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ERIC Number: EJ1238860
Record Type: Journal
Publication Date: 2020-Jan
Pages: 13
Abstractor: As Provided
ISBN: N/A
ISSN: ISSN-1944-7515
EISSN: N/A
Evaluating the Risks and Benefits of Genetic and Pharmacologic Interventions for Down Syndrome: Views of Parents
Riggan, Kirsten A.; Nyquist, Christina; Michie, Marsha; Allyse, Megan A.
American Journal on Intellectual and Developmental Disabilities, v125 n1 p1-13 Jan 2020
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.
American Association on Intellectual and Developmental Disabilities. P.O. Box 1897, Lawrence, KS 66044-1897. Tel: 785-843-1235; Fax: 785-843-1274; e-mail: AJMR@allenpress.com; Web site: http://www.aaiddjournals.org/
Publication Type: Journal Articles; Reports - Research
Education Level: N/A
Audience: N/A
Language: English
Sponsor: National Center for Advancing Translational Sciences (NCATS) (DHHS/NIH)
Authoring Institution: N/A
Grant or Contract Numbers: UL1TR002377