根据美国"21世纪疗法法法案",解决获取基因测试的语言障碍
Lucas Pereira1, Philip D Connors2, Maggie Ruderman1
1Section of Hematology and Medical Oncology, Department of Medicine, Boston University Chobanian and Avedisian School of Medicine, Boston, Massachusetts, USA.
Journal of genetic counseling
|April 30, 2025
概括
"21世纪治疗法"允许患者获得遗传检测结果,但对英语水平有限的人来说,语言障碍会造成不平等. 遗传咨询师对于确保所有患者平等获得遗传医疗保健至关重要.
科学领域:
- 遗传学 遗传学 是一个
- 医疗保健政策 医疗保健政策
- 健康 公平 卫生 公平
背景情况:
- "21世纪治疗法"要求患者立即访问电子健康记录,包括遗传检测结果.
- 这项立法旨在加强患者的获取权,并赋予个人在医疗保健决策中的权力.
- 然而,在结果传播中的语言一致性方面存在重大实施差距.
研究的目的:
- 突出语言障碍的关键问题,以获取有限英语水平 (LEP) 患者的遗传检测结果.
- 要强调缺乏语言一致性如何加剧医疗保健不平等,并可能导致不良结果.
- 倡导遗传咨询师在解决这些差异和促进公平获得遗传医疗保健方面的作用.
主要方法:
- 分析"21世纪治疗法"对患者获取遗传信息的影响.
- 检查LEP患者在理解主要用英语提供的遗传测试结果时所面临的挑战.
- 关于语言障碍在医疗保健中的影响和遗传咨询的作用的文献综述.
主要成果:
- 根据"治疗法"即时访问基因检测结果往往与语言不一致,这对LEP患者构成了障碍.
- 这种缺乏一致性可能导致误解,误诊和不适当的医疗管理.
- 这个问题反映了一个更广泛的系统性挑战,剥夺了LEP患者完全参与他们的遗传医疗保健的权利.
结论:
- 迫切需要可访问,文化敏感和语言一致的基因测试和咨询服务.
- 遗传咨询师处于一个独特的位置,可以弥合语言差距,并倡导平等的获取.
- 实施解决语言需求的解决方案对于实现"治疗法案"对所有患者的承诺至关重要.
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