From misconceptions to empowerment: assessing health and genetic literacy on thalassemia among Tunisian secondary school students

Thalassemia, a prevalent hereditary hemoglobinopathy in Tunisia, poses significant public health challenges due to limited awareness, hindering prevention and management. This study evaluates health and genetic literacy among Tunisian secondary school students to inform targeted educational interventions. We designed a questionnaire based on the Common-Sense Model of Self Regulation (CSM), a framework for understanding health threat responses, and Nutbeam’s health literacy framework, encompassing functional, interactive, and critical literacy across care, prevention, and health promotion. A cross-sectional study was conducted with 356 students (28.1% male, 71.9% female, aged 17–20) in public secondary schools. Participants reported their knowledge, affective, and behavioral attitudes toward thalassemia and its prevention. Findings reveal low health literacy, with only 35% recognizing thalassemia’s hereditary nature and 46% mistakenly believing it is contagious. Significant differences were observed by study specialty (p < 0.05), with scientific students outperforming literary students. Over half of respondents failed to understand genetic transmission risks, and 33% saw no need to inform partners of carrier status. However, most expressed positive attitudes toward blood donation and supporting affected children. Early health education is critical for thalassemia prevention. This study, the first to assess Tunisian adolescents’ thalassemia literacy, highlights the need for curriculum reforms to enhance genetic and health literacy, empowering informed reproductive decisions and reducing disease burden through primary prevention.