Community Collaboration in Public Health Genetic Literacy: Co-Designing Educational Resources for Equitable Genomics Research and Practice

Abstract

IntroductionUnequal representation in genetic and genomic research is due to various factors including historically inequitable and unjust institutional research practices, potential mistrust of biomedical research among underrepresented populations, and lack of access to or awareness of research opportunities. Facilitating sustainable dialogue between diverse communities and genetic researchers can cultivate trusting, bidirectional relationships, potentially encouraging greater participation in research. Herein, we describe the co-creation of public health educational materials and dissemination plans. MethodsWe describe co-creation by genetics clinicians, researchers, and community members of Genetics and Genomics Educational modules. These modules are aimed at enhancing genetic literacy with a goal to facilitate informed decision-making regarding genetic research and health services. We used Designing for Dissemination and Sustainability, which is grounded in Dissemination and Implementation science, and the Fit to Context process framework to guide the process. This approach ensures the public health context and diverse audience for the modules are considered throughout their development. Additionally, it ensures that broader goals such as dissemination, equity, and sustainability are integrated from the outset, fostering long-term impact and effectiveness. ConclusionThis article offers an evidence-based template for adoption or adaptation by other community-engaged groups, aimed at bolstering equity and sustainability in the development of health care interventions, with an emphasis on accessible public health literacy. The co-creation of both materials and dissemination plans between researchers and community members may improve the cultural appropriateness and relevance of public health genetics campaigns. Ongoing research is needed to assess the impact on receptiveness and participation.