Frankel Leslie Ann, Pereira Stacey, McGuire Amy L
Department of Psychological, Health, and Learning Sciences, The University of Houston, Houston, Texas; and.
Center for Medical Ethics and Health Policy, Baylor College of Medicine, Houston, Texas.
Pediatrics. 2016 Jan;137 Suppl 1(Suppl 1):S24-9. doi: 10.1542/peds.2015-3731F.
Various stakeholders have issued recommendations regarding the use of genomics in pediatrics. These guidelines are driven in part by concerns about psychosocial risks of disclosing predictive genomic information during childhood. As genomic sequencing becomes more commonly used in pediatric settings, it is important to systematically study the psychosocial impact of genomic sequencing of newborns, including the impact on family dynamics. Through review of the psychological and genetic counseling literature, we identify the following 3 domains of family dynamics that have potential to be impacted by the return of genomic results during the newborn period: perceived child vulnerability, parent-child bonding, and self and partner blame. In this article, we outline the complexity of studying these psychosocial outcomes and our plan to examine them in the BabySeq Project, a randomized controlled trial in both healthy and sick infants, in which the return of genomic information will be compared with standard of care.
不同的利益相关者已就基因组学在儿科中的应用发布了建议。这些指南部分是出于对儿童期披露预测性基因组信息的心理社会风险的担忧。随着基因组测序在儿科环境中越来越普遍地使用，系统研究新生儿基因组测序的心理社会影响，包括对家庭动态的影响，非常重要。通过回顾心理和遗传咨询文献，我们确定了以下3个家庭动态领域，它们有可能在新生儿期因基因组结果的反馈而受到影响：感知到的儿童易感性、亲子关系以及自我和伴侣的自责。在本文中，我们概述了研究这些心理社会结果的复杂性，以及我们在BabySeq项目中对其进行研究的计划。BabySeq项目是一项针对健康和患病婴儿的随机对照试验，其中将基因组信息的反馈与标准护理进行比较。
