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Alexandre Bretel

In the common imaginary, genetic modifications belong above all to the field of science fiction. But some techniques have already been in use for several decades, and new ones raise unprecedented ethical questions. The CRISPR-Cas9 technique thus allows very precise modifications to be made to the genome, which would make it possible to treat diseases, but which could also open the way to eugenics. The Oviedo Convention provides a framework for authorized interventions. Genetically modified organisms (GMOs) promise better yields, but also raise concerns about their safety and the choice of citizens to consume them. More than ever, citizens must be prepared for these bioethical issues.

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In the movie Gattaca, society is governed by eugenic rules in which human embryos are selected in such a way as to retain only those characteristics considered “superior”. Genetically modified individuals work in the leading positions, while naturally born individuals are relegated to the subordinate tasks. This movie allows us to question ourselves on the bioethical consequences of genetic modifications. Because of the tremendous progress in genome sequencing, impressive progress has been made in the understanding of the genome.

Closer to us, in 2020, the Chinese researcher Jiankui He, who had modified the genome of two Chinese twins, Lulu and Nana, was sentenced to three years in prison and 380,000 Euros in penalties for the illegal practice of medicine. He had used the genetic modification technique CRISPR-Cas9, also known as the “genetic scissors”, because of the relative ease with which this technique can modify the human genome.

This does not mean that certain genetic modifications should be completely condemned. What is reproached to this Chinese researcher is to have directly modified the genome of these twins, even before their birth, which raises the question of their hereditary transmission. On the other hand, in the case of non-hereditary gene therapies, certain medically justified genetic modifications could be approved. For instance, in 2015 tests were conducted in China to treat beta-thalassemia, a blood disease, and in 2017, an American team attempted to correct a mutation associated with a serious heart disease. The results are still inconclusive. But the day when this technique will be more advanced, will it be necessary to decide, for example, about the authorization of operations to modify the genome of an embryo to avoid the transmission of a serious disease when both parents are affected and the risk of giving birth to a sick child is 100%?

Let us recall the principles of the Oviedo Convention[1] for the Protection of Human Rights and Dignity of the Human Being in relation to the applications of biology and medicine. This text of law serves as an international reference in bioethics.  It establishes the fundamental principles relating to the practice of everyday medicine, biomedical research, genetics, organ and tissue transplantation, informed consent, the right to privacy and the right to information. This convention is based on the principle that the interest of the human being prevails over the interest of science (Article 2). It prohibits any form of discrimination against a person on the basis of his or her genetic heritage (Article 11) and authorizes genetic testing only when it is medically justified (prevention of serious genetic diseases). As regards for interventions on the human genome, they may only be undertaken for preventive, diagnostic and therapeutic purposes and only if they do not result in changes in the genome of the offspring (Article 13). With regard to medical research, the convention provides specific modalities for persons who do not have the capacity to consent to research. It prohibits the creation of human embryos for research purposes (Article 18.1). It also ensures that informed consent must be obtained from all persons before undergoing a procedure, except in emergencies. Consent may be withdrawn at any time. Every patient has the right to know information about his or her health, including the results of predictive genetic tests. A person’s wish not to be informed must also be respected. The Convention prohibits the removal of non-regenerative organs and tissues from a person who does not have the capacity to consent. A single exception is made, under certain conditions, for regenerative tissue between siblings. It certainly seems essential to make researchers aware of these bioethical issues, for example through specific courses about such Conventions and Ethics and Human Rights in general that should be given along with the technical courses at the universities.

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There are also other applications of genetic modification in the service to humans. For instance, genetic modifications on the population of Aedes aegypti mosquitoes, carriers of the dengue virus, with a 93% decrease in the contamination rate in the region concerned in Panama during an experiment. These practices raise many questions: what is the risk of “contamination” of species other than the target population? What is the ecological impact – and for biodiversity – of eradicating mosquitoes that are pollinating insects and feed fish larvae? What are the long-term risks for the species in case of acquisition of new “properties”? How can the spread of the gene be stopped in case of loss of control of the technology? Studies must be conducted over long periods, with the development of multiple scenarios by multidisciplinary teams combining molecular biology, ecology, social sciences, for a careful evaluation of the long-term benefit/risk balance.

There is also the case of genetically modified organisms, aimed at increasing yields or eliminating certain deficiencies, like “golden rice”, which allows β-carotene to accumulate and prevent millions of children from losing their eyesight.

At the same time, it should be noted that a balanced diet would be preferable for these individuals, and that existed before the Green Revolution, which allowed an increase in agricultural yields but with an increase in mono-crops. The yields of “golden rice” are much lower than normal rice, which pushes farmers to turn away from it.

These complex situations should raise awareness of the interaction of genetic modifications with other components of society. The prohibition of this GMO product must be questioned in relation to its benefits, as well as the question of possible health risks, environmental sustainability and an equitable sharing of the benefits of this biotechnology. The issue of genetically modified animals also raises the question of animal well-being. These issues deserve to be debated collectively by including all relevant actors in society, such as research laboratories, companies, governments and the end users, the citizens.

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[1] Oviedo Convention and its Protocols: https://www.coe.int/en/web/bioethics/oviedo-convention