ArticleGenetics in medicine : official journal of the American College of Medical Genetics2019
Giving adolescents a voice: the types of genetic information adolescents choose to learn and why.
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 30 papers, 1 of them a synthesis that pooled it.
What it found
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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
30 citing papers in PubMed, 1 synthesis or guideline pooled it.
- A systematic review of knowledge, attitude and practice of pharmacogenomics in pediatric oncology patients.Pharmacology research & perspectives · 2023Pooled it
- Decisional Conflict Among Adolescents and Young Adults Before and After Facilitated Decision-Making About Learning Personal Genomic Information.The Journal of adolescent health : official publication of the Society for Adolescent Medicine · 2026Article
- Adolescents' Experiences With Sequencing for Genetic Predisposition in Pediatric Cancer: A Quantitative Study.Psycho-oncology · 2026Article
- Adolescent and Young Adult Perspectives on Receiving Pathogenic or Likely Pathogenic Results in a Prospective Genomic Screening Clinical Trial.Public health genomics · 2026Article
- Global Perspectives on Managing Incidental and Secondary Findings in Genomic Testing: A Comprehensive Review of Policies, Implementation Challenges, and Stakeholder Perspectives.Annals of laboratory medicine · 2026Review
- Adolescents' and young adults' reactions to and perceived utility of carrier screening results in the context of a genomic research study.Journal of genetic counseling · 2025Article
- Decision stability among adolescents and young adults making choices about learning genomic research results.Journal of genetic counseling · 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
- 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
- Experiences of pediatric cancer patients (age 12-18 years) with extensive germline sequencing for cancer predisposition: a qualitative study.European journal of human genetics : EJHG · 2024Article
- Adolescents' and Parents' Perspectives on a Novel Decision-Making Process for Return of Results in Genomic Research.Journal of empirical research on human research ethics : JERHRE · 2023Article
- 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
- Adolescent Decision-Making Involvement in the Receipt of Genomic Testing Results.The Journal of pediatrics · 2023Article
- Studying the impact of translational genomic research: Lessons from eMERGE.American journal of human genetics · 2023Review
- Engaging Adolescents and Young Adults in Decisions About Return of Genomic Research Results: a mixed-methods longitudinal clinical trial protocol.Research square · 2023Article
- How does the genomic naive public perceive whole genomic testing for health purposes? A scoping review.European journal of human genetics : EJHG · 2023Article
- Developing video education materials for the return of genomic test results to parents and adolescents.PEC innovation · 2022Article
- Outcomes of Returning Medically Actionable Genomic Results in Pediatric Research.Journal of personalized medicine · 2022Article
- Genomic tools for health: Secondary findings as findings to be shared.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- Experiences of adolescents and their parents after receiving adolescents' genomic screening results.Journal of genetic counseling · 2022Article
Corrections and comments
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Authors and funding
4 authors.
Funding
Abstract
purposeThe American College of Medical Genetics and Genomics supports parents' opting in or out of secondary analysis of 59 genes when their child has clinical exome/genome sequencing. We explored the reasons adolescents choose to learn certain types of results and the reasons they want to involve or not involve parents in decision-making.
methodsAdolescents recruited without clinical indication were offered independent, followed by joint choices with a parent to learn genomic results. After making independent choices, adolescent/parent dyads were interviewed to explore the reasons for their choices. Interviews were audio-recorded and transcribed. The constant comparative method was used to analyze 64 purposefully selected transcripts that included 31 from adolescents who excluded some or all potential results.
resultsThree major themes informed adolescents' choices: (1) actionability of information, (2) knowledge seeking, and (3) psychological impact. Of adolescents who independently excluded some conditions (n=31), 58% changed their initial choices during the joint interview due to parental influence or improved understanding. Nearly all adolescents (98%) wanted to be involved in the decision-making process, and 53% wanted to make choices independently.
conclusionsOur findings contribute empirical evidence to support the refinement of professional guidelines for adolescents' engagement and preferences in genetic testing decisions.
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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.