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To be tested positive means that one day you will have the disease, that dreadful disease which you have seen slowly but surely destroying your father or mother. “Now the problem”, explains a geneticist “is that you are not meant to know your destiny in advance”. Man is not meant to know how or when he is going to die. And that is the sentiment shared by the people who are at risk: 90% of them would prefer not to know. Only 10% ask for the test, among whom, there are two thirds of women and one third of men. Josué Feingold, another geneticist who receives test candidates at the ‘Pitié-Salpêtrière’ hospital, explains: “Women are doubtless more concerned because of pregnancy. Men just stick their heads in the sand, and they are perhaps right to do so.” There are moreover very few requests for prenatal screening. Without doubt this is because parents tell themselves that in forty years, there will therapeutic progress.”
Four months of reflection
Do you go through with the tests? In the face of the extremely vulnerable people who come to the genetic consultation rooms, the international medical community has put into place a damage limitation procedure. In France, the test candidate has to meet a neurologist, a psychiatrist, a psychologist, a geneticist and a social worker. The process takes place over roughly four months, time to make the test applicants understand that they are going down the path of no return, and that their lives will never be the same as before, whatever the result might be. In a general way, the candidates are not pushed into doing the test. The idea is that “In this illness, it’s important to save time” Along the way, about half of the candidates will abandon the test. In six years, out of 439 requests at La Pitié-Salpêtrière, there were 224 abandonments and 215 results requested.
Who are the ones who persevere? According to Joshua Feingold “The test can be beneficial for those people who do not want their children to have the disease, and for those who want to plan their family and professional life.” As the neurologist, Alexandra Durr and the psychologist, Marcella Gargiulo write, “sometimes the necessity of knowing becomes imperative for whoever thinks that this will help him get out of his paralysis” Sometimes, doubt can become a drug too (“I am/I am not”) and uncertainty a way of being and of developing oneself.
The medical team could ask the candidate: “What are you going to do with your result? Shoot yourself? Take safeguards?” But how can one imagine in advance how they would react to the announcement of the result? How can one project oneself into the future? Vanessa’s story demonstrates that the procedure is not always efficient. What the team is trying to show is that the test does not necessarily help you to get on with your life. All the more so for the young people whom the diagnostic centres see coming in their droves, most often young girls, sometimes as young as 18. “Young subjects in a situation of non-stability, that won’t help them to give themselves structure. Why ruin your life at 20 knowing that when you’re 40, you’ll fall ill, when you could die in a car crash well before then, like any other person?” asks a geneticist.
And the reactions to the results? “Those who are told: ‘you haven’t got the gene’ aren’t dancing for joy” Feingold assures us. “People can’t bear the Mendelian lottery very well. But it’s important to know that God is playing dice. The psychological cure takes time. People have to realise, little by little, that they are not ill”
Moreover, one often sees depression after a negative test, because, the life of an “at risk” person has been constructed around the illness, because that person is hit with survivor syndrome slap bang in the face: the culpability vis-à-vis family members who are themselves ill, is unbearable.
Doubts