在癌症遗传学中向清晰,以患者为中心的语言迈进
Saar Van Pottelberghe1, Frederik J Hes2, Maurizio Genuardi3,4
1Centre for Medical Genetics, Research Group Genetics, Reproduction and Development (GRAD), Clinical Sciences, Universitair Ziekenhuis Brussel (UZ Brussel) - Vrije Universiteit Brussel (VUB), Brussels, Belgium.
European journal of human genetics : EJHG
|November 5, 2025
概括
在临床遗传学中,精确和同情的语言至关重要. 标准化"变异"和"遗传"等术语可以提高患者的理解,减少耻辱感,并支持道德医疗整合.
科学领域:
- 临床遗传学 临床遗传学
- 生物伦理学生物伦理学
- 医学沟通 医学沟通
背景情况:
- 临床遗传学术语显著影响患者的风险感知,咨询经验和决策.
- 当前的术语可以无意中影响身份,耻辱和包容,突出语言的伦理权重.
- 越来越多地将基因检测纳入瘤学中,需要谨慎的沟通策略.
研究的目的:
- 倡导在临床遗传学传播中采用一致和道德责任的术语.
- 通过语言标准化促进包容性,心理社会意识和沟通清晰度.
- 增强患者对遗传保健的理解,信任和知情决策.
主要方法:
- 建议使用标准化的专业术语 (例如",变体"",零星/遗传").
- 建议避免使用模两可的标签 (例如"积极/消极") 并使用精确的鉴定词.
- 强调与辅导员共同构建意义,并协调跨学科的语言.
主要成果:
- 标准化术语可以促进包容性和心理社会意识,减轻恐惧和耻辱感.
- 更清晰的沟通增强了理解,并提供了情感支持,作为临床干预.
- 以患者为中心的语言对于将遗传学伦理整合到主流医疗保健中至关重要.
结论:
- 有同情心和精确的语言对于有效的临床遗传学护理至关重要,特别是在瘤学中.
- 谨慎的术语选择支持知情决策,减少耻辱,并建立信任.
- 语言是基因服务的伦理和成功实施的关键工具.
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