The second edition of the European Bioethics Forum called “Procréation : la famille en chantier ” treated with the beginning of life. The speakers have particularly treated questions related to prenatal diagnosis (PND) and medically assisted procreation (MAP). If a transgressive and libertarian thought prevailed, nevertheless the question of the PND has gathered the majority of the speakers.
The PND: a straightjacket
Pregnancy professionals, philosophers, and pediatricians showed that PND is paralyzed by three notions:
– The obsession of “normality”. Philosophers cited Canguilhem (1) who defines the “biological normativity” as: “a living person is normal in a given environment when she/he is the morphological and functional solution found by the life to meet all the requirements of this environment” (2).
Then a person is considered as “normal” when she/he can meet the performance, profitability and success requirements of our society. Today, the PND precisely aims at detecting, according to pre-established criteria, if the child is normal. Since then, we wonder: what’s happening if the child is detected as abnormal, in other words outside the measures fixed by the majority? Is it less human? With this “obsession of the standard”, denounces Didier Sicard (3), “we reduce the future of the human to a certain number of biological and imaging criteria which make us lost our humanity”.
– The governance of the fear. The PND increases the parent’s fear to have a disabled child. A legitimate fear for her/his education, her/his integration and her/his future in the society. For sure, the law of 2005 related to the equality of rights and chances, the participation and the citizenship of disabled people, aims at reducing this fear… But according to Antoine Spire (4): “this law is not applied; there is a big problem to welcome disabled children in the schools”.
In this context of fear and societal deficiency for welcoming most fragile people, how can it be affirmed that the parents are really free to choose?
– The quest of profit, which guided the evolution of the PND. Israël Nisand, obstetrician gynecologist, initiator of the Forum, affirmed it in his inaugural speech, being chocked by passing in 1997 from diagnosis to screening, without consulting citizens.
The sole reason of this generalization of the screening is an economic calculation:
“A ‘miscarriage’ does not cost anything to the state. The cost for diagnosing Dow syndrome is equal to two years of life of a Down syndrome person. The economic challenges face the life challenges”.
He said to Gènéthique that he assisted to pressures from international companies on political decision makers in 1997. The facts are here: 96% of Down syndrome screened fetuses are eliminated due to economic calculation.
For most speakers, there is eugenics in France, of which Down syndrome fetuses are the main target.
Romain Favre, gynecologist, offends of statistics: 58% of interviewed physicians prescribe Down syndrome screening test without previous discussion, 43% of women think amniocentesis is mandatory, 16% of them think that the pregnancy termination of a fetuses diagnosed with Down syndrome is mandatory. For him, the eugenics approach of the PND is not in doubt: public authorities make the clear choice but “the physicians are not aware of this drift”. Moreover, he notes that the medicine and the society are marked with some notions: the culpability to have a disabled child (C.Richet), the biocracy, aiming at favoring the birth of elites (E.Toulouse), the biopower, based on the alliance between physician and institutions to direct the conducts to a standard (M.Foucault). Yves Alembik, pediatrician, talked about financial eugenics and denounced an “authoritarian society when everybody thinks to have the choice”. Finally Patrick Leblanc (5), obstetrician gynecologist was worried about “a prenatal screening to eliminate resulting in a preventive eugenics”.
What are the solutions?
Few speakers propose them outside a real application of the law of 2005. Yet, if a specific effort is to be made in matter of integration of disabled people in our society, this is not sufficient. Only three physicians ask to act from the general information of the screening, or at the moment of announcing the disability. In fact both proposals should go together: indeed, if from the proposal of the screening, the parents are submerged with anxiety-provoking information and tests, how can we reassure them a few weeks later when we announce them the disability of their child?
For Dr. Alembik, the emergency is first to accompany the announcement of the disability. Dr. Leblanc confirms that an “announcement consultation” would be useful to relieve parent’s anxiety and to better explain them the screened disability. Also he insists on the need to modify the law of 2011 which transforms practitioners in “risk merchants”, obliging them to inform all pregnant women on Down syndrome screening, from the first consultation, even when they do not present any risk. “This generates the demand of prescription”. Finally, Dr. Favre would want to take the physicians out of their loneliness by introducing, in their clinics or hospitals, associations involved for disabled people in order to better inform the parents faced with disability and to help them to see first the person of their child before his/her disability.
1. French philosopher and physician, author in particular of “Le normal et le pathologique”, published in 1943, released in 1966 ;
2. Georges Canguilhem, “Essai sur quelques problèmes concernant le normal et le pathologique” ;
3. Honour chairman of the CCNE ;
4. Journalist, chief editor of the magazine “Droit de Vivre” journal de la Licra, and speaker in the round table “La France est-elle un pays eugénique” in the European Bioethics Forum ;
5. Coordinnator of the Commette to save prenatal medicine.