1. A 'cure' for Down syndrome: what do parents want?
- Author
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Inglis, A., Lohn, Z., Austin, J. C., and Hippman, C.
- Subjects
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DOWN syndrome , *PEOPLE with intellectual disabilities , *MOLECULAR genetics , *THERAPEUTICS , *LONG-term care facilities - Abstract
Recent advancements in molecular genetics raise the possibility that therapeutics or a 'cure' for Down syndrome ( DS) may become available. However, there are no data regarding how parents of children with DS perceive the possibility of mitigating specific manifestations such as the intellectual disability ( ID) associated with DS, or curing the condition entirely. To explore these issues, we distributed a questionnaire to members of the Lower Mainland Down Syndrome Society in British Columbia, Canada. Questionnaires were completed by 101 parents (response rate = 41%). A majority (61%) viewed the possibility of reversing ID in DS positively, but only 41% said that they would 'cure' their child of DS if it were possible. Twenty-seven percent of respondents said they would not 'cure' their child, and 32% were unsure if they would 'cure' their child. The most commonly cited motivation for opting for a 'cure' was to increase their child's independence. However, parental attitudes' towards a 'cure' for DS were complex, affected by ethical issues, perceived societal values, and pragmatic factors such as the age of the individual and long-term care-giving burden. These findings could be used by healthcare professionals supporting families who include a member with DS and to direct future research. [ABSTRACT FROM AUTHOR]
- Published
- 2014
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