Jérôme Santolini, administrateur de Sciences Citoyennes, est intervenu le 5 mars 2022 lors de la conférence « Why Your Movement Should Oppose Designer Babies? » organisé par Stop Designer Babies.
Voici le texte de sa présentation (en anglais) :
An NGO created 20 years ago whose objective is to put science and scientists back into society and to democratise science, in many different ways, at the level of the definition of the knowledge we need, of the production of knowledge and its uses. We believe that knowledge and science are eminently political objects and we advocate the role of science in the ecological and social crises, as well as the social responsibility and political commitment of science and scientists.
Our actions take several forms. We seek to foster debates numerous socio-technical controversies linked to the use of certain technosciences (such as GMOs or geo-engineering), but we also develop numerous views on technical democracy and the organisation of the research world. Over the past twenty years, we have set up numerous tools such as the Citizens’ Conventions, an instrument of citizen’s political deliberation whose purpose can be, for example, to allow the democratic elaboration of choices on the use of technologies or the orientations of research. We have also been at the origin of thee French Whistleblowers’ House and have contributed a great deal to the development of participatory research in France, for which we claim for a high degree of democracy and the co-construction of knowledge.
The association is at the crossroads of two types of advocacy: a political advocacy, on the need to democratise the mechanisms of production and use of knowledge and techniques; another on the very nature of socio-technical controversies and the societal choices we make. Genome editing is a perfect illustration of the complementarity of these two pleas and of the complexity of the issues at the Science/Society interface.
Sciences Citoyennes’s position on genome editing
Genome editing, and more generally the development of all techniques of genetic manipulation of living organisms, do not correspond to any demand from society, nor are they supported by an open, global debate on the legitimacy, usefulness or risks associated with these new technologies. The rapid development of biotechnologies is characterised by a complete democratic vacuum and by the grip of the scientific and industrial worlds on public decisions. The political agenda is captured by a very influential minority, and the choices to develop these techniques are made in an undemocratic way. Not only is the choice to manipulate the living, the genome of plants, animals and humans made without the consent of citizens, but it is made against them.
Indeed, Sciences citoyennes is fundamentally opposed to the vision of man, of society, of the living being that this biotechnological frenzy carries, a project of civilisation that is built against the ethical values on which our societies are based, that endangers the conditions of life of man on Earth and that is an attack on human dignity. We are at the dawn of a technological revolution which, like the revolution of the sixteenth and seventeenth centuries, will profoundly change our relationship with the world. Today, it is our ‘humanity’ that is at stake and the advances in genetic sciences and technologies give always more powerful weapons to those who wish to dehumanise us.
Bioethics legislation and regulation
This mobilisation is more than necessary in view of the political situation in France. France adopted a bioethics law fairly quickly (in 1994, i.e. 12 years after the first French test-tube baby), agreeing that this law should be amended regularly, every 5/7 years. However, this revision of the law does not always respond to the emergence of new problems or social issues, but rather seems to follow scientific advances, to submit to international competition, to seek ever more medical or paramedical applications which constitute a market with strong growth potential for many companies. French bioethics laws are modified very regularly, they do not regulate the scientific, technical, medical or commercial practices but are constantly adapted to the state of knowledge and techniques and to ‘progressive’ pressure groups. In other words, the law does not regulate Science, it is Science that creates the law. This constant evolution of regulations over the last twenty years is manifested by an increasing permissiveness towards the demands of scientists and certain lobbies and leads to the authorisation of ever more scientific experiments and medical practices. In this respect, certain measures in the latest bioethics law are confounding :
– Authorisation of the mass production of gametes through the directed in vitro differentiation of somatic cells or stem cells. The risks of merchandising of gametes, the generalisation of pre-implantation diagnosis and positive eugenics have obviously not been taken into account.
– Authorisation of human-animal chimeras by combining embryonic cells (human/mouse, human/pig) with transfer into the uterus of the animal species.
The question of the dilution of identity of these « hybrid objects », the very nature of these demiurgic creations, the infringement of animal and human dignity, etc., did not embarrass the legislators, who saw it only as a practical means of producing organoids (to produce organs for transplantation), or of furthering science.
– Editing the genome of human embryos by applying Crispr-Cas9 on an experimental basis to define the conditions of good practice prior to the birth of genetically modified children. Here again, under the pretext of the non-implantation of embryos, the legislators have authorised the ultimate transgression, that of substituting themselves for Chance/Nature, whatever name we give it, and arrogating to themselves the right to modify, control, and even create our own genetic, bodily and material identity. We would no longer depend on anyone but ourselves, the ultimate fantasy of becoming one’s own God.
These laws were passed not in the name of the welfare or sake of mankind, but in the name of Science. The law has been used not as a tool for regulation, but as a tool for the promotion of biotechnology; politicians do not seem to care about the best interests of mankind, but rather are in a hurry to blindly respond to the fantasies of the craziest scientists and the most demanding parents. This forced march of biotechnological progress is done while refusing to ask questions about the medical, social, cultural and moral consequences of these laws. Thus, what is the point of producing thousands of gametes artificially, if not to use them intensively and thus profoundly modify our ways of « reproducing » ourselves as individuals, as a species ? What is the point of authorising the modification of human embryos if not to then, in the name of the « care » provided to the embryo, henceforth considered as a « patient », authorise the re-implantation of embryos « cured » of their genetic defects, related to orphan or social diseases ?
The project of mastering man, from his creation to his death, of improving « human quality » is what drives this permanent revision of the bioethics laws and is reminiscent of the wildest transhumanist delusions. But obviously, this is not said publicly. The political space in which these laws were drawn up, discussed and voted on has been captured by the scientific and industrial world. There has been no really contradictory public debate on these precise points. In this sense, the evolution of French laws reflects an abdication to scientific or societal pressure groups of what a law should be (regulating science and medicine) and the democratic way in which it should be elaborated.
Lack of public mobilisation
Public attention has been focused on other, less technical, aspects of the latest bioethics laws. The extension of medically assisted procreation and the authorisation of surrogate motherhood, which have given rise to a great deal of mobilisation and discourse, has played the role of the tree that hides the forest. As far as the editing of the human genome is concerned, the general feeling is non-existent. There is very little information, and even less debate on these issues. These debates have had little to do with the issue of human biotechnology, have rather served as a relay for the dominant discourse and have had almost zero media coverage. However, when you explain in detail to your family or friends the state of the legislation in France, what is being done or can be done, the concrete consequences of these new laws… people are individually horrified. No one can imagine that it is acceptable to produce human/animal chimeras, thousands of gametes artificially and even less to modify the human genome… And yet, this is what is going to happen thanks to the latest legislative revision
In France, there are very strong mobilisations against plant biotechnologies, built on many associations and activists, and the issue of GMOs is very present in the media with a strong people’s commitment for or against. But surprisingly, when these biotechnologies are applied to humans, this does not trigger any reactions in the population, as if a smokescreen separated them from this reality. It is likely that this ‘factory of ignorance’ is the result of the activity of pressure groups that were able to capture the space for public discussion and decision-making at a fairly early stage. Unlike other fields (plant biotechnologies, digital technology, pesticides, etc.), these groups are not all in the service of economic interests but seem to defend a certain vision of science and human beings, an ideology.
The responsibility of scientists
In my opinion, the scientific community is largely responsible for the invisibilisation of the issue of human genome editing, and this has been the case since the 1990s and the first law authorising PGD in 1994. The debate has been captured and the terms imposed by scientists who have reduced it to its technical dimension, prevented any possibility of addressing ethical, social, cultural or even medical issues. The absence of contradictory debates illustrates this capture. Positions or initiatives seeking to question the extremely rapid development of human biotechnologies are quickly caricatured and labelled as obscurantist, religious, anti-progress movements… Scientists have imposed their agenda on the political world, by imposing the idea that genome manipulation is inevitable, indispensable. They are manoeuvring to short-circuit any attempt at prohibiting or even regulating human biotechnologies by once again mobilising a rhetoric of scientific and economic promises, by defending the « imperative of medical finality » and, as is often the case, by waving China around like a scarecrow: « It has to be done because if we don’t do it, China will.
The reaction of the French scientific community to the Chinese GMO babies is an illustration of its position on genome editing: favourable. Indeed, scientists condemned Jangkui He’s experiments, not for ethical or moral reasons, but because this « work » had not been done correctly, from a technical and legal point of view. They did not question the very fact of creating GMO babies, and they rather gave the impression that they regretted not having done it themselves first. They were more hurt that they had been scooped by an outsider researcher, than concerned about the risks of developing these human biotechnologies. These scientists are now organised in international networks, penetrate international bodies and hold congresses where they define the conditions they consider necessary to promote their projects. It is a vision of a mythical, omniscient and omnipotent science that is being imposed, a science that places itself above cultural and political norms, above ethical and moral values, a science that is accountable to no one and decides our future without us and even against us, and it is this vision of Science that should frighten us the most and encourage us to react.
Find more about it here : https://stopdesignerbabies.org/news/