Genomics in the Community
Our Genomics in the Community Project, is a joint initiative of Australian Genomics and Australian patient advocacy organisations to develop interesting and accessible information for the public on genomics and genomic testing.
Earlier this year, the project working group released the findings of a landscape analysis that was undertaken to map the availability of genomic information materials world-wide and to assess the quality and content of these information materials.
The mapping activity found 138 relevant information materials, including 124 written, three stand-alone graphic and 11 video materials. A framework for analysis was used to evaluate the content, language and readability, structure and organisation, design, and neutrality and balance of these materials. The working group also engaged patient advocacy organisations to determine which of the available resources are most appropriate and useful for the community.
The analysis found that while few materials were identified that focus on genomics and genomic testing; there were many materials about genetics and genetic testing, some of which could be adapted for a genomic context. Materials relating to genomics and implications for insurance and data privacy were lacking and likely differ across countries. These were identified as topics that could be addressed in new materials for the Australian context,
Many of these existing materials, as well as new materials will be made available on a new website genomicsinfo.org.au, coming later in 2018.
Thank you to the following patient advocacy organisations for their contribution to this work:
- Australasian Gastro-Intestinal Trials Group
- Australian Mitochondrial Disease Foundation
- Breast Cancer Network Australia
- Cystic Fibrosis Community Care
- Cystic Fibrosis NSW
- Genetic and Rare Disease Network
- Kidney Health Australia
- Leukaemia Foundation
- Leukodystrophy Australia
- Myeloma Australia
- Rare Voices Australia
- Rare Cancers Australia
- Syndromes Without A Name Australia