Genomics in the Community Project

Our Genomics in the Community Project is a collaboration between Australian Genomics and Patient Advocacy Groups that aims to make sure Australians have access to reliable and up-to-date information about genomics and genomic testing.

Earlier this year, an analysis was undertaken to determine what genomic resources are available world-wide for patients and to assess the quality and content of these resources.

The analysis found 138 relevant resources, including 124 written, three stand-alone graphic and 11 video resources. The resources were evaluated based on content, language and readability, structure and organisation, design, and neutrality and balance. The working group also engaged patient advocacy organisations to determine which of the available resources are most appropriate and useful for patients and the Australian community.

The analysis found that while few materials were identified that focus on genomics and genomic testing; there were many resources about genetics and genetic testing. Resources 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 are now available on this website.