Miller Victoria A, Werner-Lin Allison, Walser Sarah A, Biswas Sawona, Bernhardt Barbara A
1 The Children's Hospital of Philadelphia, PA, USA.
2 Perelman School of Medicine, University of Pennsylvania, Philadelphia, USA.
J Empir Res Hum Res Ethics. 2017 Feb;12(1):6-13. doi: 10.1177/1556264616674096. Epub 2016 Oct 20.
The goal of this study was to examine children's involvement in consent sessions for exome sequencing research and associations of involvement with provider and parent communication. Participants included 44 children (8-17 years) from five cohorts who were offered participation in an exome sequencing study. The consent sessions were audiotaped, transcribed, and coded. Providers attempted to facilitate the child's involvement in the majority (73%) of sessions, and most (75%) children also verbally participated. Provider facilitation was strongly associated with likelihood of child participation. These findings underscore that strategies such as asking for children's opinions and soliciting their questions show respect for children and may increase the likelihood that they are engaged and involved in decisions about research participation.
本研究的目的是考察儿童参与外显子组测序研究同意程序的情况，以及参与情况与医疗服务提供者和家长沟通之间的关联。研究对象包括来自五个队列的44名儿童（8至17岁），他们被邀请参与一项外显子组测序研究。同意程序进行了录音、转录和编码。在大多数（73%）程序中，医疗服务提供者试图促使儿童参与，并且大多数（75%）儿童也进行了口头参与。医疗服务提供者的促进与儿童参与的可能性密切相关。这些发现强调，诸如征求儿童意见和询问他们问题等策略体现了对儿童的尊重，并且可能增加他们参与研究参与决策并真正投入其中的可能性。
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