父母对在NICU进行基因检测的有用性的看法
Katharine Press Callahan1, Rebecca Mueller2, Steven Joffe1
1The Children's Hospital of Philadelphia, Philadelphia, PA; Department of Medical Ethics and Health Policy, The Perelman School of Medicine at the University of Pennsylvania, Philadelphia, PA.
概括
父母对新生儿重症监护室基因测试的看法显示出矛盾,因为父母考虑了医疗治疗之外的多种背景. 遗传信息的实用性是复杂的,影响了关于护理和家庭福祉的决定.
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:
- 以前的研究表明,父母对新生儿重症监护室 (NICU) 的基因检测进行研究的评估是积极的.
- 然而,一些数据表明,父母对基因测试有用性的看法更为多样化.
研究的目的:
- 探索家长对临床 (非研究) 基因测试在婴儿集中治疗室的有用性和有害性的信仰.
- 了解影响家长对遗传检测的决定的多方面的考虑因素.
主要方法:
- 进行了半结构化采访,与36名新生儿的43名父母进行了临床遗传测试建议.
- 探讨了父母对遗传信息在各种环境中的有用性的观点.
主要成果:
- 父母确定了五个解决遗传信息问题的背景:治疗,应对,育儿,预后和存在.
- 大多数家长考虑了多种背景,导致对基因测试的好处产生矛盾.
- 与研究背景相比,在临床环境中,父母的矛盾感可能更高.
结论:
- 父母对新生儿重症监护室遗传信息实用性的矛盾比以前报告的更为明显.
- 临床基因测试的讨论应该涵盖更广泛的背景,而不仅仅是直接的医疗问题.
- 未来的研究应该将不同的家长观点和多种解决问题的背景纳入实用措施中.
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