SurveyAmerican journal on intellectual and developmental disabilities2020

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 31877259

WHAT 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.

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The study

Participants
532 parents of individuals with Down syndrome
Certainty of evidence
Low

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    Cite

    Kirsten A Riggan, Christina Nyquist, Marsha Michie, et al. Evaluating the Risks and Benefits of Genetic and Pharmacologic Interventions for Down Syndrome: Views of Parents. American journal on intellectual and developmental disabilities. 2020.

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