About Us
The Centre for Genetics Education (CGE), based at Royal North Shore Hospital in Sydney, was established in 1989 as the education arm of the NSW Genetics Service of NSW Health. From 1989 -2000 it was known as the Genetics Education Program of NSW.
The team at the CGE is dedicated to providing current and relevant genetics information to individuals and family members affected by genetic conditions and the professionals who work with them. The CGE’s educational activities which include resource production, workshops and training programs all aim to bring genetics information to the widest audience possible with an aim of assisting in addressing the impact of the new and developing genetics technologies. Our research programs aim to provide an evidence base for these activities.
Who's Who at Genetics Education?
 Associate Professor Kristine Barlow-Stewart PhD Genetic Counsellor Director |
 Vicki Reid Office Manager |
 Mona Saleh Genetic Counsellor Deputy Director |
 Kate Dunlop Project Manager |
Eleni Mastrocostas |
Dominic Ross |
Janan Karatas |
Funding
The CGE is funded as a Statewide Service by NSW Health (Australia) through Northern Sydney Central Coast Area Health Service. We do not carry advertising and we do not accept any corporate sponsorship. Funding for special projects may however be obtained from competitive grants and contracts.
Policies and protocols for the development of our resources
The field of human genetics is rapidly developing, underscoring the need for regular updating of current information and production of new information on areas and issues as they arise.
The CGE’s core business is the development, production, dissemination and evaluation of print, audiovisual and on-line resources, authored and developed by our expert professional staff and peer-reviewed for accuracy by experts in clinical genetics and relevant medical specialties, laboratory genetics, and genetic counselling. Support groups are also partners in the production and dissemination of the information. Evaluations are regularly conducted with end-users to ensure that the information is appropriately targeted and is meeting their needs.
Fact Sheets:
Each Fact Sheet contains an edit history, noting their creation date and date of revision/updating. Some originated as early as 1993 and all are checked and revised accordingly at least every two years using a formal comprehensive protocol. New Fact Sheets are developed on topics when there is a demonstrated need ascertained by a formal needs assessment or from consistent requests directly to the Centre.
Pamphlets and booklets:
Printed and audio-visual resources produced for general information, teachers and students are also regularly updated following an established protocol. Each edition is dated.
Information Sheets:
Information Sheets are produced on request for particular genetic conditions for use primarily in the genetic counselling context by staff of the NSW Genetics Service or where a diagnosis has been confirmed. Areas covered include synonyms; general information; symptoms in more detail; cause/genetic basis where known; who is affected; brief general treatment information and resources including national and international support group contacts. The Information Sheets are updated if more than 6 months old prior to dissemination.
Projects undertaken in 2008
- Online Information Access Project: For any online health resources, it is important that information is highly relevant and easily accessible by the target audience. The aims of the CGE's 'Online Information Access Project' therefore, are to explore through focus groups ways in which genetics health information and pregnancy health information is accessed online. The chosen target groups for this research are women, since they have been identified as 'gatekeepers' of family health information. Women are also more likely to access health information online compared to men. The project is also designed to inform the development of the 'Pregnancy Preparation' component of the CGE's website, which outlines issues to consider prior to a pregnancy, including prevention and early detection of genetic conditions. Gayathri Parasivam and Eleni Mastrocostas.
Projects undertaken in 2007
Genetics and Health
- Family Health History campaign evaluation: A community media campaign to promote the importance of collecting family health history and telling their doctor was conducted in 2006 and is currently being evaluated.Kate Dunlop
- Psychological Impact of Preimplantation Genetic Diagnosis: The study aims to explore anxiety, depression, coping styles, maternal-fetal/infant attachment and health information needs of a sample of women who are currently undergoing Preimplantation Genetic Diagnosis (PGD) at a Sydney IVF clinic. This prospective study will follow-up and assess these women up to 5 times from their first appointment at the IVF clinic through to postpartum. Results will inform practice standards, policy and health professional training. This is a PhD project being undertaken by supported by the Faculty of Medicine, University of Sydney. Janan Karatas.
- Production of the 8th Edition of the Australasian Genetics Resource Book: This edition will provide information on and access to support groups for genetic conditions and genetics services across Australia and New Zealand. The 60 Fact Sheets on this website are also included. Gayathri Parasivam.
- Genetics in family medicine: the Australian Handbook for General Practitioners: A successful tender application in 2005 to Biotechnology Australia Commonwealth Government agency by the Genetics in Medicine Consortium – Kris Barlow-Stewart, Sylvia Metcalfe (Vic) and Jon Emery (WA) resulted in funding for the development of the Handbook, to be launched by BA late in 2007. Guided by a national Expert Advisory Group and informed by a national needs assessment and expert peer review, the Handbook contains 20 sections covering family history, testing and pregnancy, genetic services and testing and genetic conditions including familial cancer, fragile X and other causes of developmental delay, cardiovascular conditions and clotting and bleeding conditions. It is anticipated that the national approach of consultation, evaluation and revision will ensure that the Handbook becomes the ‘gold standard’ for genetics information for GPs and other health professionals throughout Australia. Kris Barlow-Stewart and Dominic Ross.
- Pregnancy Preparation: Every woman and her partner hopes for a health baby. One way to help achieve the best possible outcome for a pregnancy is to be as informed as possible before becoming pregnant. About half of all pregnancies are unplanned, however, and therefore it is not always possible to be prepared prior to a pregnancy. Maintaining good maternal health is important for the wellbeing of any future pregnancy.
The pregnancy preparation pages are simple to navigate. They consist of peer reviewed resources providing up-to-date information relating to lifestyle, and emotional and physical wellbeing of a woman and her partner, and how these may affect the outcome of a pregnancy. Gayathri Parasivam and Eleni Mastrocostas.
- Update of Huntington disease information kit: This information kit contains written material for individuals and families at risk of developing Huntington disease (HD). The pamphlets within this kit include information on the symptoms of HD, the genetic basis of HD, and the advantages and disadvantages of genetic testing for HD. A process of evaluation and expert consultation will be undertaken to inform the updating of the information material contained within the kit. Dominic Ross.
- Human genetics in the primary school curriculum: In 2006 an announcement was made that the NSW primary school’s science curriculum would be revised. This opportunity presented the chance to further extend students’ experience of science in the classroom from an early age so as to foster understanding and interest. The Centre for Genetics Education has therefore taken the initiative of developing a set of worksheets for primary science students based on teacher consultations and resources produced and evaluated by the Murdoch Children’s Research Institute. Human genetics is relevant to every individual and is the topic of not only news and current affairs programs but also films, television shows and games. It is therefore necessary for children to have the appropriate knowledge to be able to better understand these issues as they are raised in the environment around them. These worksheets are an excellent starting point for teachers to help them introduce the fundamental aspects of the exciting subject of human genetics to their students in a means which is simple, engaging and fun. The genetics in primary education package provided encompasses the specific, current observable indications of learning to be expected of students at each of Stages 1, 2 and 3 or K-2, 3-4 and 5-6 levels respectively.Kris Barlow-Stewart and Eleni Mastrocostas.
Cancer Genetics
- Familial Cancer Clinics education meetings: Monthly meetings are held for health professionals from Family Cancer Clinics and the Hereditary Cancer Register in NSW/ACT for information update, collaboration and professional development. Kate Dunlop.
- Cancer, Culture and Genetics: This project explores how people’s cultural background can shape their beliefs about genetics, kinship, inheritance and cancer. If we can better understand this, our next step will be to inform genetic professionals about how to provide more culturally competent genetic services to the Australian community. This project is being undertaken as a PhD project jointly with the Psychosocial Research Group at Prince of Wales Hospital, Sydney and is supported by a New South Wales Cancer Council, Strategic Research Partnership Grant. Mona Saleh.
- Update of the preventive mastectomy booklet: The preventative mastectomy booklet was recently identified via an extensive evaluation process as a key resource in the area of familial cancer and in need of revision. The new edition will include, amongst other updates, more detailed information on breast reconstruction. This project is being undertaken jointly with the Psychosocial Research Group at Prince of Wales Hospital, Sydney and is supported by a New South Wales Cancer Council, Strategic Research Partnership Grant (Principal Investigator Dr Bettina Meiser). Dominic Ross.
- Update of the risk management options for ovarian cancer booklets. The first of these booklets provides information on the risk management options for those women at increased risk for ovarian cancer. The second booklet is a decision aid designed to facilitate informed decision making to help tailor risk reducing strategies for these women. Evaluation and consultation has been undertaken to ensure that the most appropriate and up to date clinical information is contained within these booklets. This project is being undertaken jointly with the Psychosocial Research Group at Prince of Wales Hospital, Sydney and is supported by a New South Wales Cancer Council, Strategic Research Partnership Grant (Principal Investigator Dr Bettina Meiser). Dominic Ross.
Professional training and workshops
- Communication skills training (CST) evaluation: Evaluation of the impact of Communication Skills Training workshops on genetic counselling practice is being undertaken in partnership with the Medical Psychology Research Unit University of Sydney. Kate Dunlop.
- Workshops with the Association of Genetics Support of Australasia (AGSA): The CGE is committed to educating and supporting members of the community living with a genetic condition. In 2008, the Centre for Genetics Education aims to reach this community by participating in a series of information days for individuals and families with a specific condition. This seminar series is conducted by AGSA, a partner of CGE. The Centre's participation will involve presenting specific and general genetic counselling issues that may be encountered by families with a genetic condition of interest.
- Teaching Ethics in the Classroom. A lecture presenting practical and relevant ways of engaging high school students in the discussion of ethics and genetic technologies. Using specific sections of the syllabus to illustrate the importance of teaching ethics, this is presented as a part of the bi-annual Science Teachers Workshops run by the Children's Medical Research Institute (CMRI). Mona Saleh.
- Genetics and Health - An Update. A full day workshop presented to Disability liaison workers and carers of adults with a behavioural disability. The workshop presented the latest information on genetics and behavioural conditions. Interactive workshops explored the most efficient ways of gaining access to genetics services and information for both the professional and consumer. Presented at Interaction Disability Services, Castle Hill NSW. Mona Saleh.