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, undertaken to map the availability of genomic information materials world-wide and to assess the quality and content of these information materials.
The analysis found that while few materials 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.
These new and adapted materials will soon be available on a new website for the community, genomicsinfo.org.au. More to come!
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