Mitochondrial Donation Expert Working Committee

• 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

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.

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)

• 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.

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)

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

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.

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.

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

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.

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

• 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.