基因检测中偶然发现信息披露的伦理分析
Ethical Analysis on the Information Disclosure of Incidental Findings in Genetic Testing
王瑾瑜 1杨阳2
作者信息
- 1. 大连医科大学人文与社会科学学院,辽宁大连,116044
- 2. 大连医科大学人文与社会科学学院,辽宁大连,116044;大连医科大学杂志社,辽宁大连,116044
- 折叠
摘要
随着基因检测技术在临床诊疗中的广泛应用,与初始检测目的无关但可能对患者健康产生临床意义的偶然发现日益受到关注.医生是否应该披露偶然发现,何时披露,向谁披露,怎样披露成为基因检测中亟待解决的伦理难题.通过辨析偶然发现的概念及其分类,分析偶然发现信息披露中患者隐私保护、知情选择、风险获益评估的伦理挑战,并揭示利益相关主体的道德权利与责任.提出在进一步规范临床基因检测中偶然发现信息披露程序的同时,还需要全面加强遗传咨询师专业队伍建设,促进我国临床遗传咨询的发展,完善遗传信息保护相关法律法规,以更好地保护患者隐私权,维护患者健康权益.
Abstract
With the widespread application of genetic testing in clinical setting,incidental findings that are testing results of clinical significance in genetics for patient health but not apparently relevant to a diagnostic indication for which the sequencing test was ordered,receive more and more attentions.Whether clinical laboratories or physicians should disclose incidental findings,when to disclose them,to whom to disclose them,and how to disclose them have become theoretical and practical ethical challenges.By distinguishing the concept and classification of incidental findings,this article focuses on analyzing the ethical challenges of patient privacy,informed consent,and risk benefit assessment in disclosure of incidental findings,and revealing the moral rights and re-sponsibilities of the stakeholders.While further standardizing the disclosure procedures for incidental findings in clinical setting,it is also necessary to comprehensively strengthen the construction of the professional team of genetic counselors,promote the develop-ment of clinical genetic counseling in China,and refine relevant laws and regulations of genetic information protection,in order to better protect patient privacy and safeguard patient health.
关键词
医学基因检测/偶然发现/信息披露Key words
Medical Genetic Testing/Incidental Finding/Information Disclosure引用本文复制引用
出版年
2024
NETL
NSTL
万方数据