通过将遗传信息集成到电子健康记录中,揭示错误的亲属关系
Sivan Tamir1,2, Sivan Gazit1, Shiri Sivan1
1Kahn Sagol Maccabi (KSM) Research & Innovation Center, Maccabi Healthcare Services, Tel Aviv, Israel.
Bioethics
|June 28, 2024
概括
将遗传信息 (GI) 整合到电子健康记录 (EHR) 中可能会揭示错误的家属关系. 伦理考虑和患者自主性对于管理GI访问和同意在EHR中至关重要.
科学领域:
- 基因组医学是基因组医学.
- 生物伦理学生物伦理学
- 医疗信息学 医疗信息学
背景情况:
- 将基因组信息 (GI) 整合到电子健康记录 (EHR) 中正在增加.
- 在EHR中可访问的GI为医疗保健,临床决策和健康管理提供了好处.
- 通过患者门户网站进行无限制的GI访问给患者带来了与知识相关的风险.
研究的目的:
- 通过自动GI集成到EHR中,探索无意中透露错误归因的亲属关系的风险.
- 确定这些发现对成年患者的临床和伦理影响.
- 提出一个道德框架,将地理标志纳入EHR.
主要方法:
- 临床影响的分析,包括医生与患者的互动和遗传素养.
- 审查道德论点赞成和反对披露错误归因的亲属关系 (MP).
- 开发一种基于自主性的方法,具有细微的同意选项.
主要成果:
- 临床影响涉及医生-病人动态的改变和需要增强的遗传沟通技能.
- 伦理辩论包括患者的自主权和知情权与不知情权.
- 家庭关系和披露后的担忧是重要的伦理考虑因素.
结论:
- 将GI纳入电子健康记录的伦理整合需要仔细考虑患者的自主权和不知情权.
- 一个拟议的解决方案涉及细微的同意选项,包括"遗传无知选项".
- 这种方法使患者能够在EHR系统中控制他们的遗传和家族叙事.
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