Genetics Education & Health Research

As genomic technologies continue to expand, the impact this will have on individuals, families, health professionals and the wider community has educational, ethical and broader social implications. The Genetics Education and Health Research team explores and evaluates the provision and impact of genomic technologies and genetic services, as well as contributing to the development of educational programs. The research aims to promote understanding of genetics and genomics, and inform evidence-based practice, among families, health professionals and the community.

The group combines experience in genetics education, ethics and genetic counselling with mixed methods approaches, and a focus on qualitative research. This unique blend of expertise has led to the group becoming one of the world leaders in research of the clinical and social implications of genomics.

Group Leaders: 
Dr Jan Hodgson
Role: 
Project Manager/Research Officer
Dr Melissa Martyn
Role: 
Research Officer
Dr Belinda McClaren
Role: 
Senior Project Officer
Dr Amy Nisselle
Role: 
Specialist Project Officer
Chriselle Hickerton
Role: 
Research Assistant
Katrina Sharpe
Role: 
Research Student (Master of Genetic Counselling)
Kristy West
Role: 
Research Student (Master of Genetic Counselling)
Rigan Tytherleigh
Role: 
Research Student (Master of Biomedical Science)
Mark Adams
Role: 
Casual Research Assistant
Dr Melody Menezes
Role: 
Honorary Fellow
Dr Erin Turbitt
Role: 
Honorary Fellow
Dr Alice Ames
Role: 
Honorary Fellow
Dr Jean Paul
Role: 
Honorary Fellow
Fiona Cunningham
Role: 
Honorary Fellow

Prenatal testing: a longitudinal study: the PeTALS project
Prenatal testing is a routine part of pregnancy. In the event that a foetal abnormality such as Down syndrome is diagnosed, women are generally offered information and support so they can decide whether to continue with the pregnancy. Little is known about how women in Australia experience this process. This Australian Research Council (ARC)-funded study aims to investigate women’s needs at this time and identify the support currently available. Data collection includes in-depth interviews and measures of anxiety, depression and relationship bonds at six weeks, six to nine months and two years post diagnosis. Initial results found many women reported their partners were often quite unsupported. Partners have now been included in the study. Recruitment and data analysis is ongoing and the study findings will be used to develop a robust counselling intervention that can provide appropriate support for all couples who receive a prenatal diagnosis.

Australians’ expectations of personal genomics: the GeniOz project
Personal genomics refers to the information obtained from analysing a person’s genome – their entire genetic make-up – and how that information can be harnessed to understand, and promote, the health and wellbeing of an individual. Three main areas of interest relate to: (1) the Australian public’s perceptions and expectations of personal genomics; (2) whether population screening in early childhood should be expanded to include more genomic tests, and how that might occur; (3) how primary care practitioners are impacted by advances in genomics and genomic technologies and what models might be useful to integrate genomics into their practice to ensure they are fully supported to provide appropriate care for their patients. Feel free to complete the public survey at the GeniOz website.

Investigating current and future education and training needs of the Australian workforce in genomic medicine
This research will identify the needs of a range of health professionals to inform future training and educational resources for health professionals utilising genomic testing. The Australian Genomics Health Alliance (AGHA) is a national network working towards developing genomic medicine both within Australia, and in collaboration with international consortia. The AGHA comprises four programs, ranging from diagnostic and translational research networks, data repositories and ontologies, policy, through to education and ethics aspects of the workforce in genomic medicine, which is the focus of this project. By mapping current and planned education and training activities Australia-wide, assessing workforce needs, and developing an agile evaluation framework for future educational activities, this project will establish a national and coordinated approach to training and education to enable a workforce capable of delivering genomic medicine.

Collaborations: 

National

  • Dept of General Practice, The University of Melbourne
  • Health and Biomedical Informatics Centre, The University of Melbourne
  • Walter and Eliza Hall Institute of Medical Research
  • University of Sydney
  • Garvan Institute for Medical Research
  • Fragile X Alliance, Inc

International

  • Wellcome Trust Sanger Institute, UK
  • University of Ottawa, Canada