Launched: Involve Australia’s Guidelines for Community Involvement in Genomic Research


On 6 December 2023, the Involve Australia project, coordinated by Australian Genomics, launched Guidelines for Community Involvement in Genomic Research (Guidelines). Involve Australia has engaged with the public to develop community involvement guidelines for genomic researchers.

The Guidelines were developed in partnership with patient support and advocacy groups, Indigenous community members, patients and carers, interested members of the public, genomic researchers and clinicians. RVA is also pleased to see Involve Australia’s plan for evaluating implementation of the Guidelines over the next couple of years.

Rare Voices Australia’s Contribution

As the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) provided detailed feedback into the draft Guidelines, including the need for a summarised version for quick reference by time poor researchers. The final version of the Guidelines has been formally endorsed through RVA’s Endorsement Criteria.

From RVA’s perspective, involving patients and communities in the development and execution of health and medical research:

  • Increases the relevance of research in addressing community needs;
  • Supports identification of real-world research priorities;
  • Increases awareness, support and public confidence in research; and
  • Improves translation of new knowledge into clinical practice.

How to Use the Guidelines for Community Involvement in Genomic Research

RVA encourages all genomic researchers to refer to the Guidelines to involve community members effectively and meaningfully in their research. Many of the Guiding Questions for Researchers in the supporting document for the Guidelines will also be useful to researchers in other fields.

The work of the Involve Australia project directly aligns with the following areas of the Australian Government’s National Strategic Action Plan for Rare Diseases:

  • Critical enablers: The need for high-quality, comprehensive collection, and effective use, of rare disease data; and multi-stakeholder involvement and engagement
  • Priority 3.3 under Pillar 3, Research and Data: Ensure research into rare diseases is collaborative and person-centred.

For more information and to download a copy of the Guidelines or the quick guide to involving community in research, please visit the Australian Genomics website.

Download the Guidelines

Download the Quick Guide