PAPER Genomic sovereignty and the African promise: mining the African genome for the benefit of Africa
PAPER Genomic sovereignty and the African promise: mining the African genome for the benefit of Africa
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DOI：
10.1136/medethics-2011-100448
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发表时间：
2012-08-01
影响因子：
4.1
通讯作者：
Pepper, Michael
中科院分区：
文献类型：
--
作者：
de Vries, Jantina;Pepper, Michael
非洲对基因组学的科学兴趣正在上升，有一些资助计划专门用于支持这一领域的研究。对非洲血统材料的基因组学研究引发了许多重要的伦理问题。一个突出的问题与样本出口有关，整个非洲大陆的研究人员和伦理委员会越来越多地认为这是一个问题。基因组主权的概念提出，可以在人类群体中发现独特的基因组变异模式，这些模式具有商业、科学或象征价值，需要保护以防止剥削。虽然作为对越来越多的关于样品出口的关切的回应，这个词很有吸引力，但是这个词有一些重要的概念问题。例如，人类基因组样本的所有权归属于国家政府是否合适尚不清楚。此外，非洲的少数民族群体经常分布在多个民族国家，在一个国家提供的保护可能不会阻止研究人员在其他地方访问同一群体。最后，科学证据表明，基因组数据对人口群体是独特的假设是错误的。虽然发现特定变异的频率在不同群体之间有所不同，但这些基因或变异本身并不是任何群体所独有的。在本文中，作者详细描述了这些担忧，并认为仅基因组主权的概念可能不足以保护非洲人后裔的遗传资源。
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.