In this podcast episode, Ms Nomfundo Mthembu and Ms Amy Gooden discuss the ethical considerations in establishing an open access genomics database in South Africa.

Summary

Although genomics research has the potential to improve healthcare, only a small percentage of genomic data used internationally relates to persons of African origin. Although the establishment of a large scale, open access genomics database of South Africans may contribute to solving this problem, it is not without its ethics concerns, such as privacy risks and informed consent. Open consent offers a potential solution by being explicit about the risks involved. Furthermore, in the South African context—where local culture is infused with Ubuntu—community engagement is vital for establishing and maintaining an open access genomics database of South Africans.

Further reading

Gooden, A., and Thaldar, D. (2023). Toward an open access genomics database of South Africans: Ethical considerations. Frontiers in Genetics.

Thaldar D, Gooden A and Steytler M (2023) Open science and human genetic data: recommendations on South Africa’s Draft National Open Science Policy. Frontiers in Genetics.

See also

Thaldar, D., Gooden, A., and Donnelly, D.-L. (2023). Toward an open access genomics database of South Africans: Legal considerations. South African Journal of Science.