美国对受试者研究中特殊挑战的观点:遗传研究中的伦理问题  

US Perspective on Special Challenges in Human Subjects Investigation: Ethical Issues in Genetic Research

作　　者：Patricia Marshall 徐白羽[2] 

机构地区：[1]美国Case Western Reserve大学医学院 [2]北京大学医学部外语部

出　　处：《医学与哲学》2002年第6期8-12,共5页Medicine and Philosophy

摘　　要：虽然基因研究比其他任何时候更有望了解人类疾病及其在世界各类人群中的表现形式 ,并且对预防和治疗疾病产生了深远影响 ,但是它的应用也会极大地改变我们对个体及群体特征。从个体属性及群体意识的角度来看 ,特别是关于知情同意这个议题 ,我们会非常清楚地看到遗传研究所面临的挑战。阐述了在美国遗传研究所面临的挑战 ,讨论了遗传研究进行过程中出现的一系列伦理问题 ,如 :如何正确执行知情同意 ;研究中可能对受试者产生的标签和歧视行为 ;遗传流行病研究中出现的伦理问题以及需要关注的社区和民族的伦理问题 ;对人类组织样本的储存和使用中所出现的伦理问题。强调了知情同意和社区参与遗传研究及在研究中社区代表性的重要性 ;Although genomic research holds the promise of a greater understanding of human disease and its expression in populations throughout the world and has a profound impact on the prevention and treatment of disease, applications of genetic research also are dramatically changing our notions of self and group identity. Challenges related to genetic research become highly visible when viewed through the lens of self-identity and group consciousness, particularly in regard to informed consent. This article briefly review ethical challenges faced in the United States associated with genetic research, take into consideration a variety of ethical issues arisen from the process of implementation of genomic research, which include application of sound informed consent, stigmatization and discrimination, implementation of genetic epidemiology and its related community or ethnic concerns, and the ethical issues resulted from stored human tissue samples. The sound application of informed consent, the involvement of community and community representation in the genomic research is highly valued. This article strongly advocates the establishment of a strong foundation for transnational cooperation will facilitate the successful resolution of the complicated dilemmas that arise in genetic research.

关 键 词：遗传研究 知情同意 伦理问题 

分 类 号：R－052[医药卫生]