ArticleGenetics in medicine : official journal of the American College of Medical Genetics2016
Parents' experiences 12 years after newborn screening for genetic susceptibility to type 1 diabetes and their attitudes to whole-genome sequencing in newborns.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 27 papers, 4 of them syntheses that pooled it.
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Who cites it
27 citing papers in PubMed, 4 syntheses or guidelines pooled it, 28 citations in OpenAlex.
- Psychosocial implications, acceptability and ethics of screening for paediatric type 1 diabetes: a systematic review and mixed methods evidence synthesis.Diabetologia · 2026Pooled it
- Benefits and harms of antenatal and newborn screening programmes in health economic assessments: the VALENTIA systematic review and qualitative investigation.Health technology assessment (Winchester, England) · 2024Pooled it
- Absorbing it all: A meta-ethnography of parents' unfolding experiences of newborn screening.Social science & medicine (1982) · 2021Pooled it
- Principles of Genomic Newborn Screening Programs: A Systematic Review.JAMA network open · 2021Pooled it
- Who and how we engage: A systemic mapping of stakeholder perspectives on genomic newborn screening.European journal of human genetics : EJHG · 2026Article
- Parental and public views on genomic newborn screening: a systematic review.European journal of human genetics : EJHG · 2026Review
- Exploring the psychosocial implications of general population screening for paediatric type 1 diabetes in Europe: Protocol for a mixed-methods study.Diabetic medicine : a journal of the British Diabetic Association · 2026Article
- Newborn screening for type 1 diabetes using genome-based risk scores in the Early Check program.American journal of human genetics · 2026Article
- "The ability to get ahead": Australian parent perspectives on genomics in newborn screening and considerations for potential models of care.European journal of human genetics : EJHG · 2025Article
- Psychological Impact of Screening for Risk of Type 1 Diabetes: an Update.Current diabetes reports · 2025Review
- Parents' perspectives on expanded newborn genomic screening in Abu Dhabi, United Arab Emirates.Human genomics · 2025Article
- The Current Landscape for Screening and Monitoring of Early-Stage Type 1 Diabetes.Journal of paediatrics and child health · 2025Review
- Genomic sequencing in newborn screening: balancing consent with the right of the asymptomatic at-risk child to be found.European journal of human genetics : EJHG · 2025Article
- Community Collaboration in Public Health Genetic Literacy: Methods for Co-Designing Educational Resources for Equitable Genomics Research and Practice.Public health genomics · 2025Article
- Key informant perspectives on implementing genomic newborn screening: a qualitative study guided by the Action, Actor, Context, Target, Time framework.European journal of human genetics : EJHG · 2024Article
- Australian Public Perspectives on Genomic Newborn Screening: Risks, Benefits, and Preferences for Implementation.International journal of neonatal screening · 2024Article
- Age-Based Genomic Screening during Childhood: Ethical and Practical Considerations in Public Health Genomics Implementation.International journal of neonatal screening · 2023Article
- Psychosocial Issues Related to Newborn Screening: A Systematic Review and Synthesis.International journal of neonatal screening · 2022Review
- Parental Guidance Suggested: Engaging Parents as Partners in Research Studies of Genomic Screening for a Pediatric Population.Frontiers in genetics · 2022Article
- Utility of Genetic Testing from the Perspective of Parents/Caregivers: A Scoping Review.Children (Basel, Switzerland) · 2021Article
Corrections and comments
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Authors and funding
1 author at 1 institution in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
purposeThe potential for utilizing whole-genome sequencing in newborn screening (NBS) has been recognized, but the ethical, legal, and social issues of this may require further analysis. This article begins to address the gap in the literature concerning psychosocial effects of "genomic NBS," focusing on later effects of screening for genetic susceptibility to a single, complex disorder: type 1 diabetes (T1D). It also examines parental attitudes toward potential future expansions of NBS.
methodsFifteen semistructured interviews were conducted with parents of children who had been tested for genetic susceptibility to T1D 12 years previously.
resultsParents in this study were not psychologically burdened by knowledge of their child's genetic risk but perceived little benefit. Most of these parents disclosed the result to their child at age 12 years without obvious adverse impact. Parents were unenthusiastic about potential future expansions of NBS to include similar genomic tests.
conclusionsAbsence of adverse psychosocial effects and ease of disclosure to the child represent initial positive findings, but they require replication and further evaluation in relation to uptake of prevention strategies. Attitudes of parents to "genomic NBS" are variable, suggesting that parental choice will be an important component of future screening programs.
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