France debates right not to be born

A Paris court ruled last week that disabled children can sue doctors over not having aborted them.


The first thing doctors asked Willemijn Forest, after she gave birth last year to a baby boy diagnosed with Down syndrome, was whether she wanted to keep her child.

"After the delivery, they took him away immediately, assuming I did not want to see him anymore," says the Dutch woman who lives in Marseilles, the country's second-largest city. "I said of course I want to keep him. I was so appalled by their attitude."

These days, Forest, like many other parents here who have children diagnosed with mental disabilities, is no longer shocked.

Last week France's highest appeals court ruled that children with Down syndrome have a legal right never to have been born and could sue doctors that attended the pregnancy.

For parents like Forest, the ruling demonstrates a view, which she says is widespread in French society, that a disabled life is not worth living.

The judgment, which confirmed a previous ruling in a similar case, has caused a furor in France, sparking a national debate on a whole host of ethical issues.

In their Nov. 28 ruling, three judges said that a doctor had negligently failed to warn an expectant mother that pre-natal scans showed that her baby had the symptoms of Down syndrome. The baby, who was only identified as Lionel, was born in 1995. His mother argued that she would have aborted if she had been given a correct pre-natal diagnosis.

Although most in France agree that the parents should receive financial aid for Lionel's specialized care, many are offended by the nature of the mother's grievance: that her son had been allowed to be born.

The judges in Lionel's case decided that the doctor was "100 percent" liable for the cost of the care needed for the child, since the diagnostic error meant that the mother was not given the chance to abort. The court had already awarded damages of around $100,000, five years earlier. Last week's ruling ordered the sum to be substantially increased. The exact amount is to be announced at the end of January.

Parents of mentally disabled children who gathered outside the courthouse to hear the verdict, said they were outraged by the ruling.

"Certain judges still believe that it is better to be dead than to be handicapped," says Xavier Mirabel, spokesman for the Collective Against Handiphobia, a group that fights for rights for the disabled.

Mr. Mirabel says the most worrying aspect is that the ruling confirmed a similar decision by the same court last year. In November 2000, the court ruled that Nicolas Perruche - born severely disabled - should receive damages from his mother's doctor, who had failed to warn her of the dangers of rubella (also known as German measles) during pregnancy. That case immediately caused widespread consternation, but many thought the ruling was an exception.

Mirabel's Collective Against Handiphobia has since brought its own case, charging that the Perruche case amounted to a dysfunction of the justice system.

Though 54 percent of the French consider themselves Catholic, a nationwide poll last year by SOFRES, a leading independent polling agency, showed most respondents viewing abortion as justifiable. Legal abortion was introduced in 1975, with termination now allowed up to 12 weeks of pregnancy - and later, if there is a grave risk to the mother's health or if the fetus is diagnosed as suffering from a condition such as Down syndrome.

Roger Bessis, president of the French College of Echography (ultrasound scanning), says that new national statistics, due out shortly, will show that France carries out fewer abortions when genetic abnormalities are detected - because in France, unlike in other countries, there is no strict time limit for abortions.

"Doctors are not under pressure to terminate pregnancies when there is only slight doubt," he says. "We don't need to rush, so we can do more tests, and therefore have one of the most accurate rates of detection in the world."

Dr. Bessis says that, in Paris last year, 90 percent of prenatal genetic abnormalities were detected. In those cases, 8 percent of the mothers decided against abortion.

The Handiphobia Collective's Mirabel says he is concerned that the attention to the recent court cases has eclipsed other, more pressing issues. He says that, in northern France, 85 percent of parents with mentally handicapped children are sending them to specialized schools in Belgium, because the French system cannot accommodate them.

The cases have also alarmed doctors, who fear a growing number of lawsuits. Bessis says many specialists have already stopped carrying out prenatal scans and some are calling for a nationwide strike beginning Jan. 1.

"All of a sudden, the courts are deciding what is law. How can we accept this in a democracy?" he says. "The courts said the doctor was 100 percent liable, but everyone knows that medicine can never be 100 percent accurate. We do the best we can."

The French Roman Catholic church has called the rulings an insult to all families with disabled children. The bishop of Tours, André Vingt-Trois, president of the church's family committee said: "I think with great sadness of all families who have welcomed Down syndrome children, who have showered them with love and received great love in return. This ruling amounts to a declaration that such love was worthless."

The French government, which has kept mainly on the sidelines to date, is due to hold a parliamentary debate next week on the ethical and moral issues involved. Some politicians say the court hearings raised the question of eugenics (controlled breeding), while others maintain that the court awards had been made in recognition of a right to dignity.

On Wednesday, Bernard Kouchner, the health minister, said the case had left him "perplexed" and "ill at ease." Stressing the "value of every life," he said that a "handicapped life is not a pitiful one." But he added: "Nobody should question a doctor's medical responsibilities towards a mother, any harm done to her as a result of medical negligence, or challenge her right to have an abortion."

The minister for families, Ségolène Royal, sees the ruling as acknowledging the right to justice for people with disabilities. But she says she fears it could be seized on by pressure groups opposed to abortion.

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