If the world is afraid of genetic disorders
Eliminate the imperfect
Looking around we realize it. We no longer see “imperfect” children, marked by genetic disorders. These children are censured by the media, sheltered by families from a society that does not accept them despite its many protestations, but above all they are aborted. Prenatal scans are carried out and once defects are found, all too often birth is prevented. The worrying aspect is that with our sifting and selecting we are no longer surprised by this: it is the norm.
The facts are important. The register of congenital malformations in Emilia Romagna — one of the few Italian sources that can be consulted — reveals that the abortion rate of fetuses with Down syndrome is over 60% of the total (and more than 70% among Italian women); more than 50% of girls with Turner Syndrome (causing shortness and low fertility) are aborted. The first case involves stunted intellectual development and the second, stunted physical development: reason enough to destroy them?
Eurocat, a European register, shows that in cases of orofacial clefts — harelip or cleft palate, a mild and operable condition — the abortion rate is over 10%. In France 96% of fetuses with Down syndrome are aborted and recently a Parisian deputy declared in Parliament: “The real question I ask myself is why are there 4% left?”. In 1996 the magazine “Archives de Pédiatrie” launched a j’accuse against the prenatal elimination of fetuses on the basis of future shortness; this characteristic has drastically decreased in the social panorama and certainly not because a cure was found.
This is called secondary prevention and these services are increasing. In many States all pregnant women are offered tests to reveal possible factors of Down syndrome in fetuses, drawn from maternal blood or through amniocentesis or by measuring indicators of the syndrome such as nuchal and nasal bone during routine ultrasounds and performing prenatal genetic screening. Parents and doctors should realize that seeking a direct or indirect response with regard to the chromosomes of the fetus, when there is still time for an abortion but absolutely no time for treatment, is at the very least ambiguous, especially if one believes in the sacredness of the human person.
The disappearance of people with genetic disabilities from the social panorama is also due to reasons such as family shame and society's inability to culturally accept the different, who feel like genetic outlaws and are therefore kept at home. The fall in numbers resulting from prenatal selection or social exclusion is an obstacle to research therapies. If as much funding were invested to cure genetic disorders as that spent on preventing unhealthy children from being born, considerable progress would be made.
Genetic disorders are, of course, undesirable, but they should not make the person affected undesirable. These people are faced with difficulties in life but are they truly so unbearable as they are made to out to be? Scientific studies show paradoxically that if he is not rejected, the sick person has a chance of higher quality of life than his or her peers. This is the case of adolescents with spina bifida (“Quality of Life Research” 2006) or of those with serious physical disabilities (“Quality of Life Research” 2005). Quality of life for people with Down syndrome is much higher than the media reports, according to the important journal “Social Science and Medicine” (September 2001). This means that the affected person is not defined by his or her disorder but by the surrounding social environment, as shown by a recently published study in the U.S. on the quality of the life of mentally handicapped people. It is at this level that one should intervene economically and culturally.
Thus more solidarity. Solidarity also means information, that is so frequently unbalanced. In France, for example, associations of the affected — those who have their finger on the pulse of the illness — are by law kept away from accessing information made available to women facing a pregnancy that could become undesirable due to the imperfection of the fetus. The media draw a picture of disability that rarely strays from sterile compassion, when in bad taste they simply do not insert the disabled person in sensational broadcasts.
Instead the imagined reality is worse than the real one. In a frightened and prejudiced world, the search for imperfection and the elimination of the “imperfect” patient have become a common and well-known social norm: banalizing evil which no longer seems to bother anyone.
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