我国基因检测伦理监管的政策文本分析研究——基于政策工具的视角

Research on Policy Text Analysis of Ethical Regulation of Genetic Testing in China:Based on the Perspective of Policy Tools

基因检测在数据共享与安全、隐私保护、多主体利益分享等方面提出了伦理监管挑战。运用政策内容量化分析法,以供给型、环境型和需求型政策工具为X维度,以伦理价值、伦理规范、伦理利益为Y维度,选取分析1988年4月~2022年3月间我国出台的197份基因检测伦理监管政策文本,结果表明存在政策工具结构性使用不平衡,导致政策缺乏协调性和完整性;政府主体部门协作性较少;政策末梢漏洞等问题。基于此,提出政策建议:促进基因检测伦理监管平衡发展;基于伦理责任促进协同伦理监管;夯实相关伦理监管政策落实的保障机制;完善基因检测行业制度和规范。

Genetic testing poses ethical regulatory challenges in data sharing and security,privacy protection,multi-agent interest sharing,etc.By using the quantitative analysis method of policy content,this study selects the supply,environment and demand policy tools as the X dimension and the ethical value,ethical norms and ethical interests as the Y dimension,and selects 197 ethical regulatory policy texts for genetic testing issued by China from 1988.4 to 2022.3.The results show that the structural use of policy tools is unbalanced,resulting in a lack of coordination and integrity of policies;the main government departments have less cooperation;problems in the implementation of policies at the primary level are also exposed.Based on this,the following policy suggestions are put forward:to promote the balanced development of ethical regulation of genetic testing;promote collaborative ethical regulation based on ethical responsibility;strengthen the safeguard mechanism for the implementation of relevant ethical supervision policies;and improve the regulations and norms of the genetic testing industry.