News about Down syndrome show the contradictions of our society regarding Down syndrome people: "We are all disconcerted by this handicap. No one can deny the humanity of these children. And yet…The French society has difficulties to face it”, the newspaper Libération recently cited.
Strengthening of the screening
So, the National Consultative Ethics Committee (CCNE) pronounced, on 17th November 2009, an opinion on the prenatal diagnosis (PND) and the preimplantation diagnosis (PGD) recommending to extend the screening of Down syndrome. The PGD, admitted as "transgressive" but liable to avoid "the expected pains of a human life", is authorised to allow the selection of embryos free from particularly serious genetic diseases, recognized as incurable at the time of the diagnosis. The Committee recommends to "remove the current prohibition to proceed to the detection of Down syndrome before transferring the embryos not affected by the researched anomaly". Pr Israël Nisand, head of the Department of Obstetrics and Gynaecology of the University Hospital Centre (CHU) of Strasbourg, comments: "We have the chromosomes before the eyes, it does not cost anything to examine if the embryo we want to implant is not affected with Down syndrome. And this can then avoid resorting to abortion". Such a measure is up to date prohibited since the law specifies PGD can only concern the research on a single disease at the same time. Moreover, no list of diseases existed in order to not stigmatize the patients. By listing the Down syndrome, thus the CCNE stigmatizes Down syndrome people. After the strengthening of the screening from the first quarter of the pregnancy and whereas 96% of Down syndrome foetuses screened are aborted, the opinion 107 goes further with eugenics.
Compassion, for the CCNE
During the press conference announcing this opinion, the philosopher Pierre Le Coz, member of the CCNE, affirmed: "We consider that we are not in the eugenics.[…] As long as the couples have the freedom, there is no encouragement from the State, there is no eugenics.[…] We could say that there is liberal eugenics, but conserving a concept with double entry, individual eugenics or political eugenics, generates a confusion. However, we want to clarify. People must not feel guilty by suspecting them of eugenics". This selection of human beings would be motivated by a "praiseworthy" intention: "By humanity, we avoid pain. It is a humanist, compassionate, even praiseworthy motivation, because the families are free from the weight of the tragedy". At the most, may we talk about "pressure of the society"? Jean Léonetti, MP, also considers that there is no eugenics in a strict meaning because, in the case of PGD, we refer "to what this being would have wanted going through the person who can testify for him, namely his/her mother”.
Xavier Lacroix, member of the working group who pronounced this opinion, affirmed in the newspaper La Croix: "Globally, this text has a good ethical content and I do approve it. Except on this point". For him, if it "does not deal with collective and coercive eugenics as the history experienced in some totalitarian regimes", there is "a liberal and individual eugenics which can lead to the same result as a collective policy". The CCNE is based on "a pragmatic and obviously utilitarian argument. […] But in the ethical thought, the utilitarian balance must not always have the last word". "The PGD is already transgressive on an ethical level since it leads to destroy the non-conform embryos. But it is limited to serious diseases which is already a compromise. If we extend it to the research on Down syndrome, a disease which is already subject to a true beating, we go out of this frame. And what will avoid, after the Down syndrome, to even extend PGD to the research on many other diseases? "
An exclusion opinion
Jérôme Lejeune Foundation immediately published a press release, to denounce, in the year of the fiftieth anniversary of the discovery of Down syndrome, "an additional step which confirms the will to eradicate as soon as possible any Down syndrome human being and will reinforce the eugenics". Its chairmen, Jean-Marie Le Méné, affirms that the CCNE’s opinion was not surely "a moderate opinion inspired by wisdom", specifying moreover that what will " ‘justify ‘ the research on Down syndrome, is only the look at exclusion a priori on Down syndrome people, exclusion already created, maintained and financed by the State through its eugenic policy of generalised screening (PND)". He was worried this opinion extends even more the field of the PGD. Thus he wonders: in the name of the pain of women being pregnant with Down syndrome baby, the CCNE recommends to screen the embryos submitted to PGD, but why not extend it to all embryos conceived by IVF? ""In the name of what the classic IVF for infertility would not have the right to pregnancy free from the risk of Down syndrome? In the name of what one should impose to women, who have already difficulties to conceive, the pain to wait the first months of pregnancy to be faced with the screening for Down syndrome when the PGD offers a possibility so simple?
The opinion 107 also proposes to extend PGD to predispositions to cancer and to maintain the use of PGD in the case of saviour child, contrary to the recommendations of the Council of State. Thus Jérôme Lejeune Foundation interpellated "solemnly the national representation […] It will be asked to state representatives coherence and courage and to the State to take strong and concrete measures, except to confirm the collective choice of the eradication of Down syndrome children".
A hope of treatment
Symbolically, the opinion 107 was pronounced on 17th November 2009. On the 18th, an American researcher group from the University of Stanford published a study in the journal Science where it affirmed it succeeded in restoring the intellectual capacities of Down syndrome model mice. The scientists have stimulated the production of norepinephrine, a hormone in the hippocampus which has a key role in the process of attention and memorisation questioned by the disease. Then it found that the mice get back intellectual capacities similar to normal ones. "We have good reasons to believe that this type of therapy could have beneficial effect on Down syndrome children", affirmed the main author of the study, Ahmad Salehi.
In conclusion, we can see once again that the progress is not in the side of transgression.