ArticlePediatrics2016
Whole-Genome Sequencing and Disability in the NICU: Exploring Practical and Ethical Challenges.
Article in Pediatrics, 2016. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 24 papers, 2 of them syntheses that pooled it.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
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
24 citing papers in PubMed, 2 syntheses or guidelines pooled it, 38 citations in OpenAlex.
- Measures of Utility Among Studies of Genomic Medicine for Critically Ill Infants: A Systematic Review.JAMA network open · 2022Pooled it
- The full spectrum of ethical issues in pediatric genome-wide sequencing: a systematic qualitative review.BMC pediatrics · 2021Pooled 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
- Research Ethics Challenges, Controversies and Difficulties in Intensive Care Units-A Systematic Review of Theoretical Concepts.Nursing reports (Pavia, Italy) · 2025Review
- How Neonatologists Use Genetic Information.The Journal of pediatrics · 2025Article
- Blazing the Trail of Non-Invasive Prenatal Screening Expanded Use: Healthcare Providers' Perspectives.Prenatal diagnosis · 2025Article
- 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
- Managing Prognosis in Precision Medicine: Utility, Imagination, and Communication.Children (Basel, Switzerland) · 2023Article
- Moving from 'fully' to 'appropriately' informed consent in genomics: The PROMICE framework.Bioethics · 2022Article
- Courtesy stigma of parents of children with Down syndrome: Adaptation process and transcendent stage.Journal of genetic counseling · 2022Article
- "We've Opened Pandora's Box, Haven't We?" Clinical Geneticists' Views on Ethical Aspects of Genomic Testing in Neonatal Intensive Care.Balkan journal of medical genetics : BJMG · 2022Article
- Genetic Testing Is Messier in Practice than in Theory: Lessons from Neonatology.The American journal of bioethics : AJOB · 2022Article
- Rapid genomic testing for critically ill children: time to become standard of care?European journal of human genetics : EJHG · 2022Review
- Consent for rapid genomic sequencing for critically ill children: legal and ethical issues.Monash bioethics review · 2021Article
- Genome-wide sequencing in acutely ill infants: genomic medicine's critical application?Genetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- Rapid Challenges: Ethics and Genomic Neonatal Intensive Care.Pediatrics · 2019Article
- Pharmacogenomic Testing In Pediatrics: Navigating The Ethical, Social, And Legal Challenges.Pharmacogenomics and personalized medicine · 2019Article
- Anticipating uncertainty and irrevocable decisions: provider perspectives on implementing whole-genome sequencing in critically ill children with heart disease.Genetics in medicine : official journal of the American College of Medical Genetics · 2018Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
1 author at 1 institution in 1 country.
Funding
Abstract
Clinical whole-genome sequencing (WGS) promises to deliver faster diagnoses and lead to better management of care in the NICU. However,several disability rights advocates have expressed concern that clinical use of genetic technologies may reinforce and perpetuate stigmatization of and discrimination against disabled persons in medical and social contexts. There is growing need, then, for clinicians and bioethicists to consider how the clinical use of WGS in the newborn period might exacerbate such harms to persons with disabilities. This article explores ways to extend these concerns to clinical WGS in neonatal care. By considering these perspectives during the early phases of expanded use of WGS in the NICU, this article encourages clinicians and bioethicists to continue to reflect on ways to attend to the concerns of disability rights advocates, foster trust and cooperation between the medical and disability communities, and forestall some of the social harms clinical WGS might cause to persons with disabilities and their families.
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What OpenQuestion holds
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.