A ‘cure’ for Down syndrome: what do parents want?

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.

Low dose EGCG treatment beginning in adolescence does not improve cognitive impairment in a Down syndrome mouse model

“…Underscoring this priority, 61% of parents of children with DS indicated they would like to reverse the intellectual disability (ID) associated with DS (Inglis, Lohn, Austin, & Hippman, 2014). Caregivers increasingly seek alternatives on their own; a study found that 83% of families were currently using or had used complementary or alternative medicine to alleviate symptoms of DS (Prussing, Sobo, Walker, & Kurtin, 2005).…”

Physical Activity Engagement in Young People with Down Syndrome: Investigating Parental Beliefs

“…The choice of parents is justified because their role to influence activities and intervention is well documented in literature (Inglis et al . ). Specifically, the present authors investigated the beliefs regarding facilitators and barriers of PA and sport as well as physical and psychological benefits.…”

Medicine’s Valuing of “Normal” Cognitive Ability

“…As a direct consequence of the narrow design of this research, the targets of interventions are sometimes more controversial among patients and their families than those immersed in medical culture realize. For example, when parents of people with Down syndrome in Canada were asked if they felt researchers should be trying to find a cure for Down syndrome, only 43 percent said "yes" [26]. Some research advancements hailed by the media as possible "cures" might be met by resistance from some parents of those with Down syndrome, a phenomenon described by one journalist as "Down syndrome soul searching" [27].…”