The subversive power of disability, facing an everyday more active birth selection


Technical advances do not always come with ethical ones… Danielle Moyse, philosopher and expert for Gènéthique, has noticed that with the arrival of non-invasive prenatal testing (NIPT), eugenic techniques are getting more serious, while, on the other hand, disabled people carry on showing, through the richness of their existence, that the meaning of life is not measured by its “normality”.

 

 One feels weariness and discouragement on noting the advances, apparently inevitable, of the selective management of births. And, indeed, at a time when it has become possible to modify genes using the “CRISP” method which enables one to slice defective DNA sequels to neutralize their noxious effects, it is highly possibly that we are at the dawn of an era in which the elimination of embryos carrying abnormalities will seem like the rudimentary prelude of the self-making of human beings…

 

What is the finality of gene modification in human beings?

 

We are not there yet, and it seems that the researchers Emmanuelle Charpentier and Jennifer Doudna, who found this new method, very promising on a medical point of view, are well aware of the potential worrying consequences of their discovery. However, the possibility that on the long term we will be able to operate modifications on human transmissible genes is not excluded. Will the conscience or worries of researchers be given more credit to delay or orientate the finalities of gene modifications in human beings than the warnings of Professor Testart to prevent the extension of preimplantation testing, that he had foreseen over 20 years ago, and considered as all the more inevitable as embryo sorting would be more discrete and painless for its “beneficiaries”? The future will tell.

 

Jennifer Doudna already acknowledges the fact that, probably carried away by the enthusiasm of their discoveries, researchers “have not had the time to talk about ethics and security”! As usual, technical advances come before ethical reflection. And following the logic of competition between laboratories, in which huge amounts of money are at stake, it is difficult to see how it could be otherwise…

 

Risk of new eugenic abuses and extension of prenatal selection to new cases.

 

True, the CRISPR method makes it easier to let go of any fragile safeguards because it has an immediate therapeutic purpose, particularly in fields which fight against cancerous cell multiplication or in work that aims at preventing the development of HIV. If one keeps in mind that some of the early eugenic promotors specifically used the term “selectionism”, one can see that, in those fields, selection via prenatal testing (PNT) or preimplantation diagnosis (PID) clearly falls within the definition of prenatal eugenics. With reason, one can fear that selection methods, unsuitably called genetic reparation methods for the past 20 years, become a ground for “eugenic abuses”. This has long been a fact and not a threat! “CRISPR” is giving itself a nice positive eugenics profile in which chosen physical features would be transmitted, unlike PND and PID which constitute a direct form of negative eugenics which goal is not to create individuals considered to be “normal”, but to avoid the birth of children carrying defective genes.

 

In the case of “CRISPR”, we are dealing with a threat of positive eugenics, a well settled method of eliminatory eugenics concerning foetus and embryo selection. A method that, as Professor Testart feared, can only spread as it become more painless. He warned people three decades ago: the more invisible testing of abnormalities becomes, the more effective and unquestioned it will be. By his warnings, he mainly meant preimplantation diagnosis, i.e. diagnosis carried out not on foetuses, as in prenatal testing which used to and still end in painful abortions, but on embryos, which after having been checked are implanted in the mother’s womb. But since those warning, prenatal testing has known technical improvements which enable doctors to check if the unborn child is “normal”, using a simple blood test at the very beginning of the women’s pregnancy. In case of bad news, abortion is still possible, and probably less traumatizing than an abortion carried out later on during pregnancy. So, basically, the various possible means of identifying genetic abnormalities are getting more effective, because less visible, and therefore less questioned. The evolution of prenatal testing towards non-invasive prenatal testing (NIPT) may cause a fœtus to be eliminated without one knowing whether it was a simple abortion or an abortion on medical grounds. The current claim according to which preimplantation diagnosis should be extended to diseases which did not used to be tested for, lies on arguments that are uncontestable according to a logic of selective management of births: “Over 60% of transferred embryos have serious genetic abnormalities or are non-viable on a metabolic point of view. In specific situations, these figures are even higher and cause repeated implantation failures, miscarriages or chromosomal abnormalities which are then detected during antenatal testing and lead to painful selective abortions”, explain promotors who wish to extend PID to more and more diseases.

 

Faced with the argument of compassion, is there no alternative to prenatal selection?

 

In the name of avoiding pain, men will go forever further, and it seems that, in the case of risking having a sick child, there currently seems no other possibility than increased selectivity. As if the perspective of renouncing if the probability of having a disabled child is too high, of adopting (which modalities should indeed be simplified) or even of taking the risk of giving birth to a disabled child have become obsolete or unthinkable options. When will the abuses of this forceful logic be put in full light? Isn’t mistaking disease therapy with selecting potentially disabled babies extremely problematic for the disabled people who indeed have to live with these diseases? Such is the question my sociologist friend, Nicole Diederich, and I tried to go over 15 years ago.

 

And yet, disabled people are fighting, carry on saying by their very existence that the path to happiness and dignity does not always take the path of scientifically calibrated normality. Of course, the birth of a sick child is a trial all the more terrible when it is not the first. That is why, before implantation in the mother’s womb, couples whose family already experienced such a trial were offered preimplantation diagnosis for the embryos that risked being carriers .But progressively, one always finds good reasons to move the boundaries of what is authorized: why, indeed, should a couple who does not wish to experience for the second time the birth of a child carrying a disability that has already come up before among the siblings, accept the birth of a child carrying another disability?  It is therefore probable that in the fields of science and technique, people are already getting carried away backed by the irrefutable argument of “compassion” for suffering couples. People will start showing concern only once this diagnosis process forever seeking more abnormalities will have spread.

 

Disabled people, fertile by their presence

 

Remains the fact that one does not easily dominate over human freedom, over the unpredictable characters of human beings! Facing the most restrictive situations, women and men carry on fighting to exist the way they are. By the time I write these words, the comics festival of Angoulême will have decided on a striking exhibition, made clear by its hard-hitting title: Knock outsiders Komics. The idea is to show the world real collaboration work between modern artists, both “valid and “disabled”. Nothing sentimental in the productions. On the contrary, some of the drawings exposed even express a certain form of violence. «Never do we take into account a so-called weakness due to disability”, explains one of the actors of the event. Everyone works according to his/her skills, both unique and opposed, which sometimes gives rise to explosions, humor, universes, the unexpected”. Another person committed to the project notes that: “This fight may seem very different to the sometimes sentimental vision one has of the usual work given to disabled people. We reject that idea in the sense that this project is a sanctuary neither for one group of people nor the other. The work can be violent because it is cathartic. Some things sometimes need to be expressed vigorously and sometimes great love comes out of the encounters.”

 

Though, as the psychanalyst Pierre Legendre could have put it, human beings are born in “operating theatres”, it is by leaping over the boundaries of scientific logic and technique that people needs to rethink their own happiness, question norms and claim the subversive power of the acts and presence of people called “disabled”. About the exhibition at the festival of Angoulême, Cathia Engelbach says it is “a fruitful artistic fight which separates styles and knocks down certain pre-established settings and codes of traditional comics.” Thus, the exposition is not presented as an “integration” experience aimed at insuring the “wellbeing” of those “poor mentally disabled people”, but rather as a place where each person goes to another based on singularity, and where everybody finds an enrichment! When “mental disability” questions the art of comics, the same as African sculpture reinvented modern painting through the work of Picasso, Giacomett, Amadeo de Sousa, and so many others, how could one still see elimination of the “undesirable” as the only “solution”; they are faced, in this very world, with people who sidestep the rules?