Jackaman Karen-Maia, Strnadová Iva, Willow Sierra Angelina, Loblinzk Refalo Julie, Scully Jackie Leach, Palmer Elizabeth Emma, Terrill Bronwyn
School of Education, UNSW Sydney, Sydney, NSW, Australia.
Disability Innovation Institute, UNSW Sydney, Sydney, NSW, Australia.
Eur J Hum Genet. 2025 Jun 6. doi: 10.1038/s41431-025-01865-2.
Genetics is a rapidly evolving field with the potential to achieve improved health outcomes through precision medicine. People with intellectual disability have asked to know more about genetic conditions that they may have, but require education to build their genetic literacy, thereby empowering them to make informed healthcare decisions. Key to this is ensuring students with intellectual disability can access and participate in genetics education at school. Despite integration of genetics into curriculum, little is known about whether teachers are equipped to engage students with intellectual disability with this content. To explore this issue, fifteen teachers who teach genetic content to students with intellectual disability participated in semi-structured interviews or in a focus group. The analysis revealed three interconnected themes addressing genetics education for students with intellectual disability. These themes encompassed effective pedagogical approaches and curriculum adaptations, the necessity for targeted professional development with appropriate resources, and the importance of fostering comprehensive genetic literacy across the entire school community to build capacity among students, staff, and families. These findings have widespread implications for supporting teachers to develop genetic literacy in students with intellectual disability. A key recommendation is to create professional learning and a suite of accessible, multimodal, online resources for students with intellectual disability, their teachers, and the broader school community.
遗传学是一个快速发展的领域,有潜力通过精准医学实现更好的健康结果。智障人士要求更多地了解他们可能患有的遗传疾病,但需要接受教育以提高他们的遗传知识素养,从而使他们能够做出明智的医疗保健决策。关键在于确保智障学生能够在学校接受并参与遗传学教育。尽管遗传学已纳入课程,但对于教师是否有能力让智障学生参与这方面的内容,人们知之甚少。为探讨这一问题,15名向智障学生讲授遗传学内容的教师参与了半结构化访谈或焦点小组讨论。分析揭示了针对智障学生遗传学教育的三个相互关联的主题。这些主题包括有效的教学方法和课程调整、提供适当资源进行有针对性的专业发展的必要性,以及在整个学校社区培养全面的遗传知识素养以增强学生、教职员工和家庭能力的重要性。这些发现对于支持教师培养智障学生的遗传知识素养具有广泛影响。一项关键建议是为智障学生、他们的教师以及更广泛的学校社区创建专业学习资源和一套可获取的多模式在线资源。