GeneEQUAL

Dr Emma Palmer (PhD, FRACP, MBBS, BA (HONS I OXON), DIP. RANZCOG, DIP. TROP. MED. & HYG. (RCP), MRCPCH, AFHEA)

Clinical Geneticist, Sydney Children’s Hospitals Network

Clinical Lecturer, UNSW Sydney, School of Medicine and Health

E: elizabeth.palmer@unsw.edu.au

Dr Palmer has more than 20 years’ medical experience and has worked in Clinical Genetics for over 10 years. She is a clinical academic and clinical geneticist at Sydney Children’s Hospital Network (SCHN), Randwick, and a lecturer at the University of New South Wales.

She has an excellent track record in clinical research with over 60 journal articles and two book chapters. She leads international research and has delineated six novel genetic causes of intellectual disability, published in world-leading medical journals such as Cell, American Journal of Human Genetics and Molecular Psychiatry. She leads a 7-person interdisciplinary team CoGENES, investigating how best to support patients, families and clinicians of children with rare genomic conditions, and is coordinating principal investigator of Gene2Care. She leads state-wide, national, and international research programs, and is scientific advisor to international intellectual disability patient advocacy groups. She is an expert for the World Health Organisation regarding strengthening health services for people with rare genomic conditions.

Dr Palmer has extensive teaching experience at both the pre- and post-graduate level and has developed educational resources on genomics for clinicians and patients as part of national and international collaborations. She convenes the UNSW practical medical genomics short course which has been designed to provide medical practitioners with the pecialized knowledge, skills and confidence to successfully integrate genetics and genomics into their daily practice. She also leads RArEST, a national program of education and research to improve the model of care for people with rare disease, and a program of research across Sydney Children’s Hospital Network (40 investigators) with national and international collaborators, that aims to improve the patient journey for individuals with genomic conditions.

Find out more information about Dr Palmer

Professor Iva Strnadová (Doc., PhDr., Mgr., PhD)

Professor in Special Education and Disability Studies

UNSW Sydney, School of Education

E: i.strnadova@unsw.edu.au

Professor Strnadová has a longstanding research expertise in the well-being of people with intellectual disability; life transitions of people with disability (particularly intellectual disability and autism); parents with intellectual disability; and inclusive research methods. She has an excellent track record in disability studies and special education research with 19 books, 64 book chapters, 96 journal articles, which have been cited over 2,300 times (Google Scholar, h-index 25).

Professor Strnadová’s work in Australia and beyond focuses on giving voice to people with intellectual disability who have been traditionally marginalised. Professor Strnadová is currently leading a world-wide cutting-edge trial in collaboration with the NSW Department of Education. In this co-designed and co-produced process, an alternative to Tell Them From Me (a state-wide survey for students) for students with moderate and high support needs has been developed and trialled in 24 schools, with a plan to be rolled out across the whole state.

Professor Strnadová is a world-recognised leader in inclusive research, in which people with intellectual disability have a role as researchers. She is a passionate advocate for co-design and co-production in matters relevant to people with intellectual disability and autism. She led the development of the UNSW Disability Innovation Institute’s Co-production Guidelines for Research with People with Disability, which were launched in August 2020, and Doing Research Inclusively: Co-production in Action guidelines launched in May 2022.

Professor Iva Strnadová has strong community engagement. She is the Vice-President of the NSW chapter of the Australian Association of Special Education (AASE). She is also on the Executive Board of Self Advocacy Sydney, an organisation run by people with intellectual disability.

Find out more information about Professor Strnadová

Jackie Boyle (RN, BHSc, Grad Cert Child & Family Health, MBioethics)

Clinical Nurse Consultant and Genetic Counsellor

Genetics of Learning Disability Service, NSW Health

E: jackie.boyle@health.nsw.gov.au

Jackie is a genetic counsellor and Clinical Nurse Consultant working for the NSW Genetics of Learning Disability (GOLD) service in Australia. She has seventeen years of clinical experience working within the specialty of inherited intellectual disability. As a member of many collaborative research teams during this time, Jackie has also gained a range of experience in different research settings.

Professor Jackie Leach Scully (PhD)

Professor in Bioethics and Director of the Disability Innovation Institute

UNSW Sydney

E: jackie.leach.scully@unsw.edu.au

Professor Scully is an internationally recognised bioethicist focusing on ethical issues in disability and genomics. With a background in molecular genetic research prior to her move into biomedical regulation and bioethics, she also has several years’ experience of public engagement and producing health information for a variety of audiences.

The author of Disability Bioethics: Moral Bodies, Moral Difference (2008), Professor Scully is widely acknowledged as a pioneer in the understanding of ethical issues in healthcare from the perspective of people with disability. Her past 20 years of empirical bioethics research uses a variety of methods of stakeholder consultation and engagement, and the development of methods of public deliberation to examine challenging and sensitive ethical issues in healthcare. Her research has also had a focus on the experiences of marginalised and hard to reach communities, including people with disability.

Professor Scully’s current funded research is in an ARC-funded Centre of Excellence in Automated Decision Making and Society, focusing on ADM in disability services, and two ARC-funded Discovery projects looking at the experiences of people with disability with prenatal genetic screening and with epigenetic counselling. She therefore has a wide network of relevant academic and community contacts for dissemination and impact.

Professor Scully has wide experience in providing guidance to national healthcare policies, e.g., in the United Kingdom on the Oversight Committee for the development of public consultation on mitochondrial replacement treatment, Nuffield Council Report on Genome Editing and Human Reproduction (2018), and NHS England Genomic Medicine Service working parties on data donation and on newborn genomic screening. She is currently Chair of NSW Health’s Health Ethics Panel and a member of the Australian Health Ethics Committee. She is a Fellow of the Royal Society of Arts and Academy of Social Sciences (UK), of the Royal Society of New South Wales, and of the Hastings Center for Bioethics.

Julie Loblinzk

Self Advocate

Adjunct Lecturer, UNSW Sydney, School of Education

E: julie@sasinc.com.au

Julie Loblinzk is best positioned to be included as a co-researcher in this project, as she is a Self Advocacy Coordinator and has worked for Self Advocacy Sydney Inc. for the past 20+ years. She has been involved with the service in various paid staff and Board roles and has well established links with people with intellectual disability and their organisations across NSW. Her skills are critical to the effective involvement people with intellectual disability as key members of the research team to ensure that the voice of people with intellectual disability is included from the start, thereby building credibility in the research and ongoing trust among the community.

Julie Loblinzk is also an Adjunct Lecturer at the School of Education, UNSW and an experienced researcher, with three journal articles in peer-reviewed journals with high impact factors.

Joanne Danker (JD) (PhD)

Senior Lecturer in Special Education

UNSW Sydney, School of Education

E: j.danker@unsw.edu.au

Dr Danker is a lecturer in special education at UNSW, Sydney. Her research aims to enable the voices of people with developmental disabilities through the use of accessible methods. She is also a committee member of the NSW chapter of the Australian Association of Special Education.

Find out more about Dr Danker

Bronwyn Terrill

Manager in Education and Communication

Garvan Institute of Medical Research

E: b.terrill@garvan.org.au

Bronwyn is an educator and researcher focusing on DNA and genetics. She works at the Garvan Institute of Medical Research, UNSW Sydney and Australian Genomics. She is passionate about engaging different audiences with genetic research and genomic medicine and has done this for many years through writing, exhibitions, educational activities and online media. She collaborates on research into: what makes people ‘literate’ in genetics; genomics education in healthcare, universities and schools; and community engagement with genomics.

 Find out more information about Bronwyn

Skie Sarfaraz

New Leaders and Peer Support (LAPS) Program Officer (Blacktown)

Self Advocacy Sydney

E: skie@sasinc.com.au

Skie is a self-advocate who brings her lived experience of having intellectual disability and experience of supporting other people with disability. Skie is an early career Indigenous researcher, who is well connected to various networks of families who have a child with intellectual disability and/or on the autism spectrum, some of which are from the culturally and linguistically diverse backgrounds.

Karen-Maia Jackaman (Ba.BEd., MComm)

Project Coordinator in Disability Strategy Team

NSW Department of Education

E: karen-maia.jackaman@det.nsw.edu.au

Karen-Maia is currently the Project Coordinator within the NSW Department of Education’s Disability Strategy. Karen-Maia has extensive experience as a Head Teacher Wellbeing and Learning Support in NSW public schools, and over twenty years experience teaching and supporting students with disability. She is completing her Masters of Special Education at UNSW, with a minor thesis in genomic education for students with intellectual disability.

Michelle Tso (BA BEd(Sec)(Hons))

PhD candidate; Research Assistant

UNSW Sydney, School of Education

E: m.tso@unsw.edu.au

Michelle is a PhD student at the University of New South Wales. Her PhD thesis is on the peer interactions of high school students girls on the autism spectrum. She is supervised by Professor Iva Strnadová, Dr Joanne Danker and Dr Sue O’Neill. Her research interests are in inclusive and special education, and especially in supporting students on the autism spectrum to have increased well-being in the school environment and beyond. She is a research assistant on projects at the University of New South Wales (School of Education, and the Disability Innovation Institute).

Find out more information about Michelle

Manjekah Dunn (MD, BMed Honours)

Master’s in Research candidate; Research Assistant

UNSW Sydney, School of Education

E: manjekah.dunn@unsw.edu.au

Manjekah is a junior doctor at Hornsby Hospital with an interest in clinical genetics and patient advocacy. She is currently conducting a Research Masters project at UNSW in the Faculty of Medicine examining informed consent and the co-design of Easy Read resources about genetic testing for people with an intellectual disability. She also previously completed an Honours degree in paediatric endocrinology, examining prevention of Type 1 Diabetes in children using autologous umbilical cord stem cells. Manjekah is the Masters Postgraduate Student Representative in the UNSW School of Clinical Medicine Board, representing and advocating for UNSW research students in the School of Clinical Medicine. She is currently completing the Sydney Child Health Program and recently finished the UNSW Practical Medical Genomics Short Course. Manjekah also has an interest in teaching and the biological sciences, with over seven years' experience teaching students at a secondary and tertiary level.

Sierra Classen (BA (hons), MTeach)

Master's in Special Education candidate; Research Assistant

UNSW Sydney, School of Education

E: s.classen@student.unsw.edu.au

Sierra is a Masters student and a research assistant in special and inclusive education at the University of NSW. She currently works as a primary school teacher with the NSW Department of Education. Sierra is passionate about supporting children with a disability and Aboriginal and Torres Strait Islander children and families to know their rights and have a strong voice in their own educational journeys.