The Road to Legalising Mitochondrial Donation

Following the resumption of the debate in Federal Parliament on Wednesday 30 March, the conscience vote to pass the Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021 received overwhelming support with 37 Senators voting in favour of the Bill and only 17 against.

Federal Senators participated in a thorough and balanced debate on the Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021 during the first three parliamentary sitting days of 2022, ending on 10 February.

While the debate on the Bill itself concluded, the debate and vote on each of the nine proposed amendments could not be completed in time.

Debate on the remaining proposed amendments to the Bill, and the conscience vote on the Bill itself, will carry over to the next Senate sitting days on Tuesday 29 and Wednesday 30 March.

Following a convincing majority vote in the House of Representatives on 1 December 2021, a majority of votes is required in the Senate for the Bill to be passed.

Mito Foundation would like to thank all members of the mito community, the general public, the medical and research community for their input to date in this process. We will keep you updated as the next steps unfold.

In July 2021, The Senate Community Affairs Legislation Committee conducted an Inquiry into the Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021.

The intention of such an Inquiry is to review the draft legislation and consider whether it fulfils the intended goal.

After a process of calling for submissions and two Senate Inquiry Hearings, the Committee published its report on 18 August 2021.

The Bill and accompanying documents can be accessed here.   

Mito Foundation would like to thank all members of the mito community, the general public, the medical and research community for their input to date in this process. We will keep you updated as the next steps unfold.

The Mito Foundation has welcomed the Australian Government’s continued investment in life-saving research for mitochondrial donation with $4.4 million (over 4 years) announced in the 2021-22 Federal Budget on 11 May 2021.

The investment commitment follows the recent introduction of The Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021 into the Parliament on 24 March this year, which paves the way for legalising mitochondrial donation in Australia.

Mito Foundation CEO, Sean Murray, said continued research into mito is crucial to preventing mito in future generations.

“Every week in Australia one child will develop a life-threatening form of mito – that’s 50 Aussie kids a year.” Mr Murray said.

“Every parent has the right to ensure they can give their child the healthiest and happiest life possible.

“We would like to thank the Government for its investment into further mito research and specifically into establishing a regulatory and licensing framework and clinical trial for mitochondrial donation.

“This is a really positive step forward for Australian families exposed to the potentially devastating effects of mitochondrial disease.”

Severe mitochondrial disease can lead to the premature death of children, long-term ill health including seizures, heart problems, organ failure, childhood dementia and poor quality of life.

Maeve’s Law is the next step towards preventing mitochondrial disease (mito) in future generations of Australian kids.

The Australian Government is committing $4.4 million over 4 years, and a total of $10.3 million over 10 years from 2021-2022 into the staged implementation of mitochondrial donation in research and clinical settings in Australia.

On 24 March 2021, Minister Greg Hunt introduced the Mitochondrial Donation Law Reform (Maeve’s Law) Bill 2021 into the Parliament. This followed the recent public consultation into the government's proposed two stage approach to introducing mitochondrial donation.

Minister Hunt made a heartfelt speech and acknowledged five-year-old Maeve Hood who lives with mito and after whom the Bill has been named. You can read more here.

We are encouraged by Prime Minister Scott Morrison's impassioned public endorsements throughout the process. Read more here.

Liberal, National and Labor MPs and Senators will be allowed a conscience vote on the Bill which is expected in the coming months. To become law, the Bill needs to pass both the House of Representatives and the Senate with a majority of votes.

The Government has stated its commitment to preventing future children in Australia suffering from mito. A consultation paper has been released and members of the public are invited to share their views before March 15.

The proposed approach is to introduce mitochondrial donation into Australia through a two stage process. Initially, mitochondrial donation would be legalised for use in research settings and through an initial pilot clinic, before permitting it in clinical practice more broadly, after success has been demonstrated over a number of years.

Click here for more information and to read the consultation paper and have your say.

The National Health and Medical Research Council (NHMRC) launched a public consultation into legalising mitochondrial donation to seek views from the Australian community on the social and ethical issues involved.

The consultation consisted of an online portal allowing individuals and groups to make their own submissions as well as a series of in-person forums across Australia.

Public consultation closed in November 2019. For more information on the outcomes of this process and the final report from the NHMRC Mitochondrial Donation Expert Working Committee click here.

Mito Foundation welcomed the government response to recommendations from the Senate Inquiry on mitochondrial donation in Australia, which recognised the need for swift action for those impacted by mitochondrial disease (mito).

Changing the law to enable Australian parents access to mitochondrial donation was deemed critical given that one child every week is born who will develop an avoidable form of mitochondrial disease. Many of these children will die.

The foundation welcomed the commitment to develop a process for public consultation by the end of April 2019 and that its implementation could then be expedited.

The foundation remained confident, having undertaken significant stakeholder engagement with politicians and members of the community, that Australians would support giving parents the choice to have children free from mitochondrial disease. Other research, including a Citizens’ Jury completed by the University of Sydney, reflected the attitudes shown in other jurisdictions.

The submissions to the 2018 Senate Inquiry demonstrated that the overwhelming majority supported legislative change to enable mitochondrial donation.

Underpinning the public consultation was the Government’s commitment to consult with scientists and other experts about mitochondrial donation before April.  The foundation ensured that it was well prepared and resourced to contribute to this process.

The foundation appreciated the Government’s decision to progress engagement with the Council Of Australian Governments (COAG) Health Council on mitochondrial donation and was hopeful that this could be expedited to enable Australian families access to mitochondrial donation as soon as possible.

The foundation acknowledges the government’s approach to the recommendation regarding access to international services for those Australians desiring to access mitochondrial donation in the short term.  This approach recognised the challenges for those who are running out of time to have their own healthy, genetically-related children.

The Inquiry recognised the impact that mitochondrial disease has on peoples’ lives and the foundation remained determined to work closely with the government towards access to mitochondrial donation for our community.

Read the Government’s response to the Senate Report

Read our response to the Government's response

Read the Senate Report

Read our media release

Read our Position Statement

Read our Senate Inquiry overview document