ArticleGenetics in medicine : official journal of the American College of Medical Genetics2012
Engaging children in genomics research: decoding the meaning of assent in research.
Article in Genetics in medicine : official journal of the American College of Medical Genetics, 2012. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 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
21 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- The full spectrum of ethical issues in pediatric genome-wide sequencing: a systematic qualitative review.BMC pediatrics · 2021Pooled it
- Pediatric clinical exome/genome sequencing and the engagement process: encouraging active conversation with the older child and adolescent: points to consider-a statement of the American College of Medical Genetics and Genomics (ACMG).Genetics in medicine : official journal of the American College of Medical Genetics · 2018Guideline
- Reimagining Assent: When Things Get Lost in Translation in International Pediatric Research.Asian bioethics review · 2025Article
- Genomic sequencing research in pediatric cancer care: Decision making, attitudes, and perceived utility among adolescents and young adults and their parents.Genetics in medicine : official journal of the American College of Medical Genetics · 2024Article
- Views of Adolescents and Young Adults with Cancer and Their Oncologists Toward Patients' Participation in Genomic Research.Journal of adolescent and young adult oncology · 2023Article
- Children and bioethics: clarifying consent and assent in medical and research settings.British medical bulletin · 2023Review
- Rethinking the "open future" argument against predictive genetic testing of children.Genetics in medicine : official journal of the American College of Medical Genetics · 2019Article
- Ethical and Policy Considerations for Genomic Testing in Pediatric Research: The Path Toward Disclosing Individual Research Results.American journal of kidney diseases : the official journal of the National Kidney Foundation · 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
- A Tale of Two Capacities: Including Children and Decisionally Vulnerable Adults in Biomedical Research.Frontiers in genetics · 2019Article
- Standardized approaches for clinical sampling and endpoint ascertainment in tuberculous meningitis studies.Wellcome open research · 2019Article
- Children's Decision-Making Involvement About Research Participation: Associations With Perceived Fairness and Self-Efficacy.Journal of empirical research on human research ethics : JERHRE · 2017Article
- Psychosocial effects in parents and children 12 years after newborn genetic screening for type 1 diabetes.European journal of human genetics : EJHG · 2017Article
- An Observational Study of Children's Involvement in Informed Consent for Exome Sequencing Research.Journal of empirical research on human research ethics : JERHRE · 2017Observational
- Personalized assent for pediatric biobanks.BMC medical ethics · 2016Article
- Lay Attitudes Toward Trust, Uncertainty, and the Return of Pediatric Research Results in Biobanking.AJOB empirical bioethics · 2016Article
- Practical guidance on informed consent for pediatric participants in a biorepository.Mayo Clinic proceedings · 2014Article
- Returning incidental findings from genetic research to children: views of parents of children affected by rare diseases.Journal of medical ethics · 2014Article
- Clarifying assent in pediatric research.European journal of human genetics : EJHG · 2014Article
- The disclosure of incidental genomic findings: an "ethically important moment" in pediatric research and practice.Journal of community genetics · 2013Article
Corrections and comments
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Authors and funding
2 authors.
Funding
Abstract
This article considers how to approach assent from children for genomics research. We examine the "protection" rationale for assent, which emerged in the context of a historical debate regarding whether it was ever acceptable to subject children to risks of research for the benefit of others. We also consider the "development" rationale for assent, which has been articulated for pediatric clinical practice, as an alternative approach for addressing this issue. We consider these rationales in light of the more recent literature on pediatric assent in the research context, and suggest that "engagement" is a more useful construct. This construct emphasizes that children have development capacities that should be respected and includes a limited role for assent to allow children to protect themselves. Engaging children does not require disclosure of all of the benefits and risks of genomics research that might be conveyed to an adult and may permit a degree of parental control over decisions. Using a construct that emphasizes respect can also justify asking children, as they approach adulthood, about their willingness to participate in ongoing genomics research, and yet also permit research to continue if some cannot be reached to obtain consent.
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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.