Parental Preferences for Expanded Newborn Screening
What Are the Limits
Bibliographic Data
| ID | 15716308 |
|---|---|
| Authors | Nicole Si Yan Liang (0000-0002-3765-0766, Hospital for Sick Children), Abby Watts-Dickens (University of Toronto), David Chitayat (0000-0003-1944-7294, Hospital for Sick Children), Riyana Babul‐Hirji (University of Toronto), Riyana Babul-Hirji (Department of Genetic Counselling, The Hospital for Sick Children, Toronto, ON M5G 1X8, Canada), Pranesh Chakraborty (0000-0002-7719-0821, Newborn Screening Ontario), Robin Z Hayeems (0000-0003-3269-8004, University of Toronto, corresponding author) |
| Year | 2023 |
| Volume | 10 |
| Issue | 8 |
| Pages | 1362-1362 |
| Publication date | 2023-08-09 |
| Peer Reviewed | Yes |
| Open Access | Yes |
| Type | ARTICLE |
| Venue | Children (JOURNAL) |
| Journal identifiers | ISSN: 2227-9067 • E-ISSN: 2227-9067 |
| Publisher | Multidisciplinary Digital Publishing Institute (PUBLISHER • CH) |
| DOI | 10.3390/children10081362 |
| PMID | 37628361 |
| OpenAlex | W4385696863 |
| Language | EN |
| References cited | 51 |
The use of next-generation sequencing technologies such as genomic sequencing in newborn screening (NBS) could enable the detection of a broader range of conditions. We explored parental preferences and attitudes towards screening for conditions for which varying types of treatment exist with a cross-sectional survey completed by 100 parents of newborns who received NBS in Ontario, Canada. The survey included four vignettes illustrative of hypothetical screening targets, followed by questions assessing parental attitudes. Chi-square tests were used to compare frequency distributions of preferences. Results show that most parents supported NBS for conditions for which only supportive interventions are available, but to a significantly lesser degree than those with disease-specific treatments (99% vs. 82-87%, p ≤ 0.01). For conditions without an effective treatment, the type of supportive care and age of onset of the condition did not significantly alter parent perceptions of risks and benefits. Parents are interested in expanded NBS for conditions with only supportive interventions in childhood, despite lower levels of perceived benefit for the child and greater anticipated anxiety from screen-positive results. These preferences suggest that the expansion of NBS may require ongoing deliberation of perceived benefits and risks and enhanced approaches to education, consent, and support
Anxiety · Deliberation · Family medicine · Newborn screening · Perception · Psychiatry · Psychological intervention · Clinical Psychology · Genomic variations and chromosomal abnormalities · Genomics and Rare Diseases · Medicine · Prenatal Screening and Diagnostics · Psychology · Pediatrics
| Citation velocity | historical |
|---|---|
| Highly cited | No |