Parents' Decisions to Screen Newborns for FMR1 Gene Expansions in a Pilot Research Project
Parents' Decisions to Screen Newborns for FMR1 Gene Expansions in a Pilot Research Project
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DOI：
10.1542/peds.2010-3078
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发表时间：
2011-06-01
期刊：
影响因子：
8
通讯作者：
Bailey, Donald B., Jr.
中科院分区：
文献类型：
--
作者：
Skinner, Debra;Choudhury, Summer;Bailey, Donald B., Jr.
目的：本研究的目的是记录新生儿筛查FMR 1基因扩增的试点研究中父母同意的比率，检查同意或拒绝的母亲的人口统计学特征，描述他们决定的原因，并讨论同意过程的伦理和社会方面。一个简短的调查被用来记录母亲的基本人口统计学数据，一个开放式的问题被用来引出父母接受或拒绝筛查的原因。对同意或拒绝筛查的母亲人数进行描述性分析，并采用逻辑回归模型预测母亲同意基于人口统计学特征进行筛查的可能性。使用内容分析法分析了决策的原因。该研究在北卡罗来纳州大学医院进行。结果：夫妇的摄取率为63%。接受率因种族/民族而异，黑人受访者不太可能接受筛查。接受的主要原因是“了解”，“对研究的信念”和“测试是最小的/没有风险。“拒绝的原因包括不想知道或担心，不是一个好时机，以及测试孩子或基因测试的问题。研究结果表明，大多数父母接受新生儿FMR 1基因扩增筛查，但接受或拒绝的决定率和原因在一定程度上取决于种族/种族因素，部分取决于父母在评估风险和利益时最重视或最担心的因素。儿科2011;127：e1455-e1463
OBJECTIVE: The goal of this study was to document rates of parental consent in a pilot study of newborn screening for FMR1 gene expansions, examine demographic characteristics of mothers who consented or declined, describe the reasons for their decision, and discuss ethical and social aspects of the consent process.METHODS: A brief survey was used to record basic demographic data from mothers and an open-ended question was used to elicit parents' reasons for accepting or declining screening. A descriptive analysis was conducted on the number of mothers who consented to or declined screening, and a logistic regression model predicted mothers' likelihood to agree to screening based on demographic characteristics. Reasons for decisions were analyzed using content analysis. The study was conducted at University of North Carolina Hospitals. A total of 2137 mothers were approached.RESULTS: The uptake rate for couples was 63%. Acceptance rates varied by race/ethnicity, with black respondents being less likely to accept screening. Primary reasons for accepting were "to know," "belief in research," and " the test was minimal/no risk." Reasons for declining included not wanting to know or worry, not being a good time, and issues with testing children or with genetic tests.CONCLUSIONS: Findings demonstrate that a majority of parents accepted newborn screening for FMR1 gene expansions, but decision rates and reasons for accepting or declining varied in part as a function of race/ethnicity and in part as a function of what parents most valued or feared in their assessment of risks and benefits. Pediatrics 2011;127:e1455-e1463