A virtual deliberative public engagement study on heritable genome editing among South Africans.

Abstract

Throughout human endeavour, balancing ethics and safety with progress has historically been challenging to achieve, and this remains true for heritable human genome editing (HHGE). While HHGE holds the potential to revolutionise medicine, it has also sparked a global debate regarding its ethical, social and regulatory implications. This study emphasises the importance of incorporating the South African perspective into this ongoing global debate by exploring the opinions of an informed South African public on the acceptable applications of HHGE for genetic health conditions, immunity and genetic enhancements through a deliberative public engagement study. A qualitative thematic analysis following Braun and Clarke’s six-phase method was conducted on participant responses, revealing a global theme: ‘Balancing health benefits (including improvements to the quality of life) with unanticipated risks to individuals and society.’ Seven principal themes emerged, reflecting key concerns: ‘The potential benefits of HHGE’, ‘impact on natural immune responses’, ‘equitable access to HHGE for everyone’, ‘HHGE and discrimination in society’, ‘the right to autonomy’, ‘going against human nature’ and ‘ambiguity in reasons for opinion changes’. These findings highlight the necessity of public engagement in shaping HHGE policies, emphasising that legitimacy extends beyond legal validity to include moral authority and societal acceptance. Additionally, the results of the study may be advantageous to policymakers as evidence-based research for the future regulation of HHGE in South Africa, especially given its current legal position on HHGE.