Adolescents' and Parents' Genomic Testing Decisions: Associations With Age, Race, and Sex
Adolescents' and Parents' Genomic Testing Decisions: Associations With Age, Race, and Sex
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DOI：
10.1016/j.jadohealth.2019.08.028
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发表时间：
2020-03-01
影响因子：
7.6
通讯作者：
Prows, Cynthia A.
中科院分区：
文献类型：
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作者：
Myers, Melanie F.;Martin, Lisa J.;Prows, Cynthia A.
目的：青少年将越来越多地参与决定基因组结果的返回。我们调查了青少年和父母关于学习青少年实际基因组研究结果的决定，以及选择是否与参与者的人口统计因素相关。方法：通过传单、社交媒体、员工电子邮件和儿科医院的诊所就诊招募13至17岁的青少年和父母(双亲)。Diads使用一种决策工具来独立选择他们想要了解的青少年疾病的类别。然后他们聚在一起讨论他们的独立决定，并做出最终的联合决定。根据可预防、可治疗、成人发病情况和携带者状态对病情进行分类。参与者可以通过在每个类别中包括或排除条件来做出细粒度的选择。分类选择被压缩为“聚合选择”，以了解全部或不全部结果。结果：163个二元完成了研究访问。青少年比他们的父母更不可能独立选择学习所有结果(64.4%比76.1%；p=.0056)。与儿子相比，父母更不可能独立选择为女儿学习所有结果(优势比=.41，95%可信区间.18-.96；p=.032)。黑人青少年比白人青少年更不可能独立选择学习所有结果(优势比=.22；95%可信区间.08-.55；p=.0015)。在共同做出决定后，70.6%的双亲选择学习所有结果。结论：青少年独立地想要学习的基因组信息比他们的父母少。尽管青少年在没有父母许可的情况下不能合法地做出基因检测决定，但青少年应该参与决定基因组结果的返回。(C)2019年青少年健康与医学学会。版权所有。
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. (C) 2019 Society for Adolescent Health and Medicine. All rights reserved.