Ethics & Human Research
Translational Genomics and Community-Driven Research in Australia
ABSTRACT The need for community involvement in human translational research has gained international recognition, with a growing consensus on its critical role in ensuring ethical and impactful health outcomes. In Australia, several bodies are beginning to mandate community involvement in research, reflecting this global trend. However, there remains a notable gap in practical guidance on effectively engaging communities, particularly in the emerging field of genomic research. To address this, Australian Genomics, a national collaboration supporting the translation of genomic research into clinical practice, coordinated an initiative called Involve Australia (IA). IA has developed comprehensive guidelines, together with and informed by the needs and perspectives of those directly impacted by genomic research, through surveys, interviews, and public consultations. The IA Guidelines provide practical information for genomic researchers on involving community members effectively and meaningfully in projects to ensure effective research translation, emphasizing the importance of building relationships, setting clear expectations, valuing community contributions, evaluating and reporting on the community involvement process, and translation of research outcomes. The IA Guidelines have been endorsed by various research and patient organizations, demonstrating the growing support for resources in this area. The development and implementation of these guidelines represent a crucial step forward in promoting community involvement in genomic research, setting a precedent for other areas of health and medical research to follow.
