ELSIcon2022 Late-Breaking: South Africans’ opinions on human heritable genome editing: Promoting equal access as key to the future

ELSIcon2022 • Networking Session • Late-breaking Abstracts • June 1, 2022

Donrich Thaldar, Bonginkosi Shozi

A deliberative public engagement study among South Africans on the topic of heritable human genome editing (HHGE) – the first of its kind on the African continent – found that there is overwhelming support for allowing the use of HHGE to prevent genetic health conditions, and to make future people immune against diseases such as TB and HIV/Aids. This highlights the extent to which local context – in the case of South Africa, the ongoing TB and HIV/Aids epidemics – can influence opinions regarding allowable uses of HHGE. Similar to most other countries, significant majorities opposed allowing HHGE for enhancement such as higher intelligence and cosmetic choices. The dominant paradigm during the deliberations was balancing health benefits with unforeseen health risks. The seriousness of a health condition emerged as the determining factor for the policy choice of whether to allow an application of HHGE. The value of equal access to HHGE as a healthcare service also emerged as an important value, and was for a significant minority a condition for allowing the use of HHGE. However, it is uncertain whether the condition relates to (a) political steps to promote equal access to HHGE, or (b) accomplishing the aim of equal access to HHGE. We suggest that, from a South African constitutional perspective, (b) would be untenable, and the condition would need to be (a). We conclude that promoting equal access is essential in building societal consensus towards a future that includes the responsible use of HHGE as a healthcare service.