ArticleThe Journal of adolescent health : official publication of the Society for Adolescent Medicine2020
Adolescents' and Parents' Genomic Testing Decisions: Associations With Age, Race, and Sex.
Article in The Journal of adolescent health : official publication of the Society for Adolescent Medicine, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers.
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
20 citing papers in PubMed.
- Lessons Learned in Clinical Trial Recruitment: A Partnership Between a Genomic Research Study and the Discover Together Biobank.Biopreservation and biobanking · 2026Review
- 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
- Representation is power: traditional, hybrid, and digital recruitment results from a non-randomized clinical trial engaging adolescents.NPJ digital medicine · 2025Article
- 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
- 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
- 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
- Current Practices in Pharmacogenomics.Pediatric clinics of North America · 2023Review
- Adolescent Decision-Making Involvement in the Receipt of Genomic Testing Results.The Journal of pediatrics · 2023Article
- Engaging Adolescents and Young Adults in Decisions About Return of Genomic Research Results: a mixed-methods longitudinal clinical trial protocol.Research square · 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
- Experiences of adolescents and their parents after receiving adolescents' genomic screening results.Journal of genetic counseling · 2022Article
- The reckoning: The return of genomic results to 1444 participants across the eMERGE3 Network.Genetics in medicine : official journal of the American College of Medical Genetics · 2022Article
- Genomic Health Literacy Interventions in Pediatrics: Scoping Review.Journal of medical Internet research · 2021Article
- The Underdeveloped "Gift": Ethics in Implementing Precision Medicine Research.The American journal of bioethics : AJOB · 2021Article
- Participant choices for return of genomic results in the eMERGE Network.Genetics in medicine : official journal of the American College of Medical Genetics · 2020Article
- Article
- Decisional conflict among adolescents and parents making decisions about genomic sequencing results.Clinical genetics · 2020Article
Corrections and comments
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Authors and funding
3 authors.
Funding
Abstract
purposeAdolescents will increasingly be involved in decisions about the return of genomic results. We examined adolescents' and parents' decisions about learning actual genomic research results for the adolescent and whether choices were associated with participants' demographic factors.
methodsAdolescents aged between 13 and 17 years and a parent (dyads) were recruited through flyers, social media, employee emails, and clinic visits at a pediatric hospital. Dyads used a decision tool to independently choose the categories of conditions they wanted to learn about the adolescent. They then came together to discuss their independent decisions and make final joint decisions. Conditions were categorized by preventability, treatability, adult-onset conditions, and carrier status. Participants could make granular choices by including or excluding conditions in each category. Categorical choices were collapsed into the "aggregate choice" to learn all or not all results.
resultsStudy visits were completed by 163 dyads. Adolescents were less likely than their parents to independently choose to learn all results (64.4% vs. 76.1%; p = .0056). Parents were less likely to independently choose to learn all results for their daughters than their sons (odds ratio = .41, 95% confidence interval .18-.96; p = .032). Black adolescents were less likely to independently choose to learn all results than white adolescents (odds ratio = .22; 95% confidence interval .08-.55; p = .0015). After making joint decisions, 70.6% of dyads chose to learn all results.
conclusionsAdolescents independently wanted to learn less genomic information than their parents. Although adolescents cannot legally make genomic testing decisions without parental permission, adolescents' should be engaged in decisions about the return of genomic results.
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