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Row over test for Down syndrome

July 6, 2012

In the past it was called mongolism, today it’s referred to as Down's syndrome. A new blood test can help detect the genetic defect within unborn babies - causing an ethical dilemma.

DNA sampling in a lab
Image: picture-alliance/dpa

"We're human beings, too, dammit!" - That's what Berlin-based actor Sebastian Urbanski shouted out at a government press conference on Thursday in Berlin. His appeal was aimed against the new form of prenatal blood test that helps detect Down's syndrome in unborn babies, a disability caused by a chromosome aberration. Urbanski himself is living with the syndrome, the severity of which can vary greatly. The much-debated test is set to be approved in Germany within the next few days, following months of heated arguments.

Physicians, pharmaceutical companies, legal practitioners, politicians and advocacy groups for the disabled have been discussing the ethical and legal legitimacy of the test. An approval certificate, commissioned by Hubert Hüppe, the German ombudsman for the disabled, has now been presented in Berlin. The conclusion of its author, legal expert Klaus Ferdinand Gärditz, is clear: Prenatal blood testing for Down's syndrome is illegal, a violation of the anti-discrimination law of the constitution, as well as the law on genetic diagnosis.

Positive results usually lead to abortion

Hüppe described the testing for Down's syndrome as a sort of dragnet investigation, aimed at segregating and killing the disabled. It would go against medical ethics, as "it comes with neither medical nor therapeutic benefits" because Down's syndrome is incurable and cannot be treated. The blood test would be almost exclusively a selection process, discrimination in its worst form, he said. For Grädlitz the test aims at commercial profits, far removed from the idea of providing a cure. Price-tagged at 1200 euros, it helps to detect only one genetic defect - unlike the amniotic fluid analysis, which can diagnose a number of risks. Whenever a trisomy - such as the Down's syndrome (trisomy 21) - is detected, it is estimated that 90 per cent of the cases result in an abortion.

Spanish actress Lola Duenas and German voice actor Sebastian Urbanski
Sebastian Urbanski next to actress Lola Duenas at the Berlin movie launch of 'Me Too'Image: Getty Images

Recently, the bishop of Münster, Felix Genn, had condemned a “fantasy of almightiness” within humans, which dreams of controlling everything down to the genotype. Against this, the head of the German Medical Association, Frank Ulrich Montgomery, defended the blood testing: "Our society favors prenatal diagnostics." It would be impossible to now turn back time; and using this form of blood testing would be better than conducting a risk-laden amniotic fluid analysis, he said.

An easy test making the decision more difficult

Gabriele Frech of Cara, a counseling office for pregnancy and pre-natal diagnostics in Bremen, has called the new form of diagnosis "problematic," as it increases the pressure on mothers-to-be. Since life with disabled children is often portrayed as difficult, women would struggle to make the right decision. The newly available test would only increase this stress, as it supposedly helps avoid this suffering, she said.

Hubert Hüppe, German ombudsman for the disabled
Germany's ombudsman for the disabled, Hubert Hüppe, doesn't approve of the new blood testImage: picture alliance / dpa

In addition, Frech said, the test would open the door for further diagnostics in the future: "Who isn't to say that very soon we will be able to read out the genome of the embryo. Then anything that's not in line with the norm will be up for scrutiny."

Should we do what we can do?

From a simple technical point of view, it is, of course, an advance, Frech said. After all, an examination of the amniotic fluid is more dangerous and carries the risk of miscarriage. Still, the ethical dimension stretches beyond that. And that's why the counseling office is preparing a comprehensive campaign for the fall: "We want this ethical discussion to go into another round, because here we're dealing with a fundamental question: Do we, as a society, want to weed out unborn babies that have genetic defects?"

The German government, too, has recognized the problem that technical possibilities advance at a faster pace than the awareness that is needed to deal with them. At the moment, the German Ethics Council is working on a statement on the future of genetic diagnostics.

In the end though, Gärditz' current report cannot be taken as a legal basis for further steps. After all, several more reports are possible, reports that may very well come to different conclusions.

Author: Günther Birkenstock / ag
Editor: Simon Bone