ArticleJournal of empirical research on human research ethics : JERHRE2018
Adolescent and Parental Attitudes About Return of Genomic Research Results: Focus Group Findings Regarding Decisional Preferences.
Article in Journal of empirical research on human research ethics : JERHRE, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 40 papers, 2 of them syntheses 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.
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Who cites it
40 citing papers in PubMed, 2 syntheses or guidelines pooled it, 51 citations in OpenAlex.
- The full spectrum of ethical issues in pediatric genome-wide sequencing: a systematic qualitative review.BMC pediatrics · 2021Pooled it
- Return of individual research results from genomic research: A systematic review of stakeholder perspectives.PloS one · 2021Pooled it
- Impact of Genetic Testing for Cardiomyopathy on Emotional Well-Being and Family Dynamics: A Study of Parents and Adolescents.Circulation. Genomic and precision medicine · 2021Trial
- Shared Decision-Making Within Families About Returning to Sport After Recovery From Concussion: Exploring Parent and Adolescent Perspectives.The Journal of adolescent health : official publication of the Society for Adolescent Medicine · 2026Article
- 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
- Return of health research findings in Nigeria-perspective of potential research participants.BMC medical ethics · 2026Article
- Adolescent and Young Adult Perspectives on Receiving Pathogenic or Likely Pathogenic Results in a Prospective Genomic Screening Clinical Trial.Public health genomics · 2026Article
- Return of health research findings in Nigeria-perspective of potential research participants.Research square · 2025Article
- Decision-making and role preferences for receiving individual pharmacogenomic research results among participants at a Ugandan HIV research institute.BMC medical ethics · 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
- How to communicate and what to disclose to participants in a recall-by-genotype research approach: a multistep empirical study.Journal of community genetics · 2024Article
- Views of children and young adults about Whole Genome Sequencing in newborn screening: a qualitative study.European journal of human genetics : EJHG · 2024Article
- Parent and patient knowledge and attitudes about cancer predisposition syndrome genetic testing in pediatric oncology: Understanding sociodemographic and parent-child differences.Cancer reports (Hoboken, N.J.) · 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
- Parents' attitudes towards research involving genome sequencing of their healthy children: a qualitative study.European journal of human genetics : EJHG · 2024Article
- Returning Genetic Information About Risk for Alcohol Use Disorder to Adolescents: Findings of a Preliminary Qualitative Study of Precision Prevention.AJPM focus · 2024Article
- Research Participants' Preferences for Individual Results of Pharmacogenomics Research: A Case of a Ugandan HIV Research Institute.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
- 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
- Adolescent Decision-Making Involvement in the Receipt of Genomic Testing Results.The Journal of pediatrics · 2023Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 2 institutions in 1 country.
Funding
Abstract
Opportunities to participate in genomic sequencing studies, as well as recommendations to screen for variants in 59 medically actionable genes anytime clinical genomic sequencing is performed, indicate adolescents will increasingly be involved in decisions about learning secondary findings from genome sequencing. However, how adolescents want to be involved in such decisions is unknown. We conducted five focus groups with adolescents (2) and parents (3) to learn their decisional preferences about return of genomic research results to adolescents. Discussions about decisional preferences centered around three themes: feelings about receiving genomic risk information, adolescent involvement and capacity to participate in decision-making, and recommendations for parental versus collaborative decision-making. We address the contested space between parental duties to act in their children's best interests when choosing which results to return and adolescents' desires to make autonomous decisions. A collaborative decision-making approach is recommended for obtaining consent from adolescents and their parents for genome sequencing research.
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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.