Dataset Information

Adolescents' and Parents' Genomic Testing Decisions: Associations With Age, Race, and Sex.

ABSTRACT:

Purpose

Adolescents 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.

Methods

Adolescents 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.

Results

Study 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.

Conclusions

Adolescents 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.

SUBMITTER: Myers MF

PROVIDER: S-EPMC7007858 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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Publications

Adolescents' and Parents' Genomic Testing Decisions: Associations With Age, Race, and Sex.

Myers Melanie F MF Martin Lisa J LJ Prows Cynthia A CA

The Journal of adolescent health : official publication of the Society for Adolescent Medicine 20191101 3

<h4>Purpose</h4>Adolescents 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.<h4>Methods</h4>Adolescents 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 decisio ...[more]

PMID: 31685375

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Project description:BackgroundAccidental injury and homicide, relatively common among adolescents, often follow risky behaviors; those are done more by boys and by adolescents with greater behavioral disinhibition (BD).HypothesisNeural processing during adolescents' risky decision-making will differ in youths with greater BD severity, and in males vs. females, both before cautious behaviors and before risky behaviors.Methodology/principal findings81 adolescents (PATIENTS with substance and conduct problems, and comparison youths (Comparisons)), assessed in a 2 x 2 design (PatientsComparisons x Male:Female) repeatedly decided between doing a cautious behavior that earned 1 cent, or a risky one that either won 5 or lost 10 cents. Odds of winning after risky responses gradually decreased. Functional magnetic resonance imaging captured brain activity during 4-sec deliberation periods preceding responses. Most neural activation appeared in known decision-making structures. PATIENTS, who had more severe BD scores and clinical problems than Comparisons, also had extensive neural hypoactivity. Comparisons' greater activation before cautious responses included frontal pole, medial prefrontal cortex, striatum, and other regions; and before risky responses, insula, temporal, and parietal regions. Males made more risky and fewer cautious responses than females, but before cautious responses males activated numerous regions more than females. Before risky behaviors female-greater activation was more posterior, and male-greater more anterior.Conclusions/significanceNeural processing differences during risky-cautious decision-making may underlie group differences in adolescents' substance-related and antisocial risk-taking. Patients reported harmful real-life decisions and showed extensive neural hypoactivity during risky-or-cautious decision-making. Males made more risky responses than females; apparently biased toward risky decisions, males (compared with females) utilized many more neural resources to make and maintain cautious decisions, indicating an important risk-related brain sexual dimorphism. The results suggest new possibilities for prevention and management of excessive, dangerous adolescent risk-taking.

Dataset Information

Adolescents' and Parents' Genomic Testing Decisions: Associations With Age, Race, and Sex.

Purpose

Methods

Results

Conclusions

Publications

Adolescents' and Parents' Genomic Testing Decisions: Associations With Age, Race, and Sex.

Similar Datasets

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