Embryo Screening: The Story Of Germany’s First PGD Baby

Pre-implantation genetic diagnosis (PGD) was only recently legalized in Germany. The first German child to have been screened was born on Jan. 27 in Lübeck. Her parents and doctors explain why - and how - they reached their decision.

Matthias Kamann

LÜBECK -- The parents want to maintain their anonymity. Not only because they want to be able to enjoy life with their new baby girl without media hassle, but also because they did something that outrages some people – embryo screening, as pre-implantation genetic diagnosis (PGD) is also called.

PGD entails taking a DNA sample from an embryo created in vitro from the mother's egg and the father's sperm, analyzing it for genetic abnormalities, and then – only if it is free of the abnormalities tested for – implanting the embryo in the mother's womb.

Initially illegal in Germany, PGD was pronounced legal by the German Supreme Court in 2010. The Bundestag, or federal parliament, passed a law the following year in favor of PGD practices.

The parents told Die Welt that it all began in 2008 when the wife became pregnant for the first time. An ultrasound scan of the embryo showed some deformities but the specialist they consulted couldn't, in his genetic testing, find any reason for them. After waiting for a bit to see if the anomalies disappeared, which they did not, the couple decided to interrupt the pregnancy in its 13th week. However, an examination of the fetus was not conducted. A second pregnancy in 2009 ended with a miscarriage. "That was the second time our world collapsed," the father says.

"I wouldn't have aborted..."

When the wife became pregnant for a third time, the couple once again faced an anxiety-ridden wait for tests. Their worst fears were confirmed: the same abnormalities appeared as had in the first pregnancy. This time, though, they waited.

"My hope was that if the child turned out to have some sort of challenge, it would be one that still made it possible for him or her to have a good life," the wife says. "I wouldn't have aborted a child with Down syndrome." It wasn't Down syndrome, though. It was a major deformity that doctors could not explain but that made an abortion -- in what was by now the 18th week -- advisable. "This time we wanted answers," the father says.

The aborted fetus was examined, and the parents given extensive tests. Results showed that the problem was the extremely rare Desbuquois syndrome. Although not affected themselves, both parents carried the genes. There was a 25% probability that any child of theirs would have heart, lung or skeletal problems so severe that it would die during the pregnancy or shortly after birth. "Once we realized that," the mother says, "we turned to the Kinderwunschzentrum in Lübeck" – a center for reproductive medicine at the University of Lübeck hospital.

"It was pure chance that the couple turned to us just then," says reproductive specialist Professor Georg Griesinger. "After intensive consultations and tests, researching exactly what medical technology could do in the case, and checking with our ethics commission, we came to the conclusion that PGD made sense."

The person in charge of the PGD procedures was Professor Gabriele Gillessen-Kaesbach, a human geneticist. "Before we could begin, we had to bone up on Desbuquois syndrome and develop the appropriate testing procedures," she says. "Each rare hereditary disease requires its own highly specialized procedure; it's presently impossible to test an embryo for a wide spectrum of potential problems." That's something that the current German law forbids anyway. PGD may only be used to test the specific hereditary disease prospective parents are hoping their child can avoid.

So it was only after a considerable preparatory phase that the process could begin. The mother found the artificial insemination trying – the hormones she was given prior to removal of egg cells caused edema, and she had to be hospitalized for a week.

In April 2011, six of the egg cells were successfully inseminated and PGD was carried out on five embryos. Two of the embryos turned out not to be affected by the syndrome; the couple's daughter was one of these. Three others carried the genes for Desbuquois syndrome but would not have themselves been affected by the syndrome; these were frozen, and are available to the mother for a future pregnancy if she so wishes.

Not expecting the "perfect" daughter

Before and during the whole process, the parents had long discussions with doctors and friends about what they were doing. All agreed that the point of the exercise was making sure that the child did not have the syndrome that would kill it before or shortly after birth. Their goal was not to have a "perfect" child. For that reason, says the husband, it's terrible having to contend with accusations about breeding humans as one might prize animals or killing off the handicapped.

"It wasn't about discrimination for us," he says. "Why should we not be able to have a baby out of fear that it would be afflicted?"

In Lübeck, the approach to PGD is low key. Dr. Griesinger says his team will be treating two more cases soon, but – even further down the road – can't imagine handling more than 20-25 such cases a year. Given the legal parameters set for the procedure, Griesinger estimates there will be 200-300 annual PDGs carried out nationwide in the coming years.

Many couples are turned away in Lübeck, either because chances are too small that they would pass on a hereditary illness, or the illness is not considered to be serious enough. "We wouldn't do a PGD if one of the parents had an illness that was not life-threatening," Dr. Gillessen-Kaesbach stresses, adding that a number of parents do not fit the bill for PGD because they are too old for artificial insemination.

Read the original story in German

Photo - mahalie

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What It Means When The Jews Of Germany No Longer Feel Safe

A neo-Nazi has been buried in the former grave of a Jewish musicologist Max Friedlaender – not an oversight, but a deliberate provocation. This is just one more example of antisemitism on the rise in Germany, and society's inability to respond.

At a protest against antisemitism in Berlin

Eva Marie Kogel


BERLIN — If you want to check the state of your society, there's a simple test: as the U.S. High Commissioner for Germany, John Jay McCloy, said in 1949, the touchstone for a democracy is the well-being of Jews. This litmus test is still relevant today. And it seems Germany would not pass.

Incidents are piling up. Most recently, groups of neo-Nazis from across the country traveled to a church near Berlin for the funeral of a well-known far-right figure. He was buried in the former grave of Jewish musicologist Max Friedlaender, a gravesite chosen deliberately by the right-wing extremists.

The incident at the cemetery

They intentionally chose a Jewish grave as an act of provocation, trying to gain maximum publicity for this act of desecration. And the cemetery authorities at the graveyard in Stahnsdorf fell for it. The church issued an immediate apology, calling it a "terrible mistake" and saying they "must immediately see whether and what we can undo."

There are so many incidents that get little to no media attention.

It's unfathomable that this burial was allowed to take place at all, but now the cemetery authorities need to make a decision quickly about how to put things right. Otherwise, the grave may well become a pilgrimage site for Holocaust deniers and antisemites.

The incident has garnered attention in the international press and it will live long in the memory. Like the case of singer-songwriter Gil Ofarim, who recently claimed he was subjected to antisemitic abuse at a hotel in Leipzig. Details of the crime are still being investigated. But there are so many other incidents that get little to no media attention.

Photo of the grave of Jewish musicologist Max Friedlaender

The grave of Jewish musicologist Max Friedlaender

Jens Kalaene/dpa/ZUMA

Crimes against Jews are rising

Across all parts of society, antisemitism is on the rise. Until a few years ago, Jewish life was seen as an accepted part of German society. Since the attack on the synagogue in Halle in 2019, the picture has changed: it was a bitter reminder that right-wing terror against Jewish people has a long, unbroken history in Germany.

Stories have abounded about the coronavirus crisis being a Jewish conspiracy; meanwhile, Muslim antisemitism is becoming louder and more forceful. The anti-Israel boycott movement BDS rears its head in every debate on antisemitism, just as left-wing or post-colonial thinking are part of every discussion.

Jewish life needs to be allowed to step out of the shadows.

Since 2015, the number of antisemitic crimes recorded has risen by about a third, to 2,350. But victims only report around 20% of cases. Some choose not to because they've had bad experiences with the police, others because they're afraid of the perpetrators, and still others because they just want to put it behind them. Victims clearly hold out little hope of useful reaction from the state – so crimes go unreported.

And the reality of Jewish life in Germany is a dark one. Sociologists say that Jewish children are living out their "identity under siege." What impact does it have on them when they can only go to nursery under police protection? Or when they hear Holocaust jokes at school?

Germany needs to take its antisemitism seriously

This shows that the country of commemorative services and "stumbling blocks" placed in sidewalks as a memorial to victims of the Nazis has lost its moral compass. To make it point true north again, antisemitism needs to be documented from the perspective of those affected, making it visible to the non-Jewish population. And Jewish life needs to be allowed to step out of the shadows.

That is the first thing. The second is that we need to talk about specifically German forms of antisemitism. For example, the fact that in no other EU country are Jewish people so often confronted about the Israeli government's policies (according to a survey, 41% of German Jews have experienced this, while the EU average is 28%). Projecting the old antisemitism onto the state of Israel offers people a more comfortable target for their arguments.

Our society needs to have more conversations about antisemitism. The test of German democracy, as McCloy called it, starts with taking these concerns seriously and talking about them. We need to have these conversations because it affects all of us. It's about saving our democracy. Before it's too late.

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