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Last May, a quiet update to South Africa's ethical guidelines for medical research sent shockwaves through the scientific community. The country incorporated a new chapter on heritable genetic modification into its regulations (South African Ethics in
Health Research Guidelines: Principles, Processes and Structures). It thus became the first nation to officially consider experiments on gene modification 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 on hereditary genetic modification could be conducted. 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 requires complete transparency of protocols, that researchers ” ensure that participants and stakeholders are well informed of the objectives, methods and potential implications “, that they obtain informed consent from participants and conduct 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 heritable modification of the human genome ” the text specifies.
This evolution of the legal framework and its interpretation are not unanimous within the scientific community. For Dr Jantina De Vries, Associate Professor in Bioethics in the Department of Medicine at the University of Cape Town, heritable 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 manipulations “, she specifies.
Contrary to De Vries' view, bioethicist Bonginkosi Shozi, a researcher at Stanford Law School, supports a different interpretation. According to him, the existing legislative framework in South Africa already authorized, implicitly or explicitly, the practices of heritable genetic modification that these guidelines now seem to officially endorse. In other words, Shozi considers that these new rules only recognize an already established legal reality, rather than creating a new framework.
In a study published in 2020 in the journal South African Journal of Science , the latter also argued for regulation rather than a ban, highlighting the therapeutic potential of these technologies for the South African population.
200% Deposit Bonus up to €3,000 180% First Deposit Bonus up to $20,000This regulatory development of course revives the historical debates on eugenics and its potential excesses. The scandal of 2018, when the 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 close the debate; On the contrary, it has 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 testified to these concerns. The organizing committee of the third international summit on human genome editing has also reaffirmed in 2023 the “ unacceptable ” nature of these practices.
The main fear ? Seeing the silhouette of a modernized eugenics resurface, where the selection of genetic characteristics would create a two-speed society between ” improved ” individuals and ” natural “. A fear similar to that raised by the successful placement of implants by the Neuralink company.
Biologist Françoise Baylis, a member of the WHO advisory committee on human genome editing, 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 to draw the line ? The line between therapy and enhancement 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, urges 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 promises of improving the human species have led to systematic discrimination.
The South African debate resonates all the more strongly in a country seriously marked by apartheid, where the classification and hierarchization 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 is therefore imperative to put in place a solid regulatory framework to supervise research and applications of genetic modification, taking into account the specificities of the South African context.
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