Adolescents' and Parents' Perspectives on a Novel Decision-Making Process for Return of Results in Genomic Research.
Adolescents' and Parents' Perspectives on a Novel Decision-Making Process for Return of Results in Genomic Research.
复制标题
青少年对基因组研究结果回报的新决策过程的观点。
DOI：
10.1177/15562646231190826
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发表时间：
2023-10
影响因子：
1.3
通讯作者：
Lipstein, Ellen A.
中科院分区：
文献类型：
--
作者：
Matula, Kelly A.;Blumling, Amy A.;Myers, Melanie F.;McGowan, Michelle L.;Lipstein, Ellen A.
关键词：
为了了解他们是否发现两步决策过程有帮助以及为什么，参与研究基因组检测结果返回的研究的双亲被问及他们的决策经验。对答复进行了定性编码，并使用专题分析进行了分析。青少年和家长发现联合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，而父母既重视青少年的独立性，也重视父母的独立性。共同决策使各方能够听取对方的意见。有些人认为联合决策无关紧要，但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原因发现两步决策过程是有用的。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。
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.
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DOI：
10.1038/gim.2011.25
发表时间：
2012-03
期刊：
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子：
--
作者：
通讯作者：
--
影响因子：
3.2
作者：
Hsieh, HF;Shannon, SE
通讯作者：
Shannon, SE
DOI：
10.1038/gim.2013.73
发表时间：
2013-07
期刊：
Genetics in medicine : official journal of the American College of Medical Genetics
影响因子：
--
作者：
通讯作者：
--
影响因子：
2.1
作者：
Sabatello, Maya;Appelbaum, Paul S.
通讯作者：
Appelbaum, Paul S.
影响因子：
3.5
作者：
Sapp, J. C.;Dong, D.;Biesecker, B. B.
通讯作者：
Biesecker, B. B.