Clin Genet. 2014 Feb 18. doi: 10.1111/cge.12364. [Epub ahead of print]

A "cure" for Down syndrome: What do parents want?

Inglis A, Lohn Z, Austin JC, Hippman C.

Author information

• University of British Columbia Department of Psychiatry, Vancouver, Canada; University of British Columbia Department of Medical Genetics, Vancouver, Canada.

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.