When Thursday 27 June 2024, 1pm – 2pm (AEST)
Where Online.
Registration Registration is free and available here.
Join the Genomics Education Network Australasia (GENA) mid-year meet-up. Hear about genomics education projects underway in Australasia, find out about new tools and resources supporting genomics education and meet others working in the field.
GENA have education and genomics professionals discussing completed, current and developing projects in genomics education.
GENA welcome member updates in the last few minutes and can offer breakout rooms on zoom if people would like to continue the conversation.
Agenda
1pm – 1:05pm – Welcome
1:05pm – 1:30pm – Qualitative evaluation of an educational intervention to empower HREC members
Presented by A/Prof Aideen McInerney-Leo and Ella McGahan, followed by a short Q&A with the presenters.
An online educational resource, comprehensible by all HREC members, which includes education on genomics and the ethical, social, and legal implications of genomic research.
1:30pm – 1:55pm – How do we get health professionals to care about rare?
Presented by Dr Emma Palmer and Louise Healy, followed by a short Q&A with the presenters.
Learnings and codesigned educational resources from the national RArEST ( Rare Disease Awareness Education Support and Training) program.
1:55pm – 2pm – Network updates
About the speakers
A/Prof Aideen McInerney-Leo trained as a genetic counsellor in the UK before moving to the US to conduct clinical research at the National Institutes of Health and lecture at Johns Hopkins University. Her research group within the Fraser Institute at the University of Queensland, focuses on clinician and patient educational interventions to democratise access to genetic testing. As a member of the Metro South Human Research Ethics committee, she recognised that HREC members needed interventions to empower them to review genomics applications.
Ella McGahan is a research assistant who has recently completed her Honours at the University of Queensland Frazer Institute under the supervision of A/Prof Aideen McInerney-Leo. Her research has primarily focused on the development of an online resource to educate members of Human Research Ethics Committees (HRECs) on the theory and ethical considerations of genomics research, and empower them to more confidently review genomics ethics applications.
Dr Elizabeth (Emma) Palmer FRACP, PhD, is a senior clinical lecturer (Clinical Genetics) at the University of New South Wales and clinician at Sydney Children’s Hospitals Network. Her research aims to better understand the patient journey for those with rare conditions and to improve the equity and quality of genetic and rare condition health care, both in Australia and internationally.
Louise Healy is the Education and Advocacy Manager at Rare Voices. She has extensive experience working as a consultant and coach in the corporate sector and has post graduate qualifications in psychology. Her connection with rare conditions began when her first child was born with a rare metabolic disorder. Louise has been involved in rare disease support and advocacy for over 10 years and she is the current Vice President of the Metabolic Dietary Disorders Association (MDDA). She has led successful advocacy campaigns for access to medicines and support programs for people with rare disorders of protein metabolism. Louise is a previous RVA Board member, current member of the Queensland Genomics Community Advisory Board and a founding board member of the Global Association for PKU.
If you are interested in joining GENA, please click here.