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No right not to be born

The french government has lastly rejected the controversial "perruche ruling" put an end to it: disabled people had been granted a right to compensation for their existence

Since the 17.November 2000 france’s disability associations and the pranatal diagnosticians are on the warpath. On this day, the highest french civil court, the court of cassation, awarded damages to nicolas perruche, now 18, because his mother’s rubella had not been diagnosed during her pregnancy and he had been born with multiple disabilities. The perruche ruling has since been upheld twice and the court of cassation has also awarded damages in another similar case (right not to give birth).

The ruling has not only caused anxiety among parents of disabled children, but has also led to an increasing number of ultrasound specialists refusing to make detailed statements for fear of legal repercussions. On 1.January a strike of pranatal diagnosticians was called. The draft law presented by the government on thursday excludes direct compensation for the person concerned, but is already in the crossfire of criticism.

"No one can claim damages based on the mere fact of his birth, even if he was born disabled." this is the first sentence of the bill on compensation for people with birth defects, which is to pass the senate at the end of january. A phrase, as the minister of solidarity and labor elisabeth guigou admits, which was included in the text of the law mainly to calm tempers, because no one can seriously ame that the court of cassation actually has a "right not to give birth to disabled people" wanted to establish.

It is more likely that the perruche judgment is a kind of "operational blindness" of the judges, as the editorial director of the political weekly magazine "le nouvel observateur", jacques julliard notes in a commentary: judge "cannot be satisfied with applying purely legal solutions in concrete situations without worrying about the real consequences." julliard even fears a kind of "tyranny of jurisprudence", which would cause a tendency among the judges to be a "irresponsible" of judges who are pruning themselves on legal texts. In fact, the perruche ruling had given some parents the impression that damages for life could be claimed if a diagnostic error during pregnancy had caused a "therapeutic abortion" prevents has.

The new text of the law now seeks to clarify that, admittedly, there can be no causal connection between a disability and a misdiagnosis: "a person born with a disability resulting from a medical error may receive compensation for his or her damages if the erroneous act directly caused or aggravated the disability or did not allow measures to be taken to mitigate it." further, the legal guardians are guaranteed compensation for damages, which is "corresponds to the increased costs incurred in caring for a disabled child". Although the minister of health, bernard kouchner, preferred to speak of a "compensation of the society" the government, however, pointed out in the course of the parliamentary debate that the disabled person is entitled to this compensation for the rest of his or her life. In this way, the legislator has finally listened to what is probably the greatest concern of parents of handicapped children: what will happen to my child when i am no longer alive??

However, it gets hairy when it comes to the definition of the diagnostic error that could result in a claim for damages by the parents. The text provides for such an abortion in the case of "disability of markedly severe severity" which occurs during pregnancy as a result of an anomaly "serious error" was not diagnosed. For the guild of pranatal diagnosticians, the question now arises as to where the borderline between a "serious error" and an unavoidable.

After all, 40% of anomalies are not diagnosed in spite of the increasingly powerful ultrasound technology "in time" diagnosable, i.E. In time for an abortion or at least the possibility to decide on it. 80% of french couples decide to have an abortion when diagnosed with down syndrome. French ultrasound specialists have not been shy since the perruche ruling in pointing out that their science is anything but exact. No wonder, since the prospect of a possible legal repercussion has resulted in a 50 percent increase in their insurance premiums. For the associations of the disabled, too, the new regulation contains, despite the long "clarification that has long been needed", a fly in the ointment: why should only parents of handicapped children, who have been deprived of their rights on the basis of a diagnostic error, be entitled to the solidarity of society?? Even if it is only of a financial nature?

However, the perruche ruling and its current clarification by the government has not only been disadvantageous. On this point, at least, everyone agrees: the somewhat unfortunate ruling has triggered a broad social debate in france that has long been longed for, and not only by disability groups. Among other things, the ruling also raised the question of whether the new perspectives that pranatal diagnostics literally opens up for expectant parents and medical professionals also confer the right to decide under which circumstances an existence can be made happy and under which it cannot.

The national ethics council warns against "pranatal euthanasia", could expose the parents, who decided for their handicapped child, to the reproach, why they gave that to their offspring "" have. However, the debate also shows that the western meritocracy wanted to completely exclude even the smallest risk, even the smallest doubt, and lulled itself into the belief that technological progress could make this possible.

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