ArticleThe American journal of bioethics : AJOB2014
Addressing the ethical challenges in genetic testing and sequencing of children.
Article in The American journal of bioethics : AJOB, 2014. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 61 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
61 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- Portuguese Society of Ophthalmology and Portuguese Society of Human Genetics Joint Clinical Practice Guidelines for Genetic Testing in Inherited Retinal Dystrophies.Clinical genetics · 2025Guideline
- The psychological impact of genetic information on children: a systematic review.Genetics in medicine : official journal of the American College of Medical Genetics · 2016Pooled it
- Designing inclusive newborn sequencing research: insights from parents in underrepresented communities.BMC medical genomics · 2026Article
- Performance of recommended management among pediatric patients identified through genomic screening.Translational behavioral medicine · 2025Observational
- Uncertain futures and unsolicited findings in pediatric genomic sequencing: guidelines for return of results in cases of developmental delay.BMC medical ethics · 2023Article
- Policy-making and implementation for newborn bloodspot screening in Europe: a comparison between EURORDIS principles and UK practice.The Lancet regional health. Europe · 2023Review
- Return of Participants' Incidental Genetic Research Findings: Experience from a Case-Control Study of Asthma in an American Indian Community.Journal of personalized medicine · 2023Article
- Studying the impact of translational genomic research: Lessons from eMERGE.American journal of human genetics · 2023Review
- Return of Participants' Incidental Genetic Research Findings: Experience from a Case-Control Study of Asthma in an American Indian Community.Research square · 2023Article
- Genomic tools for health: Secondary findings as findings to be shared.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- What does the best interests principle of the convention on the rights of the child mean for paediatric healthcare?European journal of pediatrics · 2022Review
- Population genomic screening: Ethical considerations to guide age at implementation.Frontiers in genetics · 2022Review
- 'We Should View Him as an Individual': The Role of the Child's Future Autonomy in Shared Decision-Making About Unsolicited Findings in Pediatric Exome Sequencing.Health care analysis : HCA : journal of health philosophy and policy · 2021Article
- The Moral Foundations of Child Health and Social Policies: A Critical Interpretive Synthesis.Children (Basel, Switzerland) · 2021Article
- Article
- Predictive Testing for Tumor Predisposition Syndromes in Pediatric Relatives: An Asian Experience.Frontiers in pediatrics · 2020Article
- Article
- An Age-Based Framework for Evaluating Genome-Scale Sequencing Results in Newborn Screening.The Journal of pediatrics · 2019Article
- Giving adolescents a voice: the types of genetic information adolescents choose to learn and why.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- Potential use of clinical polygenic risk scores in psychiatry - ethical implications and communicating high polygenic risk.Philosophy, ethics, and humanities in medicine : PEHM · 2019Review
1 more citing papers are in PubMed but not listed here.
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Authors and funding
7 authors.
Funding
Abstract
American Academy of Pediatrics (AAP) and American College of Medical Genetics (ACMG) recently provided two recommendations about predictive genetic testing of children. The Clinical Sequencing Exploratory Research Consortium's Pediatrics Working Group compared these recommendations, focusing on operational and ethical issues specific to decision making for children. Content analysis of the statements addresses two issues: (1) how these recommendations characterize and analyze locus of decision making, as well as the risks and benefits of testing, and (2) whether the guidelines conflict or come to different but compatible conclusions because they consider different testing scenarios. These statements differ in ethically significant ways. AAP/ACMG analyzes risks and benefits using best interests of the child and recommends that, absent ameliorative interventions available during childhood, clinicians should generally decline to order testing. Parents authorize focused tests. ACMG analyzes risks and benefits using the interests of the child and other family members and recommends that sequencing results be examined for additional variants that can lead to ameliorative interventions, regardless of age, which laboratories should report to clinicians who should contextualize the results. Parents must accept additional analysis. The ethical arguments in these statements appear to be in tension with each other.
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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.