A deliberative public engagement study on heritable human genome editing among South Africans: Study results

Abstract

This paper reports the results of a public engagement study on heritable human genome editing (HHGE) carried out in South Africa, which was conducted in accordance with a study protocol that was published in this journal in 2021. This study is novel as it is the first public engagement study on HHGE in Africa. It used a deliberative public engagement (DPE) methodology, entailing inter alia that measures were put in place to ensure that potential participants became informed about HHGE, and that deliberations between the participants were facilitated with the aim of seeking consensus. A diverse group of 30 persons was selected to participate in the DPE study, which took place via Zoom over three consecutive weekday evenings. The main results are: Provided that HHGE is safe and effective, an overwhelming majority of participants supported allowing the use of HHGE to prevent genetic health conditions and for immunity against TB and HIV/Aids, while significant majorities opposed allowing HHGE for enhancement. The dominant paradigm during the deliberations was balancing health benefits (and associated improvements in quality of life) with unforeseen health risks (such as loss of natural immunity). The seriousness of a health condition emerged as the determining factor for the policy choice of whether to allow an application of HHGE. More generally, equal access to HHGE qua healthcare service featured as an important value, and it was uncontested that the South African government should allocate resources to promote scientific research into HHGE. These results are aligned with the policy principles for regulating HHGE in South Africa suggested by Thaldar et al. They call for urgent revision of South African ethics guidelines that currently prohibit research on HHGE, and for dedicated HHGE legal regulations that provide a clear and comprehensive legal pathway for researchers who intend to conduct HHGE research and clinical trials.

Points to consider in the development of national human genome editing policy

“…If legislation were ever introduced into the Australian parliament to allow the creation of human embryos for genome editing research, it seems inevitable that similar concerns will be raised. In contrast, the status of the human embryo receives much less attention in citizen deliberations in other jurisdictions (Thaldar et al, 2022 ).…”

Innovating for a Just and Equitable Future in Genomic and Precision Medicine Research

“…The question of who is to benefit is central to Shozi and Thaldar's discussion (this issue) of their deliberative public engagement study of heritable human genome editing (HGGE) (Thaldar et al, 2022). They challenge the Eurocentric orientation of ethical frameworks that center the individual and the concerns of the present, by drawing on an interpretation of the African philosophical concept of Ubuntu, an ethic that articulates moral duties to community members, present and future.…”

A golden opportunity for South Africa to legislate on human heritable genome editing

“…In this article, I discuss the principles that guided the formulation of the proposed HHGE-specific legislation in the light of recent legal developments in SA that clarified the scope of relevant constitutional rights, and the results of the deliberative public engagement study. [1] This is followed by remarks on the proposed HHGE-specific legislation itself.…”

“…Firstly, a deliberative public engagement on the governance of HHGE was conducted among South Africans, and the results were published recently. [1] Given the methodology of this public engagement study, which ensured that its participants were properly informed, [2] the results provide valuable insight into informed opinions of South Africans. Secondly, the SA government is currently revising the regulations (i.e.…”