"Changing the way we see them", is the combat of Emmanuel Laloux, president of the collective Les amis d’Eléonore (Eléonore”s Friends), which he founded, and father of Eléonore, a young woman with Down syndrome now aged 27, who has a permanent part-time job and her own apartment. The journalist explains that "this combat is far from being won. Soon, with a simple blood sample taken during the first weeks of pregnancy, a woman will be able to know if the foetus she is carrying has chromosome disorders, genetic diseases or predispositions to certain cancers. And be able to terminate her pregnancy well before the legal time of thirteen weeks." Still, Emmanuel Laloux says that he is relieved that he did not know that his "baby was to have Down syndrome." "Fortunately, we did not know. All we knew about Down syndrome was just the clichés that society uses, so we might have been led to adopt the eugenic solution."
In France, the bioethics laws of 2004 prohibit "the implementation of any eugenic practice leading to the organisation of the selection of persons," and "the Penal Code punishes this crime with thirty years of imprisonment and a fine of €7,500,000." Nevertheless, the arrival of these "new techniques of early scanning, without danger for the future mother and her foetus," amounts to a veritable "selection of the children" to be born. Regarding these new tests, Pierre Le Coz, philosopher and former member of the National Consultative Committee on Ethics (CCNE) says that "we still find it hard to grasp their full significance, but they form a revolution, an earthquake." He adds that he can see the emergence of a "society that tracks down and targets those to be eliminated."
There are two types of tests available today: the first, Prenatest, has been marketed in Germany, Austria, Lichtenstein and Switzerland since August 2012. It enables the "detection, after ten weeks of gestation, of the circulating DNA of the foetus in the maternal blood," and the "detection, in 96 to 98% of cases, of whether the child to be born is a carrier of one or more of the genetic diseases that are being screened for." This test, "developed for the specific detection of Down syndrome […], could be marketed in France within a year by the Cerba laboratory which has requested permission from the health authorities." The second test is called ISET. It "enables doctors to intervene at an even earlier stage, within five weeks of amenorrhoea" and was developed by a team at INSERM led by Patrizia Paterlini-Brechot. She points out: "we will be able very soon to diagnose, in a certain and non-invasive manner, Down syndrome and also all the genetic diseases of the child to be born which can be diagnosed at the moment by invasive methods." The researcher, "who was granted a licence from INSERM to market the patents taken out by her team," recently set up a company, Rarecells, and "hopes to sell the ISET method" abroad this year.
In France, the green light for marketing the new test has not been given, and the CCNE was consulted for its opinion by the Ministry of Health last July. This opinion, due by the end of 2012, is still being drawn up owing to "the complexity of the issues at stake." Several questions arise: "should these non-invasive tests be authorised in France?" and, to whom should they be proposed?
Alexandra Benachi, head of the gynaecology-obstetrics department of Antoine-Béclère hospital (Clamart), says that she has "already tested the Prenatest with future mothers, for the Cerba laboratory." She adds that the test ought to be reserved for "screening women with a high risk of Down syndrome." However, she is convinced that "in the name of equal access, within less than five years all Frenchwomen will be offered this test instead of the blood screening in the first three months."
For a certain number of specialists, the marketing of this new test is very worrying. Dominique Bonneau, a geneticist in the university hospital of Angers, warns against "the very serious errors that could be made with foetuses. Each one of us carries 100 to 200 mutations of the encoding sequences of our genes
" and "in the majority of cases, these mutations are of no consequence. But if these tests are made freely available without serious medical explanation, the uncovering of these mutations risks being wrongly interpreted. No pregnancy at all will be regarded as normal! Genetic anomalies will be found in all foetuses and we will no longer know what to do.
" The journalist asks the question: "even if there is no uncertainty about the diagnosis, will the parents be able to choose in complete independence to bring a diseased child into the world?
" Nicolas Journet, a screenwriter aged 31 who has a rare genetic disease, Marfan syndrome, which weakens mainly the eyes, the skeleton and the cardio-vascular system, says that "the question of choice is distorted.
" Taking the example of people with Down syndrome, he adds: "the parents know that society accepts them badly, and that very few structures can take charge of them. So in fact this is not a choice!
" These new tests raise a question, that of "normality, the acceptance of disability and disease."
Lastly, he points out, "with these tests, it is as if the doctors were no longer involved in treating patients but in sorting them.
Jean-Marie Le Méné, President of the Fondation Jérôme Lejeune which finances therapeutic research on Down syndrome, protests: "What is the aim of these new tests? To reach zero Down syndrome?
" He adds that this new test "is a false form of progress. The outcome of screening is elimination. It is the determination to ensure that these children are not born. This is not to the glory of a society that boasts about respecting differences and helping the weakest.
" In the same vein, Jacques Testart, the biologist whose work led to the birth of the first test-tube baby in 1982, says that he deplores "the implacable march towards eugenics
" and points out that "we are moving towards a customised humanity that is competitive, productive and not humanistic.
The journalist concludes: "these questions show that a national debate on these tests is indispensable, as well as a very strict regulation of their use to prevent abuses."