Existing literature often describes indigenous peoples’ encounters with human genomic science as characterized by underrepresentation and exploitation. For underrepresentation, indigenous peoples are often excluded from human genomic research, meaning that data on and about them is unavailable from datasets and analysis thus locking them out of enjoyment of the benefits of genomic science. Conversely, exploitation implies misappropriation and misuse of their human genetic data and resources collected by researchers, governments and private companies for studies and projects that do not benefit them and also that offend their cultural beliefs. The concept of indigenous sovereignty has emerged as a bulwark against underrepresentation and exploitation as it recognizes the inherent sovereignty that indigenous peoples possess over their human genetic resources and data. It vests power and authority in indigenous peoples collectively to control access to, use of and ownership of their human genetic resources. Through the principles of self-determination and free, prior and informed consent, indigenous peoples can govern collection, access to and use of their data to ensure it prioritizes their interests in human genomic science and respects their collective cultural values and dignity.
Authors: Faith Kabata, University of KwaZulu-Natal; Donrich Thaldar, University of KwaZulu-Natal
