The NHMRC CEO established the Mitochondrial Donation Expert Working Committee under section 39 of the National Health and Medical Research Council Act 1992. Members were been selected to provide a range of expertise and perspectives on the issues identified in the Australian Government’s response to the Senate Community Affairs References Committee inquiry report. The work of this Committee has now concluded.

You can read more about this topic on the Mitochondrial donation information page.

Committee Activities

The Committee held its final meeting on 3 March 2020. Discussion focussed on:

  • Finalising advice to NHMRC to inform the Committee’s expert statement to the NHMRC CEO.

The Committee held its fourth meeting on 19 December 2019. Discussion focussed on:

  • Providing further advice to NHMRC to inform the Committee’s expert statement to the NHMRC CEO.

The Committee held its third meeting on 29 October 2019. Discussion focussed on:

  • Updates on public consultation activities including the citizens’ panel, and 
  • Providing further advice to NHMRC to inform the Committee’s expert statement to the NHMRC CEO.

The Committee held its second meeting on 30 August 2019. Discussion focussed on:

  • Public consultation activities and how to ensure strong community engagement and that views from a diversity of stakeholders are obtained; and
  • The Mitochondrial Donation Issues Paper and finalisation of the questions underpinning public consultation on mitochondrial donation.

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.

Committee Membership

Chair,
Associate Professor
Bernadette
Richards

Chair with broad expertise in relevant areas. Member-in-common with the NHMRC Australian Health Ethics Committee and Embryo Research Licensing Committee.

Declaration

  • A/Professor of Law at the University of Adelaide (Medical Law, Bioethics and Tort Law)
  • Research Funding (medical law and bioethics): NHMRC Partnership Grant and Australian Research Council Linkage Grant

Dr
Clare
Boothroyd

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

Declaration

Roles:

  • Membership board Fertility Society of Australia.
  • Oral examination coordinator Certificate of Reproductive Endocrinology and Infertility Royal Australian and New Zealand College of Obstetricians and Gynaecologists
  • Membership and Vice President of Asia Pacific Initiative on Reproduction
  • Membership of steering committee for educational meeting for obstetricians and gynaecologists
  • Membership Board True Relationships and Reproductive Health.

Pecuniary interests:

  • Ownership of unit offering assisted reproductive technologies
  • Minority shareholding of unit offering assisted reproductive technology treatments
  • Payment for recruitment of patients to research trial

Support for travel / expenses:

  • Reimbursement of travel expenses to attend face to face annual meeting in Sydney

Consultancy:

  • Remuneration for chairing a meeting to general practitioners on Menopausal HRT and Utrogestan and Prometrium.

Professor
Sheryl
de Lacey

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

Declaration

Presentations:

  • Numerous presentations on health science, ART and ethics.

Relevant Publications:

  • Blakely B, Hendl T, de Lacey S (In Press). The Australia experience: Cultural & political factors shaping human embryo assessment during IVF.
  • In Sills S & Palermo G (Eds) Human embryos and preimplantation genetic technologies: Ethical, social and public policy aspects. Elsevier US.
  • Newson, A.J., de Lacey, S., Dowling, D.K., Murray, S., Sue, C.M., Thorburn, D.R., Gillam, L. Degeling, C. (2019). "Public attitudes towards novel reproductive technologies: a citizens’ jury on mitochondrial donation." Human Reproduction, accepted 8 February 2019.
  • Nicol D, Eckstein L, Morrison M, Sherkow J, Otlowski M, Whitton T, Bubela T, Burdon K, Chalmers D, Chan S, Charlesworth S, Critchley C, Crossley M, de Lacey S, Dickinson J, Hewitt A, Kamens J, Kazuto K, Kleiderman E, Kodama S, Liddicoat J, Mackey D, Newson A, Nielson J, Wagner J and McWhirter R (2017) Key challenges in bringing CRISPR-mediated somatic cell therapy into the clinic. Genome Medicine 9: 85
  • de Lacey S (2017) Death in the clinic: Women’s perceptions and experiences of discarding supernumerary IVF embryos. Sociology of Health & illness v39 (3): 397-411.

Recipient of the following funding to conduct social research into assisted reproductive technologies and the disposition of frozen, excess human embryos:

  • Flinders University Research Grant (2017) CIA
  • Sydney University and the Australian Mitochondrial Disease Foundation (2017) CIB
  • Flinders Fertility Research Grant (2015) CIB
  • Flinders Fertility Research Grant (2014)

Roles:

  • Professor of Nursing (Adjunct), College of Nursing & Health Sciences
  • Member of NHMRC Assisted Reproductive Technology Review Committee (2013)

Consultancy:

  • NHMRC Adequacy of Supply of Excess ART embryos for research (2002)

Reverend
Kevin
McGovern

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

Declaration

  • Minister of Religion in the Catholic Church.
  • Director of the Caroline Chisholm Centre for Health Ethics from August 2007 to July 2016.

Roles:

  • Former Member of the NHMRC’s Assisted Reproductive Technology (ART) Review Committee
  • Former Member of 2011 Independent Legislative Review Committee for Prohibition of Human Cloning for Reproduction Act 2002 and Research Involving Human Embryos Act 2002 (the Heerey Review).

Relevant Publications:

  • Many articles on bioethics, mostly in the Chisholm Health Ethics Bulletin.

The Hon
Judi
Moylan
AO

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

Declaration

Roles:

  • Co-chair of the National Diabetes Strategy Advisory Group - Implementation Reference Group
  • Government affairs adviser for Diabetes Australia.
  • Member of Advisory Board ACNA (a Subsidiary of Silver Chain Group)
     

Mr
Sean
Murray

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

Declaration

Roles:

  • CEO of the Mito Foundation which advocates to legalise mitochondrial donation in Australia
  • Extended family with mitochondrial disease for whom mitochondrial donation could be relevant should it become available in Australia
     

Professor
Ainsley
Newson

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

Declaration

Recipient of the following funding to conduct research into public attitudes towards mitochondrial donation:

  • University of Sydney Industry and Community Engagement Award (2016)
  • Mito Foundation grant

Relevant Publications:

  • Numerous publications in scholarly journals and popular media.

Presentations:

  • Guest presenter at three Mito Foundation events in 2015 and 2017.

Support for travel / expenses:

  • Meals and domestic flight costs provided by Mito Foundation to present at events.

Expert testimony:

  • Written submission and invited expert witness at 2018 Senate inquiry on mitochondrial donation.

Professor
Dianne
Nicol

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

Declaration

Roles:

  • Professor of Law at the University of Tasmania
  • Director of the Centre for Law and Genetics at the University of Tasmania
  • Member of a number of local and national committees in the areas of law, health and genomics.

Recipient of the following funding:

  • Grant from IP Australia (2017)
  • Currently chief investigator on two Australian Research Council Discovery Grant Projects.
     

Professor
John
Rasko
AO

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

Declaration

Pecuniary interests:

  • Investment in traded stocks, including biomedical companies.

Roles:

  • Chair of The Gene Technology Technical Advisory Committee (GTTAC)
  • Australian Government Office of the Gene Technology Regulator (OGTR)
  • Employment at Department of Cell and Molecular Therapies
  • President of the International Society for Cellular Therapy
     

Professor
Justin
St. John

A member with expertise in mitochondrial genetics and assisted reproductive technologies.

Declaration

Recipient of the following funding:

  • OvaScience Inc.

Roles:

  • Shareholder and director or Winston Foundation.
  • Founder, shareholder and director of MitoGen Pty.

Support for travel / expenses:

  • From MSD to present in Spain (2017) and China (2018 and 2019).
  • From OvaScience to present in Finland (2016)

Patents:

  • Inventor on patent associated with somatic cell nuclear transfer (Cybrid/NT. The University of Birmingham US 7,547,549 B2 - now reassigned to Monash University). No pecuniary benefit.

Professor
Patrick
Tam

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

Declaration

Recipient of the following funding to conduct research in mammalian development and functional genomics of rare genetic diseases:

  • NHMRC Project grant (2017-2019) CIA
  • NHMRC Research Fellowship (2016-2020) CIA
  • ARC Discovery Project grant (2019-2021) Principal Investigator
  • NSW Government-Paediatrio: Paediatrics Precision Medicine Program (2019-2022) Program 1 Principal Investigator
  • Centre of Research Excellence Grant: CIA

Relevant Publications:

  • Pera M, de Wert G, Dandorp W, Lovell-Badge R, Mummery CL, Munsie M and Tam PPL (2015) What if stem cells turn into embryo in a dish? Nature Methods 12: 917-919.
  • Tam PPL (2016) Human stem cell can differentiate in post-implantation mouse embryo. Cell Stem Cell 18(1):3-4
  • Rossant J. and Tam PPL (2017) New insights into early human development: Lessons for stem cell derivation and differentiation. Cell Stem Cell 5:18-28 
  • Rossant J and Tam PPL (2018) Exploring early human development. Science 360 (6393) 1075-1076
     

Professor
David
Thorburn

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

Declaration

  • Employed at Murdoch Children's Research Institute

Recipient of the following funding to conduct research on mitochondrial diseases:

  • NHMRC Principal Research Fellowship (2019-2023)
  • NHMRC Project Grant (2019-2021)
  • NHMRC Project Grant (2017-2019)
  • NHMRC Project Grant (2016-2020)
  • NHMRC Targeted Call for Research in Genomics (2016-2020)
  • US Dept of Defense CDMRP Investigator-Initiated Research Award (2019-2021)
  • Mito Foundation Translational Research Grant (2018-2021)
  • Mito Foundation Booster Grant (2018-2019)

Relevant Publications:

  • Rius R, Cowley MJ, Riley L, Puttick C, Thorburn DR and Christodoulou J (2019) Biparental Inheritance of Mitochondrial DNA in Humans is not a Common Phenomenon. Genet. Med. (in press, accepted May 24, 2019)
  • Newson AJ, de Lacey S, Dowling DK, Murray S, Sue CM, Thorburn DR, Gillam L and Degeling C (2019) Public attitudes towards novel reproductive technologies: a citizens’ jury on mitochondrial donation. Hum Reprod 34:751-757
  • Gorman GS, Chinnery PF, DiMauro S, Hirano M, Koga Y, McFarland R, Suomalainen A, Thorburn DR, Zeviani M and Turnbull DM (2016) Mitochondrial diseases. Nature Reviews Disease Primers 2: 16080
  • Thorburn DR and Rahman S (2014) Mitochondrial DNA-Associated Leigh Syndrome and NARP. In: Pagon RA, Adam MP, Ardinger HH, et al., editors. GeneReviews [Internet]. Seattle (WA): University of Washington, Seattle; 1993-2015

Roles:

  • Honorary role with Victorian Clinical Genetics Services
  • Board and advisory roles for the Mito Foundation
  • Peer reviewer for Lily Foundation in the UK
  • Advisor and peer reviewer for UK Human Fertilisation & Embryology Authority.
     

Mitochondrial Donation Citizens’ Panel Subcommittee

An MDEWC subcommittee was established to provide advice on the citizens' panel process. Subcommittee membership was Associate Professor Bernadette Richards (Chair), Professor Sheryl de Lacey, Associate Professor Ainsley Newson, Professor Dianne Nicol and Dr Chris Degeling (The University of Wollongong).

Dr Degeling was appointed to the subcommittee for his expertise in deliberative processes. He disclosed that he currently receives NHMRC funding for his research activities.