Karen-Maia Jackaman, Iva Strnadová, Sierra Angelina Willow, Julie Loblinzk Refalo, Jackie Leach Scully, Elizabeth Emma Palmer, Bronwyn Terrill
{"title":"Developing genetic literacy in high school students with intellectual disability: Teachers' experiences and perspectives.","authors":"Karen-Maia Jackaman, Iva Strnadová, Sierra Angelina Willow, Julie Loblinzk Refalo, Jackie Leach Scully, Elizabeth Emma Palmer, Bronwyn Terrill","doi":"10.1038/s41431-025-01865-2","DOIUrl":null,"url":null,"abstract":"<p><p>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.</p>","PeriodicalId":12016,"journal":{"name":"European Journal of Human Genetics","volume":" ","pages":""},"PeriodicalIF":4.6000,"publicationDate":"2025-06-06","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"European Journal of Human Genetics","FirstCategoryId":"99","ListUrlMain":"https://doi.org/10.1038/s41431-025-01865-2","RegionNum":2,"RegionCategory":"生物学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"BIOCHEMISTRY & MOLECULAR BIOLOGY","Score":null,"Total":0}
引用次数: 0
Abstract
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.
期刊介绍:
The European Journal of Human Genetics is the official journal of the European Society of Human Genetics, publishing high-quality, original research papers, short reports and reviews in the rapidly expanding field of human genetics and genomics. It covers molecular, clinical and cytogenetics, interfacing between advanced biomedical research and the clinician, and bridging the great diversity of facilities, resources and viewpoints in the genetics community.
Key areas include:
-Monogenic and multifactorial disorders
-Development and malformation
-Hereditary cancer
-Medical Genomics
-Gene mapping and functional studies
-Genotype-phenotype correlations
-Genetic variation and genome diversity
-Statistical and computational genetics
-Bioinformatics
-Advances in diagnostics
-Therapy and prevention
-Animal models
-Genetic services
-Community genetics