Joint First Authors.
SOCIAL AND BEHAVIOURAL RESEARCH IN CLINICAL GENETICS
A ‘cure’ for Down syndrome: what do parents want?
Article first published online: 21 MAR 2014
© 2014 John Wiley & Sons A/S. Published by John Wiley & Sons Ltd
Volume 86, Issue 4, pages 310–317, October 2014
How to Cite
A ‘cure’ for Down syndrome: what do parents want?, , , .
The authors declare that they have no conflict of interest.
- Issue published online: 16 SEP 2014
- Article first published online: 21 MAR 2014
- Accepted manuscript online: 18 FEB 2014 11:27AM EST
- Manuscript Accepted: 16 FEB 2014
- Manuscript Revised: 11 FEB 2014
- Manuscript Received: 1 DEC 2013
- National Society of Genetic Counselors' Prenatal Special Interest Group
- Rare Disease Foundation
- Canada Research Chairs Program
- Michael Smith Foundation for Health Research
- BC Mental Health and Addictions Research Institute
- Women's Health Research Institute
- Down syndrome;
- intellectual disability;
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.