A 'cure' for Down syndrome: what do parents want?

Area of Science:

• Genetics and Developmental Biology
• Bioethics
• Pediatric Health

Background:

• Advancements in molecular genetics suggest potential therapeutics or cures for Down syndrome (DS).
• Limited data exists on parental perceptions regarding mitigating DS manifestations, particularly intellectual disability (ID), or curing the condition.

Purpose of the Study:

• To explore parental attitudes towards the possibility of reversing intellectual disability (ID) in Down syndrome (DS).
• To investigate parental willingness to 'cure' their child of DS if such treatments become available.

Main Methods:

• A questionnaire was distributed to parents of children with DS.
• 101 parents from the Lower Mainland Down Syndrome Society in British Columbia, Canada, completed the survey (41% response rate).

Main Results:

• A majority (61%) positively viewed reversing ID in DS.
• Only 41% would 'cure' their child, while 27% would not, and 32% were unsure.
• Increased child independence was the primary motivation for seeking a 'cure'.

Conclusions:

• Parental attitudes towards DS 'cures' are multifaceted, influenced by ethical considerations, societal values, and practical factors like age and caregiving burden.
• Findings can inform healthcare professionals supporting families with DS and guide future research directions.