上海市医疗机构基因临床研究与应用的现状分析

?????? 目的 分析上海市基因临床研究与应用中存在或可能存在的伦理问题。方法 对上海市22所医疗机构进行问卷调查,并对相关人员进行关键知情者访谈。结果 被调查的上海市医疗机构中有7所开展基因工作,2011年公立医院基因检测平均服务量比2009年增长1.75倍;31%的公立医院从事基因工作的人员在近一年内参加过伦理培训,体检机构未向员工提供伦理培训;3所开展基因检测的机构未要求签署知情同意书。结论 上海市基因临床研究与应用发展较快但应用不广,应进一步促进基因检测技术的临床应用,完善基因临床应用的伦理规范。

Study on Clinical Genetic Trials and Practice in Medical Institutions in Shanghai

?????? Objective To analyze existing or potential ethical issues in clinical genetic trials and practice. Methods A questionnaire survey of 22 medical institutions in Shanghai and key informant interviews were conducted. Results 7 medical institutions had clinical genetic trials or services; the average number of genetic tests provided by public hospitals in 2011 was 1.75 times as high as that in 2009; 31% persons who worked on clinical genetic trials and/or services in the public hospitals had ethics training in the past year and no health examination institutions provided ethics training to their employees; and 3 institutions conducting clinical genetic testing did not require informed consent before providing them. Conclusion Clinical genetic trials and practice have developed rapidly in recent years but are still not widely used in Shanghai. Genetic testing should be promoted to apply in clinics, and their application should be regulated according to ethical norms and criteria.