NHMRC established the Mitochondrial Donation Expert Working Committee to provide advice to the NHMRC Chief Executive Officer on the legal, regulatory, scientific and ethical issues relating to mitochondrial donation.  

The Mitochondrial Donation Expert Working Committee (the Committee) has been established in response to the Senate Standing Committee on Community Affairs report of its 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 donation techniques and ethical considerations. The Inquiry Report, which was handed down on 27 June 2018, made four recommendations for the Government’s consideration (summarised): 

  1. Undertake public consultation
  2. Obtain expert advice through NHMRC about key scientific questions relating to mitochondrial donation
  3. Engage with state and territory governments, and
  4. Seek access for Australian patients to mitochondrial donation procedures in the United Kingdom.

The Government response to the Inquiry Report was tabled on 20 February 2019.  

Mitochondrial Donation Expert Working Committee 

NHMRC established the Committee under section 39 of the National Health and Medical Research Council Act 1992. Members have been selected to provide a range of expertise and perspectives on the issues identified by the Senate Standing Committee on Community Affairs report. 
Recent Activities
The Committee held its first meeting on 26 March 2019.  Discussion focussed on: 

  • The context for the Committee, including relevant background on the Senate Standing Committee on Community Affairs report of its Inquiry into the Science of Mitochondrial Donation and Related Matters and Government Response, and
  • Broad issues and potential questions to underpin a community consultation on mitochondrial donation.  

Terms of Reference

The Mitochondrial Donation Expert Working Committee (‘the Committee’) will provide advice to the NHMRC Chief Executive Officer on the legal, regulatory, scientific and ethical issues identified by the Senate Community Affairs References Committee Inquiry into: The Science of Mitochondrial Donation and Related Matters (‘the Inquiry’). 

The Committee will:

  1. advise on key questions to underpin community-wide consultation and increase community literacy on issues raised by mitochondrial donation to be delivered by April 2019
  2. consider relevant literature and advise on questions posed within Recommendation 2 of the Inquiry Report, specifically:
    1. whether mitochondrial donation is distinct from germline genetic modification
    2. is there any new information to indicate that research findings from the United Kingdom that the science of mitochondrial donation is safe for introduction into controlled clinical practice cannot be applied in an Australian context, and
    3. whether other approaches to inheriting mitochondrial disease should also be the focus of Australian research
  3. advise on any other relevant issues as requested by the NHMRC Chief Executive Officer.

 

Chair,
Associate Professor
Bernadette
Richards

Member with expertise in the genetics of mitochondrial disease and/or genetic modification.

Professor
David
Thorburn

Member with expertise in the genetics of mitochondrial disease and/or genetic modification.

Professor
John
Christodoulou
AM

Member with expertise in the genetics of mitochondrial disease and/or genetic modification.

Professor
Patrick
Tam

Member with expertise in the science of embryology and developmental biology.

The Hon
Judi
Moylan
AO

Member with expertise in Consumer health issues relating to mitochondrial disease.

Mr
Sean
Murray

Member with expertise in the consumer health issues relating to mitochondrial disease.

Dr
Clare
Boothroyd

Member with expertise in the clinical application of assisted reproductive technologies or gene therapies.

Professor
John
Rasko
AO

Member with expertise in the clinical application of assisted reproductive technologies or gene therapies, and their regulation.

Reverend
Kevin
McGovern

Member with expertise in the ethical and theological considerations relating to mitochondrial donation.

Professor
Sheryl
de Lacey

Member with expertise in the ethical and theological considerations relating to mitochondrial donation.

Associate Professor
Ainsley
Newson

Member with expertise in the ethical and theological considerations relating to mitochondrial donation.

Professor
Dianne
Nicol

Member with expertise in legislative and regulatory framework relevant to mitochondrial donation.

Declaration

NHMRC has well defined procedures for the formation of advisory committees which are based on obtaining the best experts available while ensuring conflicts of interest (real and perceived) are managed appropriately.