International Genomics Research Involving the San People

Abstract

Collective permission must be obtained for all research to be carried out on San individuals or communities. • The San Council is the elected organization in South Africa mandated to engage in this process with researchers. • The San have since developed a San Code of Research Ethics (San Council 2017) that has to be completed by all prospective researchers. This code contains a number of requirements relating to the need for research to be both respectful and useful to the San peoples, including: –early identification of research useful to the San – joint development, where appropriate, of design, content and methodology of all aspects of the research – full details provided in advance of all aspects of the research, including (potential) benefits to the San – commitment to pre-publication consultation, where appropriate, and post-publication *** In 2010 an international genomic research project entitled “Complete Khoisan and Bantu genomes from southern Africa” was published in Nature amidst wide publicity (Schuster et al 2010). The research aimed to examine the genetic structure of “indigenous hunter-gatherer peoples” selected from Namibia, and to compare the results with “Bantu from 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 (SNPs) (A single-nucleotide polymorphism is a variation in a single nucleotide that occurs at a specific position in a genome, where each variation is present to some appreciable degree within a population) 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 (Hayes 2011). 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/institutional review boards in three countries, (names of committees given to editors of this book) 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 (Ngakaeaja 2011b). This case study details the most serious aspects of the perceived exploitative nature of the research, and the San response.