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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.

First, provided that HHGE is safe and effective, an overwhelming majority of participants supported allowing the use of HHGE not only to prevent genetic health conditions, but also to attain immunity against TB and HIV/AIDS. The level of support for editing to attain immunity against serious disease, at over 80%, was significantly higher than the median of 60% found in 20 other countries by a Pew Research Center study. Some context, however, is important here. TB and HIV/AIDS are epidemics in South Africa. TB is the leading cause of death in South Africa. As a result, South Africans are likely to perceive the risk of these diseases with more immediacy and seriousness compared to people elsewhere in the world. The South African study participants mostly framed their deliberations as a health cost–benefit analysis. Accordingly, the seriousness of a health condition determined whether to allow an application of HHGE. This is aligned to many international policy statements that use seriousness as a criterion for determining which diseases should be targeted by HHGE research.

The deliberations about allowing certain applications of HHGE were intertwined with the issue of access to HHGE. Participants felt strongly that if applications of HHGE for health-related purposes are allowed, they should be made widely available to the South African public. This should be understood in light of the fact that the right to access to healthcare services is an enumerated right in the South African Constitution.

The second main result of the study is that significant majorities of the participants opposed allowing HHGE for non-health-related purposes such as higher intelligence, athleticism, and influencing personality and behavioral traits. However, there were also sizeable minorities who had no problem with some of these applications of HHGE, and would have allowed them. In the case of intelligence, in particular, some argued that higher intelligence is preferable from both an individual and societal perspective. However, these voices remained a minority, unlike in India, where the Pew Research Center study showed that a majority of respondents favored allowing HHGE for boosting their children’s intelligence. At a level of values, the deliberations on using HHGE to influence children’s personality and behavioral traits were characterized by a contest over autonomy. Should the intended parents’ reproductive autonomy to use HHGE win over the prospective children’s eventual autonomy to decide certain things for themselves? (We analyze this question from a legal perspective in this article.) Evidently, the prospective children won this contest — an interesting reflection of socially acceptable boundaries between parental power and children’s personal decision-making space in contemporary South African culture.

Also interesting to note for an international readership, there was no statistically significant difference in opinions between participants based on demographic characteristics such as race or religion. Clearly, the South African 1996 Constitution — its rights, language, and values — have become part of the fabric of a national South African culture. And although the deliberations were quite animated at times, they always remained civil.

Most remarkable in the South African study though, was the participants’ pragmatic approach to HHGE. While they recognized that HHGE would place significant power over human nature in human hands, and that this was a reason for caution, it was equally perceived to be an opportunity to improve people’s lives. And although some participants referred to the human genome in mystical terms (for example, talking about HHGE as “rewriting the book of life”), this appeared to have added to the weight of both sides of the pragmatic scale — caution and opportunity. Neither the recognition that HHGE would entail power over human nature, nor the mystical metaphors sometimes used to describe the human genome and HHGE translated into a principled objection against this new technology. None of the participants claimed that the human genome in its “natural” form has any kind of special value that will be lost if HHGE is allowed. Accordingly, the argument advanced by some anti-HHGE activists that the human genome is sacred, and that its integrity should therefore be preserved, clearly did not find traction with the South African study participants. By contrast, the participants overwhelmingly supported changing the human genome if this offers promise of a better life — in the sense of a life without fear of TB or HIV/AIDS — for their children.

Moreover, there were calls for the South African government to invest in HHGE research in order for South Africa to become an active player in this research space. As a participant stated during a plenary session, the South African government should develop a policy for HHGE “that’s more imaginative.” Why do we not see this optimism in international policy statements on HHGE? If policy-makers in the HHGE space are serious about their calls for public engagement, they also should take seriously the results.

dthaldar

Donrich Thaldar is a professor of law at the University of KwaZulu-Natal, Durban, where he chairs the Health Law & Ethics Research Interest Group. His research interests are reprolaw and genetics and the law. He is currently principal investigator of an NIH-funded project that investigates the legal aspects of data science in health innovation in Africa. Donrich also has a private law practice, where he specializes in strategic litigation in reprolaw. Before starting his academic career in 2017, he practiced as a litigation lawyer at the Pretoria Bar. He served as legal counsel or as amicus curiae in several landmark cases in the field of reprolaw in South Africa. Some highlights are: The first case that considered the concept ‘designer children’ (2016); the first case of posthumous conception (2018); the first case of gamete withdrawal from a comatose person (2020); and the first case about the enforceability of a sperm donor agreement (2021); and a successful legal challenge to the constitutionality of the statutory prohibition on non-medical preimplantation sex selection (2022).

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