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Our team

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GOVERNANCE STRUCTURE

Our governance structure has been established to support development and delivery of the study’s reproductive genetic carrier screening program, and associated research program.

Mackenzie’s Mission is delivered through Australian Genomics, a national network of over 80 organisations, including Australia’s clinical and diagnostic genetics services, major research and academic institutions, and Federal and State Departments of Health. The Australian Genomics research program and clinical flagship projects aim to build the evidence to inform the integration of genomic medicine into mainstream healthcare.

Prof Martin Delatycki
Co-Lead
Mackenzie’s Mission

Clinical Geneticist & Clinical Director
Victorian Clinical Genetics Services

Director, Bruce Lefroy Centre
Murdoch Children’s Research Institute 

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Prof Edwin Kirk
Co-Lead
Mackenzie’s Mission

Clinical Geneticist
Centre for Clinical Genetics, Sydney Children’s Hospital

Genetic Pathologist
NSW Health Pathology

Women’s and Children’s Health
University of New South Wales

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Prof Nigel Laing
Co-Lead
Mackenzie’s Mission

Laboratory Head, Neurogenetic Diseases Group
Harry Perkins Institute of Medical Research

Centre for Medical Research
The University of Western Australia

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COORDINATION

Jade Caruana
Program Coordinator
Australian Genomics

Sarah Jelenich
Project Assistant
Murdoch Children’s Research Institute

Samantha Edwards
Project Officer
Harry Perkins Institute of Medical Research

Sarah Righetti
Research Administrator
The University of New South Wales

CLINICAL & RESEARCH

Dr Alison Archibald
Genetic Counselling Research Lead
Victorian Clinical Genetics Services

Anaita Kanga-Parabia
Associate Genetic Counsellor
Victorian Clinical Genetics Services

Kirsten Boggs
Associate Genetic Counsellor
Sydney Children’s Hospitals Network

Samantha Edwards
Genetic Counsellor
Harry Perkins Institute of Medical Research

Jillian Kennedy
Associate Genetic Counsellor
Genetic Services of Western Australia

Camron Ebzery
Senior Genetic Counsellor
Genetic Health Queensland

Dr Belinda McClaren
Research Stream: Psychosocial & Epidemiology
Specialist Project Officer
Murdoch Children’s Research Institute

Emily King
Research Stream: Psychosocial & Epidemiology
Project Assistant
Murdoch Children’s Research Institute

A/Prof Kristine Barlow-Stewart
Research Stream: Psychosocial & Epidemiology
Senior Research Genetic Counsellor
The University of New South Wales

Lucinda Freeman
Research Stream: Psychosocial & Epidemiology
Senior Research Genetic Counsellor
The University of New South Wales

Dr Stephanie Best
Research Stream: Implementation Science
Postdoctoral Research Fellow
Macquarie University & Murdoch Children’s Research Institute

Dr Janet Long
Research Stream: Implementation Science
Postdoctoral Research Fellow
Macquarie University

Tahlia Theodorou
Research Stream: Implementation Science
Research Assistant
Macquarie University

Dr Lisa Dive
Research Stream: Bioethics
Postdoctoral Research Fellow
The University of Sydney

A/Prof Martin Downes
Research Stream: Health Economics
Associate Professor
Griffith University

Emma Wang
Research Stream: Health Economics
Research Assistant
Griffith University

LABORATORY

Dr Justine Marum
Group Leader, Reproductive Genetic Carrier Screening
Victorian Clinical Genetics Services

Alisha Monaco
Medical Scientist
Victorian Clinical Genetics Services

Corrina Cliffe
Senior Hospital Scientist
NSW Health Pathology

Bianca Rodrigues
Technical Assistant
NSW Health Pathology

Natalia Smietanka
Technical Assistant
NSW Health Pathology

A/Prof Richard Allcock
Medical Scientist in Charge
PathWest Laboratory Medicine

Grace Androga
Medical Scientist
PathWest Laboratory Medicine

Yuki Xie
Technical Assistant
PathWest Laboratory Medicine

NATIONAL STEERING COMMITTEE

The National Steering Committee is responsible for providing strategic guidance and overall management of the study. The Committee is comprised of the Co-Leads of the study, the Lead and Manager of Australian Genomics, and the mother of Mackenzie, who the study is named after. The Committee meet quarterly to review the progress of the study.

COMMITTEE MEMBERS

Prof Nigel Laing (CHAIR)
Co-Lead
Mackenzie’s Mission

Tiffany Boughtwood
Manager
Australian Genomics

Rachael Casella
Patient advocate and parent of Mackenzie

Prof Martin Delatycki
Co-Lead
Mackenzie’s Mission

Prof Edwin Kirk
Co-Lead
Mackenzie’s Mission

Prof Kathryn North
Lead
Australian Genomics

INTERNATIONAL ADVISORY GROUP

The International Advisory Group comprises six international experts across the disciplines of reproductive genetic carrier screening, genomic medicine and bioethics. The Group work with the Co-Leads of Mackenzie’s Mission to advise on the strategic direction, research activities and operations of the study.

COMMITTEE MEMBERS

Prof Wayne Grody (CHAIR)
The University of California, Los Angeles
United States of America

Prof Fowzan Alkuraya (DEPUTY CHAIR)
King Faisal Specialist Hospital & Research Centre
Saudi Arabia

Prof Martina Cornel
VU University Medical Centre Amsterdam
The Netherlands

Prof Anneke Lucassen
The University of Southampton
United Kingdom

Prof Irene van Langen
The University of Groningen
The Netherlands

Prof Joel Zlotogora
The Hebrew University of Jerusalem
Israel

COMMUNITY ADVISORY GROUP

The Community Advisory Group comprises the well-established Australian Genomics Community Advisory Group, with the addition of two Mackenzie’s Mission representatives. The Group brings together experienced patient advocates who advise on the design and language of participant consent forms and surveys, digital health and data management strategy, and ethical, legal and social analyses of genomics.

COMMITTEE MEMBERS

Richard Vines (CHAIR)
Rare Cancers Australia

Jessica Bean
Patient advocate

John Cannings OAM
Patient advocate

Rachael Casella (MACKENZIE’S MISSION REPRESENTATIVE)
Patient advocate and parent of Mackenzie

Danielle D’Souza (MACKENZIE’S MISSION REPRESENTATIVE)
Community representative

Prof Martin Delatycki
Victorian Clinical Genetics Services

Alison McEwan
University of Technology Sydney

Sean Murray
Mito Foundation

Kathy Wells
Breast Cancer Network Australia

RESEARCH COMMITTEE

The Research Committee oversees the Mackenzie’s Mission research program, which includes four key streams: Psychosocial and Epidemiology, Implementation Science, Bioethics and Health Economics. The Committee is comprised of leads from each of these research streams.

COMMITTEE MEMBERS

Prof Martin Delatycki (CHAIR)
Lead: Psychosocial & Epidemiology Research Stream
Murdoch Children’s Research Institute

Prof Jeffrey Braithwaite
Lead: Implementation Science Research Stream
Macquarie University

Prof Jane Halliday
Murdoch Children’s Research Institute

Prof Edwin Kirk
The University of New South Wales

Prof Nigel Laing
Harry Perkins Institute of Medical Research

A/Prof Ainsley Newson
Lead: Bioethics Research Stream
The University of Sydney

Prof Paul Scuffham
Lead: Health Economics Research Stream
Griffith University

CLINICAL COMMITTEE

The Clinical Committee works with the study’s genetic counsellors to develop participant consent forms, monitor recruitment of healthcare providers and participants, and oversee the clinical management of participants who have genetic carrier screening through the study. The Committee is made up of clinical leads from each state and territory.

COMMITTEE MEMBERS

Prof Edwin Kirk (CO-CHAIR)
Sydney Children’s Hospital

Prof Martin Delatycki (CO-CHAIR)
Victorian Clinical Genetics Services

Dr Michelle Farrar
Sydney Children’s Hospital

Prof Nigel Laing
Harry Perkins Institute of Medical Research

Dr Jan Liebelt
South Australian Clinical Genetics Service

Prof Julie McGaughran
Genetic Health Queensland

A/Prof Nicholas Pachter
Genetic Services of Western Australia

Prof Stephen Robson
Canberra Hospital

A/Prof Tony Roscioli
Sydney Children’s Hospital

Lindsay Tuer
Royal Darwin Hospital

Dr Mathew Wallis
Tasmanian Clinical Genetics Service

LABORATORY COMMITTEE

The Laboratory Committee is responsible for the development and delivery of the genetic testing required for the study’s reproductive genetic carrier screening program. The Committee is comprised of laboratory heads, genetic pathologists, medical scientists and technical assistants at the three laboratories providing genetic testing for the study: NSW Health Pathology (NSW), PathWest Laboratory Medicine (WA) and Victorian Clinical Genetics Services (VIC).

COMMITTEE MEMBERS

Prof Edwin Kirk (CHAIR)
NSW Health Pathology

A/Prof Richard Allcock
PathWest Laboratory Medicine

Grace Androga
PathWest Laboratory Medicine

Dr Alison Archibald
Victorian Clinical Genetics Services

Dr John Beilby
PathWest Laboratory Medicine

Dr Damien Bruno
Victorian Clinical Genetics Services

Dr Michael Buckley
NSW Health Pathology

Corrina Cliffe
NSW Health Pathology

Dr Mark Davis
PathWest Laboratory Medicine

Dr Stefanie Eggers
Murdoch Children’s Research Institute

Prof Nigel Laing
Harry Perkins Institute of Medical Research

Dr Sebastian Lunke
Victorian Clinical Genetics Services

Dr Justine Marum
Victorian Clinical Genetics Services

Alisha Monaco
Victorian Clinical Genetics Services

Dr Mark Pertile
Victorian Clinical Genetics Services

Bianca Rodrigues
NSW Health Pathology

Dr Samantha Sundercombe
Liverpool Hospital

Yuki Xie
PathWest Laboratory Medicine

RECRUITMENT COMMITTEE

The Recruitment Committee works with the study’s Operational Team to develop strategies and plans for the recruitment of healthcare providers and participants into the study. The Committee is made up of genetic healthcare providers with expertise in recruitment for genetic carrier screening studies and programs.

COMMITTEE MEMBERS

Prof Martin Delatycki (CHAIR)
Victorian Clinical Genetics Services

Dr Alison Archibald
Victorian Clinical Genetics Services

A/Prof Kristine Barlow-Stewart
The University of New South Wales

Prof Leslie Burnett
Kinghorn Centre for Clinical Genomics, Garvan Institute of Medical Research

Prof Jon Emery
The University of Melbourne

Prof Edwin Kirk
Sydney Children’s Hospital

Prof Nigel Laing
Harry Perkins Institute of Medical Research

A/Prof Nicholas Pachter
Genetic Services of Western Australia

Prof Sue Walker
Mercy Hospital for Women

EDUCATION & ENGAGEMENT COMMITTEE

The Education and Engagement Committee works with the study’s genetic counsellors to develop education materials for healthcare providers and participants who take part in the study. Committee members include medical educators, general practitioners, clinical geneticists, genetic counsellors and a community representative.

COMMITTEE MEMBERS

A/Prof Kristine Barlow-Stewart (CHAIR)
The University of New South Wales

Dr Alison Archibald
Victorian Clinical Genetics Services

A/Prof Clara Gaff
Melbourne Genomics

Prof Edwin Kirk
Sydney Children’s Hospital

Prof Jane Halliday
Murdoch Children’s Research Institute

Prof Jon Emery
The University of Melbourne

Kate Dunlop
Centre for Genetics Education, NSW Health

Lucinda Freeman
The University of New South Wales

Dr Lucy Gilkes
The University of Western Australia

Prof Martin Delatycki
Victorian Clinical Genetics Services

Prof Nigel Laing
Harry Perkins Institute of Medical Research

Rachael Casella
Patient advocate and parent of Mackenzie

Dr Simon Morgan
GP Training Valley to Coast

GENE SELECTION COMMITTEE

The Gene Selection Committee carried out a comprehensive evaluation of genes relevant to reproductive genetic carrier screening, and developed the list of genes and genetic conditions to be screened through the study. The Committee is comprised of clinical geneticists, a genetic pathologist, a medical scientist, a genetic counsellor, an obstetrician, an ethicist and a parent of a child with a genetic condition.

COMMITTEE MEMBERS

Prof Edwin Kirk (CHAIR)
NSW Health Pathology

Dr Alison Archibald
Victorian Clinical Genetics Services

Rachael Casella
Patient advocate and parent of Mackenzie

Dr Mark Davis
PathWest Laboratory Medicine

Prof Martin Delatycki
Victorian Clinical Genetics Services

Dr Tristan Hardy
Women’s and Children’s Hospital

Prof Nigel Laing
Harry Perkins Institute of Medical Research

Prof Julie McGaughran
Genetic Health Queensland

A/Prof Ainsley Newson
The University of Sydney