Gene tests

Thanks to a recent ruling by the Federal Court of Justice, German women having a 'test-tube baby' have the option of letting the doctor check if the embryo which will be implanted in her womb is likely to suffer from any serious diseases. If the chances are high, she can decide not to have it implanted and try again.

Such pre-implantation genetic diagnosis (PGD) used to be illegal in Germany, but the decision in July found that such a test was legal if it was intended to exclude a serious handicap.

This caused consternation among Germany's Christians, not least those belonging to Chancellor Angela Merkel's Christian Democratic Union (CDU). Many argued that an embryo enjoys complete human rights from the moment a sperm fertilizes an egg, and after some deliberation, Merkel came down on their side last month.

Disunity among mainstream Christians

In her opening speech at this week's party conference, the chancellor gave a brief but unambiguous reiteration of her position: "I'm in favor of a ban, because we can't properly define the boundaries." She did however acknowledge that many party colleagues have a different opinion, and welcomed a frank debate.

Prominent CDU members – notably cabinet ministers Ursula von der Leyen and Kristina Schroeder - as well as Merkel's coalition partners the Free Democratic Party (FDP), see it differently, and have proposed a controlled use of PGD.

The issue divides other parties too, and when the issue comes before German parliament, it has been decided that the question will be decided by a free ‘conscience' vote, independent of party lines.

The main argument in favor of PGD simply points out that German law allows women to have an abortion even in the ninth month, if a test of the fetus shows a serious health condition. If more diagnoses could be carried out before implantation, many such traumatic abortions could be avoided.

"It's quite a contradiction that we don't allow the cells to be checked," argued CDU parliamentary state secretary Peter Hintze. "But we do allow the fetus to be checked in the womb. We should get rid of this contradiction."

Defining the boundaries

The particular 'boundary' that Merkel feels is so difficult to define is between screening out genes that might lead to illness, handicaps or birth defects and producing what is known as 'designer babies.'

From a scientific point of view, it's important to point out that 'diagnosis' is a slightly misleading description, since the process does not involve identifying an illness in an embryo. Instead, PGD is a test for certain genetic conditions that could lead to disease.

PGD was first developed in Britain in the late 1980s, and was first used for sex determination on embryos with diseases linked to certain chromosomes. Not long after the first successful births, it was banned in Germany under the 1990 Embryo Protection Act.

Its main application is for determining the presence of recessive genetic disorders like cystic fibrosis, Beta-thalassemia, sickle cell disease and spinal muscular atrophy type 1. The most common dominant diseases that can be screened by PGD are myotonic dystrophy, Huntington's disease and Charcot-Marie-Tooth disease.

It is also used to test for chromosomal abnormalities, which if excluded can increase the chances of IVF treatment being successful, by reducing the rate of miscarriages.

Broad consensus in Europe

PGD is allowed in Britain, but only for determining the presence of serious hereditary diseases or chromosome disorders. In France, the procedure is only allowed if an inherited disease has been identified in one of the parents, and only if both parents have been living together for two years. A similarly limited application of PGD is also in place in Belgium, the Netherlands, Belgium, Italy, and Greece. Meanwhile an outright ban is in place in Austria, Ireland and Switzerland.

But there is a fairly ambiguous legal position on PGD in many countries, where it is not expressly banned, but is implicitly prohibited through regulations on embryo research – this is the case in many US states.

Sascha Rudat, spokesman for the Berlin Chamber of Physicians, told Deutsche Welle, "The problem is that couples where hereditary diseases are present, could say, 'We're going abroad to have it done there.' And of course that isn't desirable. That's a lot of stress, so I think we should re-consider whether a total ban is a good idea."

Rudat says the risks and stress of travel to a foreign country only make a complex and emotionally-charged treatment even more difficult.

"Some couples are already in a stressful situation," he said. "As I said, they are often couples who already have certain hereditary illnesses, who may already have had a handicapped child, and who only want to do everything right. If they travel it just adds extra burdens."

For this reason, Rudat believes that a regulated application is the only fair solution. "We don't consider a total ban desirable," says Rudat. "We think that PGD should be possible under very strict conditions. They are of course important."

Author: Ben Knight
Editor: Rob Turner