ArticleGenetics in medicine : official journal of the American College of Medical Genetics2018
Anticipating uncertainty and irrevocable decisions: provider perspectives on implementing whole-genome sequencing in critically ill children with heart disease.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 1 of them a synthesis that pooled it.
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Who cites it
20 citing papers in PubMed, 1 synthesis or guideline pooled it, 35 citations in OpenAlex.
- Measures of Utility Among Studies of Genomic Medicine for Critically Ill Infants: A Systematic Review.JAMA network open · 2022Pooled it
- Influence of Genetic Information on Neonatologists' Decisions: A Psychological Experiment.Pediatrics · 2022Trial
- Managing the Uncertainty of "Precision" While Navigating Goals of Care: A Framework for Collaborative Interpretation of Complex Genomic Testing Results in Critically-Ill Neonates.Children (Basel, Switzerland) · 2025Article
- How Neonatologists Use Genetic Information.The Journal of pediatrics · 2025Article
- Impact of genomic sequencing information on physicians' treatment recommendations for children with congenital heart disease.Genetics in medicine open · 2025Article
- Implementation of genetic testing for heritable cardiac conditions: A scoping review.Genetics in medicine open · 2025Review
- Research participant perceptions of personal utility in disclosure of individual research results from genomic analysis.Journal of community genetics · 2024Article
- Ethical and Legal Issues Surrounding Genetic Testing in the NICU.NeoReviews · 2024Article
- Frequency and reasons that parents decline genetic testing for critically ill neonates.Genetics in medicine open · 2024Article
- Intensive Care Clinicians' Perspectives on Ethical Challenges Raised by Rapid Genomic Testing in Critically Ill Infants.Children (Basel, Switzerland) · 2023Article
- Rapid Genomic Testing in Intensive Care: Health Professionals' Perspectives on Ethical Challenges.Children (Basel, Switzerland) · 2023Article
- Hospital-level variation in genetic testing in children's hospitals' neonatal intensive care units from 2016 to 2021.Genetics in medicine : official journal of the American College of Medical Genetics · 2023Article
- Rapid genomic testing for critically ill children: time to become standard of care?European journal of human genetics : EJHG · 2022Review
- Genetic Testing Is Messier in Practice than in Theory: Lessons from Neonatology.The American journal of bioethics : AJOB · 2022Article
- How neonatologists use genetic testing: findings from a national survey.Journal of perinatology : official journal of the California Perinatal Association · 2022Article
- Parental Attitudes Toward Clinical Genomic Sequencing in Children With Critical Cardiac Disease.Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies · 2021Article
- Translating genomic testing results for pediatric critical care: Opportunities for genetic counselors.Journal of genetic counseling · 2020Article
- Whole genome sequencing reveals that genetic conditions are frequent in intensively ill children.Intensive care medicine · 2019Article
- Rapid Challenges: Ethics and Genomic Neonatal Intensive Care.Pediatrics · 2019Article
- Privacy and ethical challenges in next-generation sequencing.Expert review of precision medicine and drug development · 2019Article
Corrections and comments
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Authors and funding
4 authors at 2 institutions in 1 country.
Funding
Abstract
purposeTo investigate the potential impacts of whole-genome sequencing (WGS) in the pediatric critical-care context, we examined how clinicians caring for critically ill children with congenital heart disease (CHD) anticipate and perceive the impact of WGS on their decision-making process and treatment recommendations.
methodsWe conducted semistructured in-person and telephone interviews of clinicians involved in the care of critically ill children with CHD at a high-volume pediatric heart center. We qualitatively analyzed the transcribed interviews.
resultsIn total, 34 clinicians were interviewed. Three themes emerged: (i) uncertainty about the accuracy of WGS testing and adequacy of testing validation; (ii) the use of WGS to facilitate life-limiting decisions such as futility, rationing, and selective prenatal termination; and (iii) moral distress over using WGS with a lack of decision support.
conclusionDespite uncertainty about WGS testing, the interviewed clinicians were using, and anticipated expanding the use of, WGS results to justify declarations of futility, withdrawal of care, and rationing in critically ill children with CHD. This situation is causing moral distress in providers who have to make high-stakes decisions involving WGS results, with only partial understanding of them. Decision support for clinicians, and discussion with families of the risks of using WGS for rationing or withdrawal, is needed.
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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.