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Translational Genomics and Community-Driven Research in Australia
Fiona Russo1, Keri Finlay2, Isabella Sherburn3
1Senior fellow at the Centre for Health Research at the University of Southern Queensland.
Ethics & Human Research
|September 27, 2025
Summary
Community involvement is crucial for ethical human translational research. Australian Genomics developed practical guidelines for engaging communities in genomic research, ensuring effective translation and impactful health outcomes.
Area of Science:
- Genomic Research
- Translational Science
- Community Engagement
Background:
- International recognition of community involvement in human translational research for ethical and impactful health outcomes.
- Growing trend in Australia to mandate community involvement in research.
- Gap in practical guidance for community engagement in genomic research.
Purpose of the Study:
- To address the need for practical guidance in community engagement for genomic research in Australia.
- To develop comprehensive guidelines for effective and meaningful community involvement.
- To support the translation of genomic research into clinical practice.
Main Methods:
- Involve Australia (IA) initiative coordinated by Australian Genomics.
- Development of guidelines informed by surveys, interviews, and public consultations with impacted individuals.
- Incorporation of community perspectives to ensure practical applicability.
Main Results:
- Development of the IA Guidelines providing practical information for genomic researchers.
- Guidelines emphasize relationship building, clear expectations, valuing contributions, evaluation, and reporting.
- Guidelines cover effective and meaningful involvement for research translation and outcomes.
Conclusions:
- The IA Guidelines offer a crucial step forward for community involvement in genomic research.
- Endorsement by research and patient organizations highlights support for these resources.
- Sets a precedent for community engagement in other health and medical research areas.
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