父母拒绝对重症新生儿进行基因检测的频率和原因
Katharine Press Callahan1,2, Rebecca Mueller2, Karen Crew1
1The Children's Hospital of Philadelphia, Philadelphia, PA.
Genetics in medicine open
|January 17, 2025
概括
21%的家长拒绝对生病的新生儿进行基因检测. 关键原因包括被认为无关紧要和害怕不受欢迎的信息,影响未来的家长咨询.
科学领域:
- 医学遗传学 医学遗传学
- 新生儿护理 新生儿护理
- 生物伦理学生物伦理学
背景情况:
- 虽然家长对新生儿基因检测的支持很高,但由于不明原因,部分子组的支持下降.
- 了解父母的决策对于有效的遗传咨询和知情同意至关重要.
研究的目的:
- 确定父母拒绝对生病新生儿进行基因检测的比例.
- 描述拒绝测试的父母的临床和人口因素.
- 为了分类父母拒绝基因检测的决定背后的理由.
主要方法:
- 对新生儿临床和人口统计数据的医疗记录的回顾性审查.
- 同意和拒绝基因测试的父母之间的特征比较.
- 与拒绝测试以确定他们的推理的父母进行定性采访.
主要成果:
- 21% (51/247) 的家长拒绝对新生儿进行推的基因检测.
- 拒绝的主要理由包括感知不相关性 (83%) 和担心不受欢迎的信息 (63%).
- 拒绝测试的家长更有可能生育出产前诊断或先天异常的孩子,以及私人保险.
结论:
- 家长拒绝新生儿基因测试的原因是对益处和危害的明确评估.
- 未来的咨询应该解决家长对相关性和意外发现的可能性的担忧.
- 纳入这些观点可以改善沟通和支持父母做出基因测试决定.
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