人类基因组学研究的伦理治理探析OA

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.