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人类群体遗传学中的知情同意及其他伦理问题。

Informed consent and other ethical issues in human population genetics.

作者信息

Greely H T

机构信息

Stanford Law School, Stanford University, Stanford, California 94305-8610, USA.

出版信息

Annu Rev Genet. 2001;35:785-800. doi: 10.1146/annurev.genet.35.102401.091453.

Abstract

Human population genetics has entered a new era of public interest, of controversy, and of ethical problems. Population genetics raises novel ethical problems because both the individuals and the populations being studied are, in effect, "subjects" of the research. Those populations are collectively subject to possible benefits and harms from the research and have interests, somewhat different from those of the individuals, that must be considered from both ethical and practical standpoints. The chapter first describes the new setting for research in human population genetics. It then examines the most controversial ethical issue in population genetics-whether researchers must obtain the informed consent of both the individual subjects and the group as a collectivity. Other vexing issues, including special problems caused by researchers' commercial interests, confidentiality, control over research uses and materials, and return of information to the population are also considered.

摘要

人类群体遗传学已进入一个引发公众关注、争议和伦理问题的新时代。群体遗传学引发了新的伦理问题,因为所研究的个体和群体实际上都是研究的“对象”。这些群体作为一个整体可能会因研究而受益或受到伤害,并且有着与个体利益有所不同的利益,必须从伦理和实际的角度加以考虑。本章首先描述人类群体遗传学研究的新背景。然后探讨群体遗传学中最具争议的伦理问题——研究人员是否必须获得个体研究对象以及作为一个整体的群体的知情同意。还会考虑其他棘手问题,包括研究人员的商业利益、保密、对研究用途和材料的控制以及向群体反馈信息所引发的特殊问题。

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