“It was up to me to be curious”: perceptions and experiences of students with intellectual disability on genetics and health education

People with intellectual disability want to learn more about their health and genetics. They want to be empowered with the knowledge and skills to make informed health and genetic healthcare choices. Little is known about what high school students with intellectual disability learn about health, genetics or genetic healthcare. To address this gap, we conducted an inclusive qualitative research study in Australia. Fourteen Australian current and recently graduated students with intellectual disability participated in semi-structured interviews. Inductive content analysis revealed four key themes: (i) Science, health and genetics education, (ii) Health rights, (iii) Education rights, (iv) Recommendations for improving genetic and health literacy. Students with intellectual disability reported they were not taught about genetics and health, making healthcare choices, and/or making life decisions at school. They felt these disadvantages and were disempowered in becoming informed healthcare consumers. They recommended that teachers should be supported with resources to deliver inclusive, person-centred and respectful lessons that inform decision-making about genetics, health and healthcare choices. Future research should focus on how best to upskill teachers to support students with intellectual disability for their future health choices in a respectful, supportive, student-centred and strengths-based way. This will help prepare young people with intellectual disability to navigate the healthcare system and be empowered partners in their own healthcare. The growth of such skills has been suggested as critical in inequities in healthcare access for people with intellectual disability, as well as improving healthcare experiences and outcomes.