- Community consultation on the social and ethical issues associated with mitochondrial donation
- Senate Inquiry and Government Response
- Mitochondrial Donation Expert Working Committee
NHMRC CEO Statement on Mitochondrial Donation
The NHMRC CEO statement on mitochondrial donation announces the outcomes of NHMRC’s work on mitochondrial donation, including the release of the Expert Statement and Consultation Report.
The Mitochondrial Donation Expert Working Committee Statement to the NHMRC CEO on the science of mitochondrial donation (Expert Statement)
The Mitochondrial Donation Expert Working Committee Statement to the NHMRC CEO on the science of mitochondrial donation (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 purpose of the Expert Statement is to advise the NHMRC CEO on the three scientific questions about mitochondrial donation arising from the Senate Inquiry.
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.
Outcomes of Community Consultation
NHMRC sought the community’s views on the ethical and social considerations of the possible introduction of mitochondrial donation into Australian clinical practice. The Report on NHMRC’s public consultation on the social and ethical issues raised by mitochondrial donation (Consultation Report) describes the multi-modal approach to the consultation, demonstrates how the consultation 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. It also describes the resources that were developed to support the consultation and the successful use of media activities to encourage engagement from the general community.
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 mitochondrial donation, and that there is a range of opinions in the community, with a number of respondents being opposed to its introduction while others are supportive.
Public Consultation: September to November 2019
NHMRC conducted a public process to obtain views from the Australian community on the social and ethical issues associated with mitochondrial donation.
To support this process NHMRC used a multi-modal approach to capture a range of community views. This included a call for submissions on specific issues through the NHMRC public consultation portal.
To support the consultation process, NHMRC developed the Mitochondrial Donation Issues Paper, which provided clear and concise information on this complex matter.
NHMRC Online Services submission portal
The NHMRC Online Services submission portal allowed people to submit their written views about the ethical and social issues associated with the possible introduction of mitochondrial donation into Australian clinical practice.
The portal closed on 29 November 2019.
Mitochondrial Donation Issues Paper
The Mitochondrial Donation Issues Paper was the main document supporting public consultation. This paper provides information about mitochondrial donation and the related ethical and social issues. The paper also includes ten questions that were intended to prompt your thinking and assist you to develop your own views about whether you support the introduction of mitochondrial donation into clinical practice in Australia. The ten questions formed the basis of written submissions.
A citizens’ panel process was 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. You can view both webinars below.
The following NHMRC webinar was held on Tuesday 19 November at 7.00 - 8.00pm AEDT:
The following NHMRC webinar on mitochondrial donation was on Wednesday 30 October 2019 at 10.00 - 11.00am AEDT:
Public forums in Sydney and Melbourne allowed interested people to engage in person with the consultation process. These forums were informative and provided opportunities for people to discuss the scientific, social and ethical issues of mitochondrial donation with experts.
Key stakeholders participated in a roundtable discussion of the social and ethical issues to ensure that NHMRC fully understands their views. This platform allowed key stakeholders to present and discuss their perspectives. Stakeholders included representatives from relevant academic, scientific, industry and consumer organisations, peak bodies, and government.
Watch NHMRC and experts drawn mostly from the Mitochondrial Donation Expert Working Committee give an overview of mitochondrial disease and mitochondrial donation.
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 four 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, and
- 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.