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退出生物样本库参与情况的比较研究

Withdrawing from participating in a biobank--a comparative study.

作者信息

Gertz Renate

机构信息

Arts and Humanities Research Council (AHRC), Research Centre for Studies in Intellectual Property and Technology Law, School of Law, University of Edinburgh.

出版信息

Eur J Health Law. 2008 Dec;15(4):381-9. doi: 10.1163/157180908x338269.

Abstract

The development of biobanks worldwide is considered to hold great promise for the provision of new insights into the connection between genes and environment and to have a positive impact on public health. There is, however, a constant tension between the rights of individuals on one hand and the progress of research on the other hand. One of the rights developed to protect the autonomy and free will of participants and reflecting the basic principles regulating medical research according to the Nuremberg Code and the Declaration of Helsinki is the right to be able to withdraw from the biobank at any time as an expression of the participant's free will and autonomy. There are two important problems to withdrawing, namely the 'what' and 'when'--what can be withdrawn and when can it be withdrawn.

摘要

全球生物样本库的发展被认为有望为深入了解基因与环境之间的联系提供新的见解,并对公众健康产生积极影响。然而,一方面是个人权利,另一方面是研究进展,两者之间始终存在矛盾。为保护参与者的自主权和自由意志而确立的一项权利,它体现了根据《纽伦堡法典》和《赫尔辛基宣言》规范医学研究的基本原则,即参与者有权随时退出生物样本库,以此表达其自由意志和自主权。退出存在两个重要问题,即“退出什么”和“何时退出”——可以退出什么以及何时可以退出。

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