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Group protection in human population genetic research in developing countries : the People's Republic of China as an example

机译:发展中国家人口基因研究中的群体保护:以中华人民共和国为例

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摘要

This thesis is concerned with the question of whether developing countries such as the People’s Republic of China (PRC) are well prepared for the ethical and legal conduct of human population genetic research (HPGR) with specific regard to vulnerable target group protection. It highlights important issues such as whether the current frameworks of Western developed countries can provide adequate protections for target groups in human population genetic research. One fundamental question is who may suffer harm in this kind of research. Most bioethical scholars focus on individual participants but it is argued here that the interests of target groups are also seriously implicated in this kind of research. Since the target groups of HPGR are almost always vulnerable groups from isolated and rural areas of developing countries, the ethical and legal frameworks for human subject protection may need to be reconsidered in order to eliminate, or at least reduce, the vulnerability of those groups. Accordingly, given the dominance of the current ideology of Western developed countries, a critical study of vulnerable population protection is necessary to identify whether this ideology is appropriate in this context. This thesis aims to propose recommendations on the ethical and legal frameworks of biomedical research in developing countries with specific consideration of vulnerable group protection and cultural sensitivity. The PRC is used as an example to investigate current regulations for both human subject protection and group protection in developing countries. The thesis argues for an alternative model for group protection in the context of human population genetic research in developing countries. Translations of titles, authors, and publishers from Chinese works are unofficial, and the laws in this thesis are up to date at April 2011.
机译:本文关注的问题是,诸如中华人民共和国(PRC)之类的发展中国家是否为针对人口遗传研究(HPGR)的道德和法律行为做好了充分的准备,特别是针对弱势目标群体的保护。它着重指出了重要问题,例如西方发达国家的当前框架是否可以为人口遗传研究中的目标群体提供足够的保护。一个基本问题是谁可能在这种研究中遭受伤害。大多数生物伦理学学者关注的是个体参与者,但是在这里有人认为,目标人群的利益也与这种研究紧密相关。由于HPGR的目标群体几乎总是来自发展中国家偏远地区和农村地区的弱势群体,因此可能需要重新考虑保护人类的伦理和法律框架,以消除或至少减少这些群体的脆弱性。因此,鉴于西方发达国家当前的意识形态占主导地位,有必要对脆弱人群保护进行批判性研究,以确定这种意识形态在这种情况下是否合适。本文旨在就发展中国家生物医学研究的伦理和法律框架提出建议,并特别考虑弱势群体的保护和文化敏感性。以中华人民共和国为例,研究了发展中国家有关人类主体保护和群体保护的现行法规。本文提出了在发展中国家的人口遗传研究背景下的群体保护的替代模型。中国作品的标题,作者和出版者的翻译是非官方的,本文中的法律截至2011年4月。

著录项

  • 作者

    Wang Yue;

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  • 年度 2011
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  • 原文格式 PDF
  • 正文语种 English
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