دورية أكاديمية
أعرض في EDS

Parental Preferences for Expanded Newborn Screening: What Are the Limits?

التفاصيل البيبلوغرافية
العنوان: Parental Preferences for Expanded Newborn Screening: What Are the Limits?
المؤلفون: Liang NSY; Department of Genetic Counselling, The Hospital for Sick Children, Toronto, ON M5G 1X8, Canada.; Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, ON M5G 1X8, Canada., Watts-Dickens A; Department of Genetic Counselling, The Hospital for Sick Children, Toronto, ON M5G 1X8, Canada.; Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, ON M5G 1X8, Canada.; Department of Molecular Genetics, University of Toronto, Toronto, ON M5S 1A8, Canada., Chitayat D; Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, ON M5G 1X8, Canada.; Department of Molecular Genetics, University of Toronto, Toronto, ON M5S 1A8, Canada., Babul-Hirji R; Department of Genetic Counselling, The Hospital for Sick Children, Toronto, ON M5G 1X8, Canada.; Division of Clinical and Metabolic Genetics, The Hospital for Sick Children, Toronto, ON M5G 1X8, Canada.; Department of Molecular Genetics, University of Toronto, Toronto, ON M5S 1A8, Canada., Chakraborty P; Newborn Screening Ontario, Ottawa, ON K1H 8M8, Canada., Hayeems RZ; Child Health Evaluative Sciences, The Hospital for Sick Children, Toronto, ON M5G 1X8, Canada.; Health Policy, Management and Evaluation, University of Toronto, ON M5T 3M6, Canada.
المصدر: Children (Basel, Switzerland) [Children (Basel)] 2023 Aug 09; Vol. 10 (8). Date of Electronic Publication: 2023 Aug 09.
نوع المنشور: Journal Article
اللغة: English
بيانات الدورية: Publisher: MDPI AG Country of Publication: Switzerland NLM ID: 101648936 Publication Model: Electronic Cited Medium: Print ISSN: 2227-9067 (Print) Linking ISSN: 22279067 NLM ISO Abbreviation: Children (Basel) Subsets: PubMed not MEDLINE
أسماء مطبوعة: Original Publication: Basel, Switzerland : MDPI AG, [2014]-
مستخلص: 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.
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معلومات مُعتمدة: Jane Engelberg Memorial Fund National Society of Genetic Counselors; Master of Genetic Counselling program University of Toronto
فهرسة مساهمة: Keywords: newborn genomic sequencing; newborn screening; next-generation sequencing
تواريخ الأحداث: Date Created: 20230826 Latest Revision: 20230828
رمز التحديث: 20240829
مُعرف محوري في PubMed: PMC10453746
DOI: 10.3390/children10081362
PMID: 37628361
قاعدة البيانات: MEDLINE
الوصف
تدمد:2227-9067
DOI:10.3390/children10081362