ArticleGenetics in medicine : official journal of the American College of Medical Genetics2019
Rethinking the "open future" argument against predictive genetic testing of children.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 37 papers.
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Who cites it
37 citing papers in PubMed.
- Integrating Genetic Information into the Electronic Health Record: The Case of Adolescents' Revelation of Misattributed Parentage.Journal of bioethical inquiry · 2026Article
- Challenges associated with disclosing results from whole genome sequencing to diagnose paediatric rare diseases: analysis of parent-clinician interactions.Journal of medical genetics · 2026Article
- Getting the timing right. Autistic adolescents reflect on the value of an early diagnosis.Frontiers in psychiatry · 2026Article
- Should recipient parents have access to gamete donors' raw genomic data? Clinical, legal, and ethical considerations.Journal of assisted reproduction and genetics · 2025Article
- Pediatric nephrologists' perspectives and clinical practices related to genetic testing and education.Pediatric nephrology (Berlin, Germany) · 2025Article
- Pediatric DTC Genetic Testing for Adult-Onset Inherited Cancer Risk: The Perspectives of High-Risk Parents.Public health genomics · 2025Article
- Engaging adolescents and young adults in decisions about return of genomic research results: study protocol for a mixed-methods longitudinal clinical trial protocol.BMC medical informatics and decision making · 2024Article
- Predicting age of onset and progression of disease in late-onset genetic neurodegenerative diseases: An ethics review and research agenda.European journal of human genetics : EJHG · 2024Review
- Screening embryos for polygenic disease risk: a review of epidemiological, clinical, and ethical considerations.Human reproduction update · 2024Review
- Puberty Suppression for Pediatric Gender Dysphoria and the Child's Right to an Open Future.Archives of sexual behavior · 2024Article
- Genetic Screening, Cancer Syndromes, and the Radiologist.Radiology. Imaging cancer · 2024Article
- Obesity and Nutrigenetics Testing: New Insights.Nutrients · 2024Review
- Factors affecting couples' decision making about expanded prenatal cell-free DNA screening.Genetics in medicine open · 2024Article
- Stakeholder Perception of the Implementation of Genetic Risk Testing for Twelve Multifactorial Diseases.Genes · 2023Article
- Actionability of unanticipated monogenic disease risks in newborn genomic screening: Findings from the BabySeq Project.American journal of human genetics · 2023Article
- Engaging Adolescents and Young Adults in Decisions About Return of Genomic Research Results: a mixed-methods longitudinal clinical trial protocol.Research square · 2023Article
- International Society for Prenatal Diagnosis 2022 debate 3-Fetal genome sequencing should be offered to all pregnant patients.Prenatal diagnosis · 2023Article
- Scaling genetic resources: New paradigms for diagnosis and treatment of rare genetic disease.American journal of medical genetics. Part C, Seminars in medical genetics · 2023Article
- Parents' decision-making regarding whether to receive adult-onset only genetic findings for their children: Findings from the BabySeq Project.Genetics in medicine : official journal of the American College of Medical Genetics · 2023Article
- Return of non-ACMG recommended incidental genetic findings to pediatric patients: considerations and opportunities from experiences in genomic sequencing.Genome medicine · 2022Article
Corrections and comments
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Authors and funding
11 authors.
Funding
Abstract
Professional consensus has traditionally discouraged predictive genetic testing when no childhood interventions can reduce future morbidity or mortality. However, advances in genome sequencing and accumulating evidence that children and families cope adequately with predictive genetic information have weakened this consensus. The primary argument remaining against testing appeals to children's "right to an open future." It claims that the autonomy of the future adult is violated when others make an irreversible choice to obtain or disclose predictive genetic information during childhood. We evaluate this argument and conclude that children's interest in an open future should not be understood as a right. Rather an open future is one significant interest to weigh against other important interests when evaluating decisions. Thus, predictive genetic testing is ethically permissible in principle, as long as the interests promoted outweigh potential harms. We conclude by offering an expanded model of children's interests that might be considered in such circumstances, and present two case analyses to illustrate how this framework better guides decisions about predictive genetic testing in pediatrics.
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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.