Evaluating the risks and benefits of genetic and pharmacologic interventions for down syndrome: Views of parents

Kirsten A. Riggan, Christina Nyquist, Marsha Michie, Megan A. Allyse

Research output: Contribution to journalArticlepeer-review

Abstract

Researchers are investigating new technologies to mitigate or prevent symptoms of Down syndrome (DS), including chromosome silencing and pharmacotherapy. We surveyed parents of individuals with DS to assess their opinions on two hypothetical scenarios describing prenatal chromosome silencing and pediatric pharmacological intervention to improve neurocognition in children with DS. Although a slim majority of participants supported the availability of both therapies, respondent support was contingent on the risks presented, including the risk of miscarriage in the prenatal intervention and the impact of pharmaceuticals on their children's personality. Many parents expressed ambivalence, articulating a desire to improve their children's quality of life but requiring more safety and efficacy research before agreeing to a genetic or pharmacological intervention.

Original languageEnglish (US)
Pages (from-to)1-13
Number of pages13
JournalAmerican Journal on Intellectual and Developmental Disabilities
Volume25
Issue number1
DOIs
StatePublished - 2020

Keywords

  • Chromosome silencing
  • Down syndrome
  • Gene therapy
  • Survey
  • Trisomy 21

ASJC Scopus subject areas

  • Pediatrics, Perinatology, and Child Health
  • Neuropsychology and Physiological Psychology
  • Developmental and Educational Psychology
  • Arts and Humanities (miscellaneous)
  • Clinical Neurology
  • Psychiatry and Mental health

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