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Shared Decision-Making for Genetic Tests With Children and Young People With Intellectual Disability: Considerations
Manjekah Dunn1,2, Iva Strnadová3,4,5, Michelle Tso1
1Discipline of Paediatrics and Child Health, School of Clinical Medicine, Faculty of Medicine and Health, University of New South Wales Sydney, Sydney, New South Wales, Australia.
Journal of Paediatrics and Child Health
|October 1, 2025
Summary
Genetic testing is recommended for intellectual disability, but accessible resources and training are lacking. Co-produced resources aim to empower individuals with intellectual disability and their families regarding genetic medicine.
Area of Science:
- Medical Genetics
- Intellectual Disability Research
- Healthcare Accessibility
Background:
- Over 1000 genetic causes exist for neurodevelopmental conditions.
- Genetic testing, including exome sequencing, is recommended for intellectual disability.
- Many genetic conditions are inherited, impacting families.
Purpose of the Study:
- To address the exclusion of individuals with intellectual disability from genetic medicine.
- To improve informed decision-making about genetic tests and understanding results.
- To equip healthcare professionals with resources to support these individuals and families.
Main Methods:
- Discussing key approaches for healthcare professionals.
- Highlighting co-produced resources developed with stakeholders.
- Focusing on empowering children, young people, and parents with intellectual disability.
Main Results:
- Identified a lack of accessible resources and healthcare professional training.
- Emphasized the need for inclusive, person-centred, and respectful healthcare.
- Co-produced resources aim to bridge the gap in genetic medicine participation.
Conclusions:
- Genetic medicine must be equitable and accessible for people with intellectual disability.
- Inclusive healthcare practices are crucial for informed genetic decision-making.
- Empowering individuals with intellectual disability enhances their participation in genetic healthcare.
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