International Genomics Research Involving the San People

In Doris Schroeder, Julie Cook, François Hirsch, Solveig Fenet & Vasantha Muthuswamy (eds.), Ethics Dumping: Case Studies from North-South Research Collaborations. New York: Springer. pp. 15-22 (2017)
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Abstract

In 2010 an international genomic research project entitled “Complete Khoisan and Bantu genomes from southern Southern Africa was published in Nature amidst wide publicity. The research aimed to examine the genetic structure of “indigenous Hunter gatherers peoples” selected from Namibia, and to compare the results with “Bantu from southern Southern Africa, including Nobel peace prize winner Archbishop Desmond Tutu. Four San individuals, the eldest in their respective communities, were chosen for genome sequencing, and the published article analysed many aspects of the correlations, differences and relationships found in the single-nucleotide polymorphisms within the sequenced genomes. A supplementary document published with the paper contained numerous conclusions and details that the San regarded as private, pejorative, discriminatory and inappropriate. The San leadership met with the authors in Namibia soon after Publication, asking why they as leaders had not been approached for permission in advance, and enquiring about the Informed consent process. The authors refused to provide details about the Informed consent process, apart from stating that they had received video-recorded consents in each case. They defended their denial of the right of the San leadership to further information on the grounds that the research project had been fully approved by ethics committees/Ethics committee review boards in three countries, and that they had complied with all the relevant requirements. The San leadership wrote to Nature, expressing their anger at the inherent insult and lack of Respect displayed by the process. This case study details the most serious aspects of the perceived Exploitative nature of the research, and the San response.

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