Group protection in human population genetic research in developing countries: the People's Republic of China as an example.
PhD thesis, University of Glasgow.
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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.
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