NHMRC is facilitating public consultation on mitochondrial donation. Further information is available including an Issues paper, dates of public meetings and videos below. 
Public Forum - Sydney, Monday 11 November 2019
Public Forum - Melbourne, Monday 18 November 2019

Following the Australian Government response to the Senate Community Affairs References Committee report of its Inquiry into the Science of Mitochondrial Donation and Related Matters, the NHMRC Chief Executive Officer was asked to facilitate a public consultation on the possible introduction of mitochondrial donation into Australian clinical practice. She was also asked to advise the Government on key scientific questions identified by the Senate Inquiry. To facilitate this, NHMRC established the Mitochondrial Donation Expert Working Committee to provide advice to the CEO on the legal, regulatory, scientific and ethical issues relating to mitochondrial donation.

Public Consultation: starts September to November 2019

NHMRC is conducting 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 is using a multi-modal approach to capture a range of community views. This includes a call for submissions on specific issues through the NHMRC public consultation portal.

To support the consultation process, NHMRC has developed the Mitochondrial Donation Issues Paper , which provides clear and concise information on this complex matter.  

Consultation Schedule 

Month Date Activity
September 2019 23 September NHMRC Online Services submissions portal open
23 September Mitochondrial Donation Issues Paper release
October 2019  19 & 20 October  Citizens' Panel 1 (Adelaide) 
30 October Release of the NHMRC Mitochondrial Donation Public Consultation video 
30 October  Targeted Roundtable for invited stakeholders (Canberra) 
30 October (10:00-11:00am AEDT) Webinar
November 2019 9 & 10 November  Citizens' Panel 2 (Brisbane) 
11 November  Public Forum (Sydney)
18 November  Public Forum (Melbourne)
  29 November NHMRC Online Services submission portal close

This schedule will be updated with information on the consultation process as it becomes available. To receive email updates on public consultation activities as they become available please contact NHMRC at mito.consultation@nhmrc.gov.au and ask to be added to our Mito Consultation mailing list. There is also a printable poster available to download if you would like to promote this consultation.  You can also follow us on Twitter @MitoNHMRC

Consultation Activities 

NHMRC Online Services submission portal

The NHMRC Online Services submission portal is the platform for submitting your written views about the ethical and social issues associated with the possible introduction of mitochondrial donation into Australian clinical practice.

The portal will be open until 5:00pm AEDT 29 November 2019.

Mitochondrial Donation Issues Paper

The Mitochondrial Donation Issues Paper is 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 to help 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 will form the basis of written submissions via the NHMRC Online Services submission portal.

Citizens’ Panel

A citizens’ panel process will be used to capture the views and attitudes of the general community about the social and ethical issues of mitochondrial donation. The panel will comprise ordinary citizens who will engage with mitochondrial donation experts and stakeholders to learn more about the scientific, ethical and social issues associated with mitochondrial donation, and will develop a position statement. This statement will be provided to NHMRC and included in the feedback delivered to the Australian Government.

Webinar

The NHMRC webinar on mitochondrial donation was on Wednesday 30 October 2019 at 10.00 - 11.00am AEDT. 

You can watch the webinar below.

 

If you missed the webinar and have a question, please write to mito.consultation@nhmrc.gov.au or follow us on twitter @MitoNHMRC.

Public Forums 

Public forums in Sydney and Melbourne will allow interested people to engage in person with the consultation process. These forums will be informative and will provide opportunities for people to discuss the scientific, social and ethical issues of mitochondrial donation with experts.

For more information about how to participate in the public forums, sign up to our mailing list at mito.consultation@nhmrc.gov.au or follow us on twitter @MitoNHMRC.

Targeted roundtable(s)

Key stakeholders will be invited to participate in a roundtable discussion of the social and ethical issues to ensure that NHMRC fully understands their views. This platform will allow key stakeholders to present and discuss their perspectives. Stakeholders will include representatives from relevant academic, scientific, industry and consumer organisations, peak bodies, and government.
 

NHMRC Mitochondrial Donation Public Consultation Video

Watch NHMRC and experts drawn mostly largely from the Mitochondrial Donation Expert Working Committee give an overview of mitochondrial disease, mitochondrial donation, and how you can get involved with NHMRC’s public consultation.

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 four recommendations (summarised): 

  1. Undertake public consultation on the possible introduction of mitochondrial donation into Australian clinical practice
  2. Obtain expert advice through NHMRC about key scientific questions relating to mitochondrial donation
  3. Engage with state and territory governments on the findings of the Inquiry, and
  4. 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 has asked NHMRC to deliver on the first two recommendations.  

Mitochondrial Donation Expert Working Committee 

The NHMRC CEO has 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 in the Australian Government’s response to the Senate Community Affairs References Committee inquiry report. 

Recent Activities

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
John
Christodoulou
AM

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

Declaration

Roles:

  • Chair of Genomic Medicine, Murdoch Children’s Research Institute and Department of Paediatrics, University of Melbourne.
  • Member of the Anavex Life Sciences Corp Data Safety Member Board for clinical trials being run Rett syndrome
  • Role in Australian Genomics Health Alliance working group developing an application to MSAC aimed at getting genomic testing for rare disorders funded through Federal means
  • Approved Pathology Provider for the Victorian Clinical Genetics Laboratory Services
  • Co-Head of the Brain and Mitochondrial Research Unit, Murdoch Children’s Research Institute
  • Member of the board and chair of the Scientific and Medical Advisory Committee for the Mito Foundation.
  • Scientific Advisory Committee Orphanet Australia
  • Membership of multiple learned societies.
  • Member – Australian ChILD Network (April 2015 – current)

Recipient of the following funding to conduct clinical trials research:

  • NHMRC – MRFF Scheme Research Grant (2018 - 2020) CIJ

Recipient of the following funding to conduct mitochondrial disorders research:

  • US DOD (2018 - 2021) CIB NHMRC Project Grant (2019 - 2021) CIB

Recipient of the following funding to conduct genomic research into rare disorders:

  • NHMRC Targeted Research Grant (2017 - 2021) CI
  • NHMRC CRE in Clinical Research (2016 - 2021) CIH 
  • Royal Children's Hospital Foundation (2018 - 2020) CIC

Recipient of the following funding to conduct Rett syndrome research: 

  • International Rett Syndrome Foundation (2019) CI 
  • The Financial Markets Foundation for Children (2019) CIB

Consultancy:

  • Rewriting the RACGP Genetics Handbook (now called Genomics Handbook) for the Royal Australasian College of General Practitioners

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
     

Associate 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.
     

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