the National Health and Medical Research Council (NHMRC) in 2019-20. Information gathered from the Senate Inquiry, the NHMRC, as well as a public discussion paper released by the Department of Health in 2021, identified “significant community support” for a “cautious and nationally regulated approach” to mitochondrial donation.
The Bill's Two-Stage Approach
The Bill proposes a two-stage approach to legalising mitochondrial donation. The Bill, should it be assented, will provide for the following:
- Stage 1: Establishment of a “carefully selected, licensed and Commonwealth funded” trial clinic, allowing some families to access the technology in order to determine the “safety, efficacy and feasibility of the technology preventing serious mitochondrial disease being passed from mother to child”;
- Stage 2: Dependent on the success of Stage 1, this stage will allow the technology to be made available more broadly across clinical settings in Australia.
Furthermore, the Bill proposes a “comprehensive licensing regime”, to ensure that the technology is used “safely and ethically”. The Bill also provides for close vetting and overseeing of organisations by the NHMRC, throughout the process of licence applications and compliance with conditions.
The Minister acknowledged that while support for the legalisation of mitochondrial donation in Australia is strong, it is not universal, and he noted that this sort of legislation raises concerns from members of the community of various belief systems, in relation to issues such as:
- Embryo creation and destruction;
- Informed consent;
- Donor rights; and
- New scientific technologies
The Minister recognised that different communities and their members will have different comfort levels with the proposed legislation, therefore he emphasised that this would be reflected in a “free vote – the ability to vote with conscience – that has been called for jointly by the major parties”.
Ultimately, the Minister said that the Bill seeks to legalise mitochondrial donation in Australia, so that future parents and children “don’t have to suffer the devastating consequences of mitochondrial disease”.
The Minister concluded his second reading speech by saying that the Bill, should it be assented, would “reduce the burden of disease for future generations”, and keep Australia “at the forefront of advances in both medical science and reproductive technology”.
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Mitochondrial Donation Law Reform (Maeve's Law) Bill 2021 (Cth), second reading speech, explanatory memoranda and related materials available from TimeBase's LawOne service.