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Parental Preferences for Expanded Newborn Screening: What Are the Limits?
Nicole S Y Liang1,2, Abby Watts-Dickens1,2,3, David Chitayat2,3
1Department of Genetic Counselling, The Hospital for Sick Children, Toronto, ON M5G 1X8, Canada.
Children (Basel, Switzerland)
|August 26, 2023
Summary
Parents support expanded newborn screening (NBS) for conditions with supportive care, though less than for treatable conditions. Parental attitudes suggest a need for careful consideration of benefits, risks, and enhanced support for broader NBS implementation.
Area of Science:
- Genetics and Genomics
- Public Health
- Pediatrics
Background:
- Next-generation sequencing (NGS) technologies, including genomic sequencing, offer potential for expanding newborn screening (NBS) to detect a wider array of conditions.
- Current NBS programs primarily focus on conditions with established treatments, raising questions about parental acceptance of screening for conditions with limited or supportive interventions.
Purpose of the Study:
- To explore parental preferences and attitudes regarding the inclusion of conditions with varying treatment availabilities in newborn screening (NBS).
- To understand parental perspectives on screening for conditions requiring only supportive interventions versus those with disease-specific treatments.
Main Methods:
- A cross-sectional survey was administered to 100 parents of newborns who underwent NBS in Ontario, Canada.
- The survey utilized four vignettes depicting hypothetical screening targets, followed by questions assessing parental attitudes and preferences.
- Chi-square tests were employed to analyze differences in parental preferences.
Main Results:
- A significant majority of parents supported NBS for conditions with only supportive interventions (82-87%), but this support was notably lower than for conditions with disease-specific treatments (99%, p ≤ 0.01).
- For conditions lacking effective treatments, parental perceptions of risks and benefits were not significantly influenced by the type of supportive care or the condition's age of onset.
- Parents expressed interest in expanded NBS for conditions with only supportive childhood interventions, despite anticipating lower perceived benefits and higher anxiety.
Conclusions:
- Parental willingness to consider expanded NBS for conditions with supportive care indicates a potential for broader screening implementation.
- The expansion of NBS necessitates careful deliberation regarding perceived benefits and risks, alongside enhanced strategies for education, informed consent, and parental support.
- Ongoing dialogue is crucial to align NBS expansion with parental values and expectations.
