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首页> 外文期刊>Journal of medical ethics >Genomic sovereignty and the African promise: mining the African genome for the benefit of Africa.
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Genomic sovereignty and the African promise: mining the African genome for the benefit of Africa.

机译:基因组主权和非洲承诺:为非洲的利益而开采非洲基因组。

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摘要

Scientific interest in genomics in Africa is on the rise with a number of funding initiatives aimed specifically at supporting research in this area. Genomics research on material of African origin raises a number of important ethical issues. A prominent concern relates to sample export, which is increasingly seen by researchers and ethics committees across the continent as being problematic. The concept of genomic sovereignty proposes that unique patterns of genomic variation can be found in human populations, and that these are commercially, scientifically or symbolically valuable and in need of protection against exploitation. Although it is appealing as a response to increasing concerns regarding sample export, there are a number of important conceptual problems relating to the term. It is not clear, for instance, whether it is appropriate that ownership over human genomic samples should rest with national governments. Furthermore, ethnic groups in Africa are frequently spread across multiple nation states, and protection offered in one state may not prevent researchers from accessing the same group elsewhere. Lastly, scientific evidence suggests that the assumption that genomic data is unique for population groups is false. Although the frequency with which particular variants are found can differ between groups, such genes or variants per se are not unique to any population group. In this paper, the authors describe these concerns in detail and argue that the concept of genomic sovereignty alone may not be adequate to protect the genetic resources of people of African descent.
机译:随着许多资助计划专门支持该领域的研究,对非洲基因组学的科学兴趣正在上升。关于非洲起源材料的基因组学研究提出了许多重要的伦理问题。样品出口问题引起了人们的极大关注,整个非洲大陆的研究人员和道德委员会越来越认为这是有问题的。基因组主权的概念提出,在人群中可以发现独特的基因组变异模式,并且这些模式具有商业,科学或象征意义,需要保护以免遭到剥削。尽管它吸引了人们对样品出口日益增长的关注,但该术语仍然存在许多重要的概念问题。例如,尚不清楚由国家政府掌握对人类基因组样本的所有权是否适当。此外,非洲的种族群体经常散布在多个民族国家中,并且在一个州中提供的保护可能不会阻止研究人员在其他地方访问同一民族。最后,科学证据表明,基因组数据对于人群而言是唯一的假设是错误的。尽管发现特定变体的频率在各组之间可能不同,但是此类基因或变体本身并不是任何人群所独有的。在本文中,作者详细描述了这些问题,并认为仅靠基因组主权这一概念可能不足以保护非洲人后裔的遗传资源。

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