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家长对常见疾病风险的儿科遗传检测的态度。

Parents' attitudes toward pediatric genetic testing for common disease risk.

机构信息

Division of Health Outcomes and Health Behaviors, Department of Oncology, Georgetown University Medical Center, 3300 Whitehaven St, NW, Suite 4100, Washington, DC 20007, USA.

出版信息

Pediatrics. 2011 May;127(5):e1288-95. doi: 10.1542/peds.2010-0938. Epub 2011 Apr 18.

DOI:10.1542/peds.2010-0938
PMID:21502235
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3081191/
Abstract

OBJECTIVE

To describe parents' attitudes toward pediatric genetic testing for common, adult-onset health conditions and to identify factors underlying these attitudes.

PARTICIPANTS AND METHODS

Parents (n = 219) enrolled in a large, group-practice health plan were offered a "multiplex" genetic test for susceptibility to 8 common, adult-onset health conditions and completed an online survey assessing attitudes and beliefs about the risks and benefits of the test for their child, their willingness to consider having their child tested, and other psychosocial variables.

RESULTS

Parents viewed the benefits of pediatric testing to outweigh its risks (positive decisional balance) and were moderately interested in pediatric testing. Variables associated with positive decisional balance included greater interest in knowing about gene-health associations in their child, anticipation of less difficulty understanding their child's genetic health risks, and more positive emotional reactions to learning about their child's decreased health risks (adjusted R(2) = 0.33, P < .0001). Similarly, variables associated with greater parental willingness to test were being a mother (versus being a father), greater perceived risk of diseases in their child, greater interest in knowing about gene-health relationships in their child, anticipating less difficulty learning about their child's genetic health risks, anticipating more positive emotional reactions to learning about their child's decreased health risks, and positive decisional balance (adjusted R(2) = 0.57, P < .0001).

CONCLUSIONS

As genetic susceptibility testing for common, adult-onset health conditions proliferates, pediatricians should anticipate parents' interest in testing children and be prepared to facilitate informed decision making about such testing.

摘要

目的

描述父母对儿科遗传检测常见成人发病健康状况的态度,并确定这些态度的基础因素。

参与者和方法

参加大型团体实践健康计划的父母(n=219)被提供了一种针对 8 种常见成人发病健康状况的易感性的“多重”基因检测,并完成了一项在线调查,评估他们对孩子的检测风险和益处、他们是否愿意考虑让孩子接受检测以及其他心理社会变量的态度和信念。

结果

父母认为儿科检测的益处大于风险(积极决策平衡),对儿科检测有中等程度的兴趣。与积极决策平衡相关的变量包括对了解孩子基因-健康关联的更大兴趣、预期更难理解孩子的遗传健康风险、对了解孩子健康风险降低的更积极的情绪反应(调整后的 R²=0.33,P<0.0001)。同样,与父母更愿意接受检测相关的变量包括母亲(而不是父亲)、孩子患病风险更大、对了解孩子基因-健康关系的更大兴趣、预期更难学习孩子的遗传健康风险、预期更积极的情绪反应学习孩子降低的健康风险,以及积极的决策平衡(调整后的 R²=0.57,P<0.0001)。

结论

随着针对常见成人发病健康状况的遗传易感性检测的增多,儿科医生应该预计到父母对检测孩子的兴趣,并准备好促进对这种检测的知情决策。

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