ArticleJournal of pediatric psychology2009
Supporting family adaptation to presymptomatic and "untreatable" conditions in an era of expanded newborn screening.
Article in Journal of pediatric psychology, 2009. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 1 of them a synthesis that pooled it.
What it found
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The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
16 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Psychosocial issues of neonatal screening in the context of its major expansion: a scoping review.Frontiers in psychology · 2025Pooled it
- An Explorative Qualitative Study of the Role of a Genetic Counsellor to Parents Receiving a Diagnosis After a Positive Newborn Bloodspot Screening.International journal of neonatal screening · 2025Article
- Communicating a Positive Result at Newborn Screening and Parental Distress.International journal of neonatal screening · 2023Article
- A multidisciplinary approach and consensus statement to establish standards of care for Angelman syndrome.Molecular genetics & genomic medicine · 2022Review
- Early Check: translational science at the intersection of public health and newborn screening.BMC pediatrics · 2019Observational
- Foundation of the Newborn Screening Translational Research Network and its tools for research.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Review
- A New Era, New Strategies: Education and Communication Strategies to Manage Greater Access to Genomic Information.The Hastings Center report · 2018Article
- Psychosocial impact on mothers receiving expanded newborn screening results.European journal of human genetics : EJHG · 2018Article
- The Likely Impact of Congenital Zika Syndrome on Families: Considerations for Family Supports and Services.Pediatrics · 2018Review
- Parental preferences toward genomic sequencing for non-medically actionable conditions in children: a discrete-choice experiment.Genetics in medicine : official journal of the American College of Medical Genetics · 2018Article
- Evaluating Harms in the Assessment of Net Benefit: A Framework for Newborn Screening Condition Review.Maternal and child health journal · 2016Article
- Disclosing Secondary Findings from Pediatric Sequencing to Families: Considering the "Benefit to Families".The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics · 2015Article
- Fragile X protein in newborn dried blood spots.BMC medical genetics · 2014Article
- Introduction to the special issue: psychological aspects of genomics and child health.Journal of pediatric psychology · 2009Article
- Commentary: trailblazing a research agenda at the interface of pediatrics and genomic discovery--a commentary on the psychological aspects of genomics and child health.Journal of pediatric psychology · 2009Article
- Decisions to participate in fragile X and other genomics-related research: Native American and African American voices.Journal of cultural diversity · 2009Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
5 authors.
Funding
Abstract
objectiveAs technology advances, newborn screening will be possible for conditions not screened today. With an expansion of screening, strategies will be needed to support family adaptation to unexpected and possibly uncertain genetic information provided shortly after birth.
methodAlthough candidate conditions for expanded newborn screening will typically be associated with increased morbidity or mortality, for most there is no proven medical treatment that must be implemented quickly. Many will have clinical features that gradually emerge and for which the severity of impact is not predictable. Parents will seek guidance on information, support, and treatment possibilities. This article summarizes issues evoked by expanded newborn screening and suggests strategies for supporting families of identified children.
resultsWe propose four components necessary to support family adaptation to pre-symptomatic and "untreatable" conditions in an era of expanded newborn screening: (1) accurate and understandable information; (2) formal and informal support; (3) active surveillance; and (4) general and targeted interventions. We argue that no condition is "untreatable" and that a well-designed program of prevention and support has the potential to maximize benefit and minimize harm.
conclusionsPediatric psychologists can play important roles in an era of expanded newborn screening by helping families understand genetic information, make informed decisions about genetic testing, and cope with the potential psychosocial consequences of genetic information.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.