中国医学伦理学2026，Vol.39Issue(5)：571-579,9.DOI:10.12026/j.issn.1001-8565.2026.05.03
人类基因组学研究的伦理治理探析
Exploration of ethical governance in human genomics research
摘要
Abstract
With the rapid development of human genomics technologies and their clinical applications,relevant ethical issues have induced complex ethical governance challenges.These challenges mainly manifest in the dilemma of reconstructing a new social contract under data open sharing,the moral conflict between the collective nature of group data and individual benefits,the problem of structural inequality under precision medicine,the risk of imbalance between costs and benefits,the dilemma of genetic modification from a eugenic perspective,and the issue of proxy consent and privacy protection.International governance practices indicate that these challenges can be addressed to some extent by improving legislation,issuing initiatives,strengthening the functions of ethics committees and corresponding institutions,and focusing on the ethicality of research projects.However,issues such as legal lag and insufficient binding force of initiatives still exist.Meanwhile,although China's ethical governance work has made continuous progress in top-level design,international exchanges and theoretical research,specialized legislation and cross-subject collaboration mechanisms still necessitate improvement.A systematic ethical governance framework requires establishing a pre-regulatory system,refining ethical review,and promoting specialized legislation and case approval systems.It is also vital to improve genomic data governance,refine cloud platform management mechanisms,and promote hierarchical governance of the data.Furthermore,it is crucial to clarify the responsibilities of the scientific research community,standardize ethical review,strengthen public communication,and build a moral community with the collaborative cooperation of the government,medical and healthcare institutions and their technical personnel,the public,and research subjects.Through the construction of an ethical governance system for human genomics research,this ensures that genomics technologies benefit humanity without transgressing ethical boundaries,thereby achieving the safety,fairness,and sustainability of their research and application.关键词
人类基因组学/精准医疗/伦理风险/伦理治理Key words
human genomics/precision medicine/ethical risk/ethical governance分类
医药卫生引用本文复制引用
李德新,杨晨..人类基因组学研究的伦理治理探析[J].中国医学伦理学,2026,39(5):571-579,9.基金项目
国家社会科学基金重大项目"爱思唯尔《科学哲学手册》翻译与研究"(18ZDA030) （18ZDA030）
山西省高等学校青年学术带头人项目"基因组学及其应用的伦理问题研究"(2024Q002) （2024Q002）
