About mitochondrial donation
Mitochondrial donation is an assisted reproductive technology which can help some women to avoid transmitting mitochondrial disease to their biological children.
The term refers to a number of different techniques aimed at ensuring only healthy mitochondria are passed on to an embryo.
Used with in-vitro fertilisation (IVF), mitochondrial donation techniques allows a reproductive clinic to create an embryo which contains the:
- nuclear DNA from a man and a woman (the prospective mother)
- mitochondria in an egg donated by another woman (the mitochondrial donor).
This approach minimises the risk of a prospective mother transmitting mitochondrial disease to her child.
It cannot, however, cure people with existing mitochondrial disease or prevent mitochondrial disease caused by a mutation in nuclear DNA.
Why it is important
Severe mitochondrial disease can have a devastating effect on families, including:
- the premature death of children
- painful debilitating and disabling suffering
- long-term ill-health
- poor quality of life.
In Australia, between one in 5,000 and one in 10,000 people develop severe mitochondrial disease during their lifetime. Around one child per week is born with a severe form of the disease.
Introducing mitochondrial donation could prevent some children from suffering from this life-threatening disease and reduce the burden of mitochondrial disease into the future.
Maeve's Law
In March 2022, the Australian Parliament passed a Bill to allow the use of mitochondrial donation to prevent transmission of severe mitochondrial disease.
The Mitochondrial Donation Law Reform (Maeve’s Law) Act 2022 took effect on 1 October 2022.
The Act introduces mitochondrial donation through a staged approach under strict regulatory conditions.
Stage 1 permits carefully regulated lab-based research and clinical trials of mitochondrial donation techniques for use in human reproduction.
Under stage 1 the Australian Government will invest up to $15 million over four years to fund a clinical trial at one carefully selected clinic.
Ongoing monitoring and evaluation of the trial will help determine the safety and effectiveness of the procedure in minimising the transmission of severe mitochondrial disease from a mother to her child.
Learn more about the Mitochondrial donation consultation activities.
Mitochondrial Donation Donor Register
Under Maeve’s Law, the Secretary of the Department of Health, Disability and Ageing must keep a Mitochondrial Donation Donor Register (the register).
The register will keep a record of information about children born alive as a result of a mitochondrial donation technique and their mitochondrial donors.
The register will record the following information on mitochondrial donors:
- full name
- place and date of birth
- residential address at the time the donor consented to the use of their egg
- any other information about the donor that has been prescribed by the Research Involving Human Embryos Regulations
- any other information provided by the donor to include on the register.
The register will record the following information on children born as a result of a mitochondrial donation technique:
- full name
- sex
- date of birth
- any other information about the child that has been prescribed by the Research Involving Human Embryos Regulations
Information held in the register will not be made publicly available.
Applying for access to information on the register
People born as a result of mitochondrial donation will be able to apply for access to their donor’s information once they turn 18 years old.
Donors will also be able to apply for access to their own information. Donors will also be able to make updates to or correct information about them held on the register.
Applicants will need to provide documentation to verify their identity before information can be released or updated.
Privacy Impact Assessment
We engaged the law and consulting firm, Proximity, to prepare a Privacy Impact Assessment (PIA) considering the privacy impacts associated with the establishment and management of the Mitochondrial Donation Donor Register.
Read the summary PIA report.
Learn more
The National Health and Medical Research Council (NHMRC) is administering the Mitochondrial Donation Pilot Program through The mitoHOPE Program | Monash University. MitoHope under the leadership of Monash University were announced as the successful grantee on 13 March 2023.
For more information on the Mito Foundation – Hope for mitochondrial disease.
A public consultation process on the proposed approach to introducing mitochondrial donation in Australia, ran from 5 February 2021 until 15 March 2021.
Read the summary report.
The National Health and Medical Research Council (NHMRC) consulted extensively on the ethical, scientific, and legal issues with mitochondrial donation. Read about the consultation and work undertaken by the NHMRC in 2019‑20.
You can also read the Australian Government response to the 2018 Senate Community Affairs References Committee Inquiry.
