Adolescents' and Parents' Perspectives on a Novel Decision-Making Process for Return of Results in Genomic Research.

IF 1.7 4区 哲学 Q2 ETHICS
Kelly A Matula, Amy A Blumling, Melanie F Myers, Michelle L McGowan, Ellen A Lipstein
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引用次数: 0

Abstract

To understand whether they found a two-step decision process helpful and why, adolescent-parent dyads participating in a study investigating return of genomic testing results were asked about their decision-making experience. Responses were qualitatively coded and analyzed using thematic analysis. Adolescents and parents found both joint and independent decision-making stages helpful. Regarding independent decision-making, adolescents appreciated exercising independence, while parents valued both adolescent and parental independence. Joint decision-making allowed each to hear the other's viewpoints. Some found joint decision-making irrelevant but recognized it might help others. Overall, adolescents and parents had similar reasons for finding the two-step decision-making process helpful. Our findings support using such a process for engaging parents and adolescents in challenging research and clinical decisions.

青少年和父母对基因组研究结果返回的新决策过程的看法。
为了了解他们是否发现两步决策过程有帮助以及为什么,参与一项调查基因组检测结果返回的研究的青少年父母二人组被问及他们的决策经验。对答复进行了定性编码,并使用主题分析进行了分析。青少年和父母发现共同和独立决策阶段都很有帮助。关于独立决策,青少年赞赏行使独立性,而父母则重视青少年和父母的独立性。共同决策使双方都能听取对方的观点。一些人认为联合决策无关紧要,但也认识到这可能有助于其他人。总的来说,青少年和父母有相似的理由认为两步决策过程是有益的。我们的研究结果支持使用这样一个过程让父母和青少年参与具有挑战性的研究和临床决策。
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来源期刊
CiteScore
3.50
自引率
7.70%
发文量
30
审稿时长
>12 weeks
期刊介绍: The Journal of Empirical Research on Human Research Ethics (JERHRE) is the only journal in the field of human research ethics dedicated exclusively to empirical research. Empirical knowledge translates ethical principles into procedures appropriate to specific cultures, contexts, and research topics. The journal''s distinguished editorial and advisory board brings a range of expertise and international perspective to provide high-quality double-blind peer-reviewed original articles.
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