Evaluating the Risks and Benefits of Genetic and Pharmacologic Interventions for Down Syndrome: Views of Parents.
Kirsten A Riggan, Christina Nyquist, Marsha Michie and 1 others
PMID 31877259WHAT IT FOUND
Parents of people with Down syndrome were split on a hypothetical prenatal chromosome-silencing intervention.
Many would consider a daily memory and attention pill, but worried about unknown long-term effects and personality changes.
Key findings
01Parents were divided on a hypothetical prenatal intervention to silence chromosome 21: 50.9% supported it and 48.1% opposed it.
02Two-thirds of respondents (67.9%) said they would choose or encourage a hypothetical daily pill to improve memory and focus, while 31.2% opposed it.
03Parents who opposed the pediatric pill cited unknown long-term effects and feared increased self-consciousness and lessened affection.
STILL TO COME
How it was doneWhat they found
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What it does not show
The interventions were hypothetical scenarios based on pre-clinical research, not real treatments, so the responses may not match how parents decide about actual therapy. The survey was anonymous and shared through social media and Down syndrome advocacy groups, so response rate and geographic distribution could not be determined. Online distribution through advocacy groups may have biased the sample toward younger, more educated, computer-literate, and advocacy-involved parents. Only parents were included, not individuals with Down syndrome, whose views may differ. The analysis could not control for how each parent interpreted the scenario risks and benefits.
Declared interests
The authors reported no financial conflicts of interest.
The easy way to misread this
Do not read these percentages as support for real genetic or drug treatment. They describe choices about hypothetical scenarios, not tested interventions.