sexta-feira, 9 de setembro de 2011

If the world is afraid of genetic disorders - Destruction of the imperfect

by Carlo Bellieni

In L' Osservatore Romano

We realize it when we look around. We no longer see “imperfect” children, who are marked by genetic disorders. These children are censured by the media, sheltered by families from a society which does not accept them despite many claims, and above all are victims of abortion. We scan thoroughly before children are born and, once found, too often they prevent them from being born. The serious aspect is that our sifting and selecting no longer surprises us: it is the norm.

The facts are important. The registry of congenital malformations of Emilia Romagna – among the few available Italian sources – reveals that the rate of abortion of fetuses with Down Syndrome is above 60% above the total (and more than 70% in Italian women); more than 50% of girls with Turner Syndrome (resulting in shortness and low fertility) are aborted. The first case involves delayed intellectual development and the second delays physical development: reason enough to destroy them?

Eurocat, a European register, shows that in cases of orofacial clefts – an opening of the lip or palate, a mild and operable condition – the abortion rate is more than 10%. In France, 96% of fetuses with Down Syndrome are aborted and recently a Parisian Deputy in Parliament declared: “The real question I ask myself is why is there still 4%?”. In 1996 the magazine “Archives de Pédiatrie” launched an j’accuse against prenatal elimination of fetuses on the base of future shortness, this characteristic also dramatically decreased from the social panorama and certainly not because a cure was found.

This is called secondary prevention and the services to increase it are multiplying. In many States all pregnant women are presented with research of indicating factors of Down Syndrome in fetuses from maternal blood or amniocentesis or by measuring the indicators of Down Syndrome (nuchal and nasal bone) in all fetuses during ultrasounds, also running prenatal genetic screening. Parents and doctors should reflect on whether 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, at least if one believes in the sacredness of the human person.

The disappearance of people with genetic disabilities in the social panorama is due also to another reason: society's inability to accept culturally different and the shame of families, who feel like genetic outlaws and therefore keep the afflicted children inside. The decrease in the numbers of prenatal selection or social exclusion leads to preventing research therapies. If economic investments were made to cure genetic disorders equal to those made to prevent sick children from being born, we would make notable progress.

Genetic disorders are, of course, undesirable, but they should not make the affected person undesirable. These people open prospectives to a difficult life but are they truly so unbearable as we are made to believe? Scientific studies show that paradoxically, the sick, if external conditions are not off-putting, rate their quality of life higher than their 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 illustrates, 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 rather by the social environment in which they are immersed, as shown by a recently published study in the US assessing the life of mentally handicapped people. It is on this level that one should economically and culturally intervene.

Therefore more solidarity. Solidarity means also information, that often is unbalanced, in so much as the example in France, the associations of the affected – in other words, those that have their finger on the pulse of the illness – are held by law away from the flow of information available for pregnant women which could be undesirable due to the imperfection of the fetus. The media traces a portrait of disability which rarely strays from sterile compassion, when they do not insert the disabled person in sensational transmissions in bad taste.

Instead this is more damaging: we are left with an imagined reality rather than a real one. In a scared and prejudiced world, the search for imperfection and the destruction of the “imperfect” patient become a common well-known social norm: a banality of evil which does not seem to bother anyone.