Last May, a discreet update of South Africa’s ethical guidelines for medical research created shock waves in the scientific community. The country has integrated into its regulations (South African Ethics in
Health Research Guidelines: Principles, Processes and Structures) a new chapter devoted to hereditary genetic modification. It thus becomes the very first nation to officially consider experiments on the modification of genes that can be transmitted to future generations. A further step towards a new form of eugenics?
The new regulatory framework details the conditions under which research into hereditary genetic modification could be carried out. Researchers will have to demonstrate the existence of a “ indisputable scientific and medical justification “, focused primarily on the prevention of serious genetic diseases.
The text also imposes total transparency of the protocols, which the researchers “ ensure that participants and stakeholders are well informed of the objectives, methods and potential implications », that they obtain informed consent from the participants and carry out rigorous ethical control. Long-term medical monitoring of people born as a result of these genetic modifications will be mandatory to assess their health and detect possible unforeseen effects. “ The potential benefits for individuals and society must clearly outweigh the risks and uncertainties associated with hereditary modification of the human genome » specifies the text.
A legal void that worries the international community
This evolution of the legal framework and its interpretation are not unanimous within the scientific community. For Dr Jantina De Vries, Associate Professor of Bioethics in the Department of Medicine at the University of Cape Town, hereditary genetic modification remains illegal in a clinical context, despite these new guidelines. “ Only the ethical framework of research has been modified, not the legality of transmissible genetic manipulation. she specifies.
Contrary to De Vries’ opinion, bioethicist Bonginkosi Shozi, a researcher at Stanford Law School, maintains a different interpretation. According to him, the existing legislative framework in South Africa already authorized, implicitly or explicitly, the practices of hereditary genetic modification which these directives now seem to officially endorse. In other words, Shozi considers that these new rulesthey only recognize an already established legal realityrather than creating a new framework.
In a study published in 2020 in the magazine South African Journal of Science the latter also pleaded for regulation rather than prohibitionhighlighting the therapeutic potential of these technologies for the South African population.
Is the future of humanity being written in Pretoria?
This regulatory development of course revives historical debates on eugenics and its potential abuses. The scandal of 2018, when Chinese scientist He Jiankui announced the birth of the first genetically modified babies, had already raised these fundamental questions. His imprisonment for “illegal medical practice” did not end the debate; on the contrary, it has instead catalyzed a global reflection on the ethical limits of genetic modification.
The call for a 2019 international moratorium on the clinical use of heritable genetic modification, supported by the US National Institutes of Health, already reflected these concerns. The organizing committee of the third international summit on human genome editing has also reaffirmed in 2023, the character “ unacceptable » of these practices.
The main fear? See the silhouette of modernized eugenics resurfacewhere the selection of genetic characteristics would create a two-tier society between individuals “ improved ” And ” natural “. A fear similar to that raised by the successful installation of implants from the company Neuralink.
Biologist Françoise Baylis, member of the WHO advisory committee on human genome modification, points out a major risk: these new guidelines could serve as a Trojan horse for gradually legitimize the creation of genetically modified children. Beyond the prevention of serious genetic diseases, where should we draw the line? The line between therapy and improvement remains blurred. History teaches us that medical arguments often served as a screen for eugenic policies.
Michael Pepper, director of the Institute of Cellular and Molecular Medicine at the University of Pretoria, calls for vigilance: “ Global reluctance toward heritable genetic modification persists. We need to understand the motivations that led to the publication of these guidelines in their current form”. This reservation echoes the lessons of the past, where the promises of improvement of the human species led to systematic discrimination.
The South African debate resonates all the louder in a country seriously marked by apartheidwhere the classification and hierarchy of populations have left deep scars. The prospect of a new form of discrimination, this time based on genetic heritage, raises particularly sensitive questions in this particular historical context. It therefore becomes imperative to establish a solid regulatory framework to supervise research and applications of genetic modification, taking into account the specificities of the South African context.
- South Africa has just introduced new guidelines on hereditary genetic modification into its medical regulations.
- This new ethical framework imposes transparency and rigorous monitoring, but leaves concerns surrounding the clinical legitimacy of such practices.
- This turning point revives debates around a possible return to eugenics, a particularly sensitive subject in a country still marked by apartheid.
