Background
Rapid advances in cancer genomics have the potential to risk widening existing inequities. Australia’s first National Framework for Genomics in Cancer Control, (February 2025) highlights the need for co-designed resources with communities and consumers to raise awareness of, and address concerns about, genomic testing and genomics-informed care.
Aims
To develop and share tailored, culturally safe, and accessible genomic health literacy resources so people with, or at risk of, inherited cancer can more confidently understand their options, participate in personalised prevention and risk‑reduction strategies, and make informed decisions that support improved cancer outcomes.
Methods
Together with insights from a national consumer survey and focus groups with priority populations, 26 community members were recruited to be interviewed. Interviews identified nine key themes to guide the development of videos and written resources. Community members were then invited, with consent, to share their experiences through filmed and/or written interviews. All final videos and resources were reviewed by contributors to ensure the content accurately reflected their experiences and were relevant to the needs of the intended audience.
Results
The project delivered nine educational resources and ten lived experience stories in accessible formats including articles, videos, and downloadable materials. Content reflects the topics community members identified as most important - family communication, cultural perspectives on genetic testing, men’s inherited cancer risk, fertility and reproductive choices, sexuality and relationships after surgery, managing menopause, supporting body image, mental health, and navigating supportive care.
Conclusions
Together, these activities ensured the resources were shaped directly by community insight, grounded in lived experience, and were responsive to the real-world needs of people navigating inherited cancer risk. This work has successfully supported implementation of the National Framework for Genomics in Cancer Control and strengthened equitable access to genomics-informed care.