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Down's syndrome

Gederts Gelzis, RigaAugust 13, 2012

A controversial court case has angered disability groups across Europe. A Latvian mother has accused doctors of breaching her rights after her daughter was born with Down's syndrome.

A woman undergoing an ultrasound
Image: Fotolia/Sven Bähren

In 2002, a 41-year-old Latvian woman, Laura (not her real name), gave birth to a child with Down's syndrome. It was only then that the she found out that mothers over the age of 35 fall into a higher risk category. Many doctors offer prenatal screening tests to detect such chromosomal disorders - and some parents decide to terminate the pregnancy based on the results of those tests.

Laura's doctor apparently failed to do this. She therefore lodged a complaint with the health authorities in a bid to get compensation - but judges in Latvia rejected the claim.

So Laura has taken her case all the way to the European Court of Human Rights (ECHR), claiming her right to a proper family life has been violated. She wants around 300,000 euros ($371,000) in moral damages to provide an allowance for her child.

"We're basing our complaint on two articles of the European Convention on Human Rights," her lawyer, Solvita Olsena. "First, the right to respect for private life prescribed by article eight. In other words, the right to have a reproductive choice and to know about reproductive matters. And secondly, we think there's been a breach of article six of the convention because she was denied a fair trial."

Olsena claims there is evidence of malpractice on the part of the doctor that was not allowed by the court in Latvia. Laura is now facing legal costs of around 4,000 euros, which she cannot afford.

Rights groups up in arms

Her quest for justice has provoked an angry response from more than 20 associations who work with people suffering from Down's syndrome. Earlier this year they launched an online petition calling on judges in the ECHR in Strasbourg to reject Laura's case. Liva Veiherte from the Latvian Down's Syndrome Society was among those who signed the petition.

"This is the first case where a mother has asked for the fundamental human right to euthanize her unborn child. And I really want to stress that we are not talking about abortion which is right or wrong depending on one's moral standards. This is about euthanasia which would be carried out in the last months of pregnancy," said Veiherte.

Veiherte believes people shouldn't be discriminated against because of genetic defects. And people with Down's syndrome, she says, don't usually suffer any physical pain because of their condition. They go to school, have jobs and can live full and independent lives.

Personal experience

Laimdota Landisa has also signed the international petition against Laura's case. She herself has a 13-year-old daughter who has Down's syndrome. And like Laura, Landisa was 41 when she gave birth.

"Victoria was our fourth child, and the long-awaited girl in the family. We didn't suspect any disorder because I'd had a sonogram, which usually detects irregularities during pregnancy. And the doctor didn't offer any additional genetic screening."

Landisa says that Victoria's Down's syndrome came as a shock and turned her life upside down. She considered rejecting the baby but eventually decided to take her daughter home. Her husband, though, couldn't accept this decision, and he left the family. Landisa went back to work and has raised Victoria alone along with her three other children. She says it's been a rough ride, but it's been worth it.

"I realized that I wouldn't cope, and I sought help," Landisa explained. "I joined a support group, and from early on I took Victoria to various day care centers. But I raised her. I don't know how it is in other countries, but here in Latvia mothers have to manage everything themselves if they want to raise children with disabilities."

Legal controversy

According to Henrietta Roscam Abbing, an editor at the European Journal of Health Law, Laura's claim has caused an uproar over issues which are not even the essence of the case:

"The court will not judge on those issues because the case is not about that," she told DW. "It's about informed consent and whether the woman was given a choice about taking screening test or not. And that is personal autonomy, which is in the European Convention of Human Rights. You shouldn't bring that in the light of abortion and of the disabled. That's what disturbing me very much."

The case has only just come before the ECHR, so it will be months before judges deliver their verdict. In the meantime, disability rights groups are continuing to collect signatures for their petition.