G002 Improving community understanding of genetic testing and counselling through collaborative efforts with genetic services

<h3>Objective</h3> This study aims to enhance community awareness and understanding of genetic testing and counselling, particularly within the Huntington’s disease (HD) community, through strategic partnerships with genetic services. <h3>Background</h3> Huntington’s disease (HD) is a genetic neurodegenerative disorder caused by a mutation in the HTT gene, leading to progressive decline in cognitive, motor, and psychiatric functions. Offspring of affected individuals have a 50% risk of inheriting the mutation, creating significant emotional and psychological challenges regarding genetic testing. While testing provides clarity, it also raises complex issues affecting family planning, career choices, and financial futures. Genetic counselling is essential to navigate these complexities, yet misconceptions and fear often prevent individuals from seeking these services, hindering informed decision-making and proactive health management. <h3>Methods/Techniques</h3> An observational study was conducted to address the need for accessible genetic services and reduce ambiguity within the HD community. Partnerships with genetic service providers were established to enrich the content on the Huntington’s Victoria website and create comprehensive informational fact sheets. A focus group provided insights to ensure content alignment with community needs. Pre- and post-improvement data from intake calls were analysed to gauge the efficacy of these enhancements. <h3>Results</h3> Website content improvements and collaborative efforts with genetic services led to a significant increase in intake calls related to genetic testing, indicating successful community outreach and better information accessibility. Analysis showed a notable increase in comprehension of genetic testing and counselling among the HD community. Initially, many callers were confused about the process and implications of genetic testing. Post-improvements, a significant portion reported feeling more confident and informed about their options. Focus group feedback highlighted the value of updated content and fact sheets in aiding understanding and decision-making. <h3>Conclusion</h3> Collaborative efforts to enhance website content and partner with genetic services have substantially improved community engagement and understanding of genetic testing and counselling within the HD community. This model effectively addresses ambiguities and enhances clarity, promoting informed decision-making. This approach could be replicated in other regions to improve genetic health literacy and support for affected communities.