The CEO of the National Health and Medical Research Council (NHMRC) established the ART Guidelines (Mito) Working Committee under section 39 of the National Health and Medical Research Council Act 1992.
With a limited scope, members with a range of expertise and perspectives would assist with identifying changes that may be required to the 2017 ART Guidelines to accommodate the ethical introduction of mitochondrial donation, and to propose revised or new guideline text for consideration by the Australian Health Ethics Committee (AHEC).
Terms of reference
The ART Guidelines (Mito) Review Working Committee (the Committee) will provide advice to the Chief Executive Officer of the NHMRC, and to the 2021–2024 Australian Health Ethics Committee (AHEC), on amendments that may be required to the Ethical guidelines on the use of assisted reproductive technology (ART) in clinical practice and research, 2017 (2017 ART Guidelines) as a result of the introduction of mitochondrial donation in Australia.
Taking account of legislative changes enacted by the Mitochondrial Donation Law Reform (Maeve's Law) Act 2022, any subsequent legislation and/or subordinate regulations, the Committee will:
- identify any section of the 2017 ART Guidelines that would prohibit or limit the introduction of mitochondrial donation in Australia
- develop and advise on new or revised guidance to enable the intent of legislative change to take effect in an ethically appropriate way
- advise on any other relevant issues as requested by the NHMRC Chief Executive Officer or the NHMRC Australian Health Ethics Committee.
The Committee is established under section 39 of the National Health and Medical Research Council Act 1992. Its membership is comprised of a Chair, and members with expertise in health ethics and mitochondrial donation and consumer representatives.
Committee members
Chair,
Associate Professor
Bernadette
Richards
Expertise in health law, including mitochondrial donation law reform and regulation.
Adjunct Associate Professor Bernadette Richards is a bioethics and health law expert at the Australian Centre for Health Law Research, Queensland University of Technology and the Adelaide Law School, Adelaide University. She is also a Senior Research Scientist at Singapore-ETH Centre, a joint initiative of the Swiss Federal Institute of Technology and Singaporean National Research Foundation. She is President of the Australasian Association of Bioethics and Health Law and is on the editorial board of the Medical Law Review.
An active researcher with a focus on ethics and medical law, Associate Professor Richards has completed major projects on organ donation, consent to treatment and legal issues around innovative surgery. Additional areas of focus include health data governance, issues around Advance Care Planning, access to innovative treatment, the role of Artificial Intelligence in diagnosis and the role of medical device representatives in surgery.
Associate Professor Richards has been a member of NHMRC's Embryo Research Licensing Committee since 2015 and has served as the member in common with the Australian Health Ethics Committee since 2018. She is a member of the NHMRC Dietary Guidelines Governance Committee and Chaired NHMRC's Mitochondrial Donation Expert Working Committee (2019–20).
Declaration
- Director of the Journal of Bioethical Inquiry Pty
- Provision of fee for service and pro bono consultancies on behalf of institutional affiliations and self
- Recipient of, and likely future applicant to, NHMRC for research funding, including salary support for self and/or team
- Institutional employment and professional affiliations as noted in profile.
Ms
Mia
Bell
Member, with expertise in consumer issues relating to mitochondrial disease
Ms Mia Bell is a Senior Advisor in Government Relations at ReturnToWorkSA (RTWSA) with previous legal experience managing the Law Society of South Australia's Professional Standards Scheme.
Ms Bell is a valued Member and former Chair of the Australian Mito Foundation's Mito Community Advisory Panel. She co-hosts the Parents with Mito Kids Support Network and has previous experience supporting the United Mitochondrial Disease Foundation’s Adult Advisory Committee (2018–2020).
Declaration
- Institutional employment and professional board membership activities as noted in profile
- Ongoing advocacy and support work with Mito Foundation.
Professor
Jackie
Leach Scully
Member, with expertise in the ethical considerations relating to mitochondrial donation
Professor Jackie Leach Scully is Professor of Bioethics and Director of Disability Innovation Institute at the University of New South Wales.
With a background in molecular biology and further training in neurobiology, Professor Scully is a bioethicist specialising in disability and feminist bioethics. Her overarching research interest follows the socio-ethical response of various cohorts to technological innovation, with a particular focus on people with disability and other marginalised communities.
Professor Scully currently serves on NHMRC's Australian Health Ethics Committee as a member with an understanding of concerns faced by people with disabilities. She also serves on a range of Clinical Ethics Committees across Sydney and chairs NSW Health's Ethics Advisory Panel. She has served in a number of bioethics advisory capacities and is former Executive Director of the Policy Ethics and Life Sciences Research Centre at Newcastle University, United Kingdom.
Declaration
- Member, International Association of Feminist Approaches to Bioethics Advisory Board (ex officio)
- Potential provision of fee for service and pro bono consultancies on behalf of institutional affiliations and self
- Recipient of, and likely future applicant to, NHMRC for research funding, including salary support for self and/or team
- Institutional employment and professional affiliations as noted in profile.
Ms
Cal
Volks
Member, with expertise in consumer issues relating to ART consent and counselling
Ms Cal Volks is a PhD candidate at La Trobe University Law School and a previous Director of the University of Cape Town HIV/AIDS, Inclusivity and Change Unit, in Cape Town, South Africa.
A social science researcher and counsellor, Ms Volks works with the Victorian Assisted Reproductive Treatment Authority providing supervision to the donor-linking counsellors and is a Senior Infertility Counsellor in private practice. She has been working in the field of reproductive and sexual health, particularly around assisted reproduction, and HIV/AIDS for the past 27 years as a researcher, public educator, manager and counsellor.
Ms Volks has served as member of NHMRC's Embryo Research Licensing Committee since 2021 and is a member of the executive Committee of the Australian and New Zealand Infertility Counsellors Association.
Ms Volks is currently completing her PhD at La Trobe University Law School, where she is investigating the experiences of Australian egg and sperm donors who have had early contact with their donor conceived children (under the age of 18) and/or recipient parents.
Declaration
- Provision of fee for service and pro bono consultancies on behalf of institutional affiliations and self
- Recipient of, and likely future applicant to, NHMRC for research funding, including salary support for self and/or team
- Institutional employment and professional affiliations as noted in profile.
Professor
Steve
Robson
Member, with expertise in assisted reproductive technology (ART)
Professor Steve Robson is a specialist obstetrician and gynaecologist with a special interest in reproductive medicine and surgery. He is a Visiting Medical Officer for ACT Health and a Professor of Obstetrics and Gynaecology at the Australian National University Medical School.
Professor Robson's research interests include reproductive surgery, assisted reproduction, surgical economics, and general gynaecological surgery. He also has an interest in the effects of genomics on society and is involved in research on genetic screening.
He is the founder and Chair of the charity, Send Hope Not Flowers delivering practical solutions and support to improve the survival of mothers following childbirth in the developing world. Having previously worked as a Royal Australian Navy Medical Officer and rural GP in Central Queensland, Professor Robson brings his collective experiences and insights to the work of NHMRC's Embryo Research Licensing Committee of which he has been a member since 2018.
Professor Robson is the President of the Australian Medical Association (AMA) and a past-President of the Royal Australian and New Zealand College of Obstetricians and Gynaecologists. He has served on the Gene Technology Ethics and Community Consultative Committee and is a member of Council of the Australian Medical Council.
He is a Fellow of the Colleges of Obstetrics and Gynaecology of Australia, the United Kingdom and the United States of America.
Declaration
- Director of Stephen Robson Medical Pty Ltd, Australian Medical Association (ACT) Limited, and Send Hope Pty Ltd
- Provision of clinical IVF services through Genea Pty Ltd on a fee for service basis, no shares held in Genea or other ownership benefits received
- Provision of fee for service and pro bono consultancies on behalf of institutional affiliations and self
- Institutional employment and professional affiliations as noted in profile