rendering of luminous DNA with gene being removed with forceps.

Bioethics Experts vs Ordinary South Africans on the Governance of Human Genome Editing

By Donrich Thaldar

On the issue of human genome editing (HGE), attitudes between bioethics scholars and the general public diverge, as highlighted by my team’s findings from a recent deliberative public engagement study.

In the study, which assessed views on heritable HGE among South Africans, participants adopted a pragmatic risk-benefit approach to specific applications of heritable HGE. This rational pragmatism of the study participants was informed by values such as improving quality of life, equality and (universal) access to healthcare, moral autonomy, and innovation. By contrast, we might characterize bioethics experts as raising principled objections to heritable HGE as a technology, such as Jürgen Habermas’s articulation of the “right” of the prospective child to an “unaltered genome.” (Not one study participant relied on this objection during the more than 20 hours of deliberations.)

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red and green silhouette illustration of women having a conversation.

The Not-So-Sacred Human Genome: What South Africans Think About Heritable Human Genome Editing

By Donrich Thaldar

South Africans have issued a clarion call for research to move ahead on health-related applications of heritable human genome editing (HHGE), finds my research group’s new public engagement study — the first of its kind in Africa.

The study engaged a diverse group of 30 South Africans in three evenings of deliberations on the governance of HHGE. The methodology entailed (a) facilitated deliberation between the participants with the aim of finding consensus, although consensus was not forced; and (b) ensuring well-informed deliberations by providing participants with balanced, internationally peer-reviewed information about HHGE and the ethical arguments relating to it. The results of these deliberations are summarized briefly below.

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