On 21st March 2014, 3rd World Down Syndrome day, the Collectif les amis d’Eléonore organized at the Economic, Social and Environmental Council (ESEC) a congress on Down syndrome. Danielle Moyse, philosopher, raised ethical questions about prenatal diagnosis (PND) of Down syndrome. Interview.
G: Is it not a paradox to dedicate a word Down syndrome day when we note the almost systematic elimination of foetuses detected with Down syndrome? How do you explain such a selection before the birth?
D.M: 96% of the antenatal elimination of foetuses with Down syndrome make all the more necessary a world Down syndrome day which highlights Down syndrome people. This necessity may even seem urgent at the outset of the possible introduction of more efficient tests. Such a day can also appear as derisory faced with the power of legal, economic and technical device to which we have to face. The fact that it can still exist reflects that this device triumphs over our humanity.
Such a selection has its origin in the possibility of the prenatal screening. The temptation is high to eliminate before their birth foetuses with some diseases (no-one can say it could not succumb to!), when we do not know how to cure. To open the possible way to the act of this temptation, we need the technique and also a law. Our code of public health states that we can terminate a pregnancy “at any time” when “it exists a high probability the unborn child has a particularly severe disease at the moment of the diagnosis”.
But more radically, the selective device has philosophical origins which induce progressively, in particular since the 17th century, a vision of the relation of the man to the nature, at birth and death which makes it possible historical drifts of which we are not sure our spirits are totally free. The way by which the man has for mission, by the voice of Descartes, to become “a master and owner of the nature” should one day results in birth and death are included in this affirmation of power and all that was about to contravene are considered as “undesirable”. Disability, disease, weakness are the other side of the all-powerful rhythm of the modern Western world.
The prioritization of lives found in this orientation its conditions of possibility. We should not forget that the identification of Down syndrome was done by Doctor Down, theorist of the breed selection, who talked about “ethnical “characters of those we call, since J. Lejeune, trisomic children. These were supposed to correspond to the resurgence within Caucasian people of an inferior state of development of the humanity. What implies that the selective program corresponds to the complex meeting of all these factors.
G: You made a study on the PND to obstetricians. What was the objective of this study, and what were the results?
D.M: This study had been made with Nicole Diederich after the Perruche’s Decree” (which indemnified Nicolas Perruche because his mother could not resort to medical termination of pregnancy due to screening error which declared as immunized against the rubella). It aims at establishing a report of the practice of the prenatal screening and of the medically termination of pregnancy. Indeed, following this justice decision, obstetricians warned about what they called “eugenics of precaution” which would generate medically termination of pregnancy when having the least doubt about the state of the foetus to avoid proceedings.
In 2005, this justice decision generated above all the abandonment of the job of prenatal ultrasonograhist by a number of those who did not performed it exclusively and were more risky for error, the insurances having dramatically increased.
The immediate result was a decrease in the number of practitioners and the implementation of an unequal access to the foetal ultrasonography, some regions being abandoned. I do not know if the things are reequilibrated since then, but we wondered if the claims for social justice would go through an equal access to the possibilities to select the lives!
We were hit by the malaise of a certain number of practitioners who wanted a redefinition of the objectives of prenatal screening of which several affirmed that it was not implemented to select the births, but to prepare to it. They call for a large debate.
G: Do you see the non-invasive prenatal diagnosis (NIPD) as an “ethical progress” as said the CCNE in its opinion 120?
D.M: For sure, we cannot deplore that the improvement of the reliability of the tests decreases the risks of diagnosis errors which leads to the elimination of the foetus which would have led to a birth, without this error. But this is all the perversity of the system: To preserve unborn children, we are highly tempted to applause the emergence of these tests. But when we welcome the preservation of “healthy” children, we are pleased of the possibility not to “”have” “unhealthy” children.
It is obvious that the non-invasive test, less violent for women, can be the powerful weapon of an invisible selection of which Professor Testart denounced the risk from the 90’s.
G: J.Testart warns about eugenics caused by the preimplantation diagnosis. Do you think that the PND can lead at the same effect? For you, which society do we create?
D.M: J. Testart proves that the freedom is still possible faced with the technique. Prominent player of the practice of the MPA, he gives the example of a scientist who reoriented his researches from his worries. All is not lost. It remains to be seen to where this kind of resistance can be an example, or a model. It is clear that the more manufactured the child is, the more we are tempted to manufacture as we want it. Namely, without “defect” It seems that the PND, with the new non-invasive test, can be the weapon of an invisible selection more massive than the PID which supposes that we perform an in vitro fertilization. Unless it is assumed that we go towards a generalization of this practice, it seems that, for the moment, it is the PND which is the more common instrument of the selection. Both instruments go in the same way, with a difference, the PID was created to select and participate totally to the confusion between “therapy” and “elimination” whereas the prenatal diagnosis was invented for therapeutic purposes. In the “PID”, we produce an embryo to eliminate these which would not be compliant.
Of course, birth and death occur in the same world. In other words, in this world where the race for the powerful converted us in fragile people to welcome the unforeseen, the pain, the obstacle. But finally, it is just logical. Our ambition to control can only be disturbed by all our manifestations of our finiteness. To where can we go to get away from the hazard, uncertainty, and the fear to be feared?
1.Danielle Moyse teaches philosophy for 30 years. Associate Professor of the University and having a PhD, she is a researcher associated to the institute of Interdisciplinary researches on social challenges (IRIS, Paris). Her researches and books which come from it are particularly oriented to the description of possible resurgences of eugenics through the prenatal selection of births according to health criteria.