The Australian Government Department of Health and Aged Care (the department) and National Health and Medical Research Council (NHMRC) undertook consultation processes to provide an opportunity for members of the public, peak bodies, experts and other interested stakeholders to consider mitochondrial donation in the Australian context.
Australian Government Department of Health and Aged Care consultation
The department undertook a consultation process between February and March 2021 to provide an opportunity for members of the public, interested stakeholders, peak bodies and experts to consider the proposed staged approach to legalising mitochondrial donation in Australia. For further information visit mitochondrial donation on the department's website, where the consultation summary report is also available.
NHMRC expert advice and consultation
The NHMRC CEO statement on mitochondrial donation (5 June 2020) announced the outcomes of NHMRC's work on mitochondrial donation, undertaking in 2019 and 2020. It includes the release of the Expert Statement and Consultation Report.
Expert Working Committee Statement to the NHMRC CEO on the science of mitochondrial donation
The Mitochondrial Donation Expert Working Committee was established in 2019 to advise the NHMRC CEO on three scientific questions about mitochondrial donation arising from the Senate Inquiry. The Mitochondrial Donation Expert Working Committee Statement to the NHMRC CEO on the science of mitochondrial donation, March 2020 (Expert Statement) provides the Committee's advice on the science of mitochondrial donation and was formulated through a series of meetings, workshops, and out-of-session advice.
The Expert Statement makes it clear that there is a diversity of views among experts working in the field about whether the current risks and scientific unknowns are such that it would be appropriate at this time to consider mitochondrial donation for introduction into Australian clinical practice.
Community consultation on social and ethical issues
NHMRC sought the community's views on the ethical and social considerations of the possible introduction of mitochondrial donation into Australian clinical practice through a range of consultation activities undertaken in 2019. The Report on NHMRC's public consultation on the social and ethical issues raised by mitochondrial donation (Consultation Report) describes the multi-modal approach used to consult, describes how the consultation process successfully informed and engaged with a broad range of community members, and presents an analysis of the views of the Australian community on mitochondrial donation.
The Consultation Report outlines the resources that were developed to support the consultation and how the use of media activities successfully encouraged engagement from the general community. NHMRC's Mitochondrial Donation Issues Paper and a Mitochondrial Donation Public Consultation Video provided clear and concise information on this complex matter to support the community consultation process.
The major themes that emerged from the consultation were the rights and wellbeing of children, factors relating to egg donation and the donor and implementation considerations. The Consultation Report shows that there are social and ethical issues that must be taken into account in considering the introduction of mitochondrial donation in Australia. There is a range of opinions in the community, with a number of respondents being opposed to its introduction while others are supportive.
A Citizens' panel process was also used to capture the views and attitudes of the general community about the social and ethical issues of mitochondrial donation. The panel comprised ordinary citizens who engaged with mitochondrial donation experts and stakeholders to learn more about the scientific, ethical and social issues associated with mitochondrial donation, and developed a position statement. The Mitochondrial Donation Community Consultation Citizens' Panel Position Statement has been provided to NHMRC and included in the feedback delivered to the Australian Government in NHMRC's Consultation Report.
NHMRC hosted two webinars during the public consultation period.
Webinar – 19 November 2019
The following NHMRC webinar was held on Tuesday 19 November 2019:
Webinar – 30 October 2019
The following NHMRC webinar on mitochondrial donation was on Wednesday 30 October 2019:
Video - Overview of mitochondrial disease and mitochondrial donation
Watch NHMRC and experts give an overview of mitochondrial disease and mitochondrial donation.
Senate Inquiry and Government response
The Senate Community Affairs References Committee conducted an Inquiry into the Science of Mitochondrial Donation and Related Matters. The Inquiry examined the impact of mitochondrial disease on Australian families and the healthcare sector, the safety and efficacy of existing donation techniques, and ethical considerations.
The Inquiry Report, which was handed down on 27 June 2018, made 4 recommendations (summarised):
- Undertake public consultation on the possible introduction of mitochondrial donation into Australian clinical practice.
- Obtain expert advice through NHMRC about key scientific questions relating to mitochondrial donation.
- Engage with state and territory governments on the findings of the Inquiry.
- Seek access for Australian patients to mitochondrial donation procedures in the United Kingdom.
The Australian Government response to the Inquiry Report was tabled on 20 February 2019. The Government asked NHMRC to deliver on the first two recommendations.