协和医学杂志

2018, v.9(06) 556-560

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如何做好我国少数民族人群遗传资源样本采集的知情同意
How to Enhance the Informed Consent During the Sample Collection of Human Genetic Resources among the Ethnic Groups in China

满秋红;薛江莉;杨亚军;
MAN Qiu-hong;XUE Jiang-li;YANG Ya-jun;The People's Hospital of Suzhou National New & Hi-tech Development Zone;Taizhou Insititue of Health Sciences,Fudan University;School of Life Sciences,Fudan University;

摘要(Abstract):

我国人口资源丰富,环境异质性强,各民族人群从体质特征到生理数据、从遗传表型到基因型均丰富多样,为开展地方疾病、家族谱系疾病、人群迁移以及基因人类学研究提供了最好资源。在进行人类遗传资源研究之前,基于伦理学原则,按照相关行政管理程序,做好人类遗传资源样本采集知情同意非常重要。然而,少数民族文化习俗、知识背景、民族信仰等因素的差别,给人类遗传资源样本采集知情同意的签署带来了挑战。本文就开展我国少数民族地区人群遗传资源样本采集时,有关知情同意书签署应该注意的问题进行阐述,主要包括知情同意模式选择、少数民族知情同意的程序、知情同意应充分考虑民族文化的特性和相关禁忌等内容,以供科研工作者借鉴。
China is a country with a large population,rich resources and conspicuous environmental heterogeneity. The 56 nationalities of China boast great varieties in physiques,physiological data,hereditary phenotype,and genotype. Therefore,they are ideal resources for researches on endemic diseases,family disease genealogy,population migration,and genetic anthropology. However,due to the discrepancy in areas such as cultural custom,knowledge background,and ethical religion,the sample collection of human genetic resources and signing of informed consent are facing great challenges. This paper focused on the questions concerning the signing of informed consent that we should pay attention to during the sample collection of human genetic resources in the areas inhabited by minority nationalities,and expounded ten questions including "mode choice of informed consent", "procedures of informed consent in ethnic minorities", "informed consent should fully embody the characteristics and taboos of ethnic culture",hopefully,to provide references for researchers in this field.Researchers should abide by related procedures of administration management in accordance with ethical principles,respect cultural customs and ethnic religions of ethnic minority groups,and thereby make sure to complete the informed consent during sample collection of human genetic resources in ethnic minority groups in China.

关键词(KeyWords): 少数民族;人类遗传资源样本;知情同意
ethnic groups;human genetic resources;informed consent

Abstract:

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基金项目(Foundation): 国家重点研发计划(2016YFF0202301、2016YFC1201701)

作者(Author): 满秋红;薛江莉;杨亚军;
MAN Qiu-hong;XUE Jiang-li;YANG Ya-jun;The People's Hospital of Suzhou National New & Hi-tech Development Zone;Taizhou Insititue of Health Sciences,Fudan University;School of Life Sciences,Fudan University;

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