Genetic Risks: The Implications of Embryo Screening


In 2006, a Berlin doctor reported himself to the authorities. He wanted the country's highest judges to issue a ruling on PID. In 2010, the Federal Court of Justice declared the genetic test permissible in exceptional cases, and a year later the German parliament, the Bundestag, amended the country's Embryo Protection Act.

Last Friday the Bundesrat, the legislative body that represents the German states, approved a rule regulating how the procedure is to be used in practice. If it goes into effect, PID will be permitted in Germany. The German states will then have one year to implement the rule.

What is Normal?

It's been a long road to reach this point. In their conception of what life means and how much control humans should be allowed to exert over it, many critics think this kind of genetic screening is a step too far.

Medical ethicist Axel Bauer writes about his concerns in an article for an initiative called "Stop PID." He fears "that the possibilities PID offers will significantly reduce the range of 'normality' that will still be tolerated in our society in the future." Hubert Hüppe, the federal government's commissioner for the disabled, says critically: "In the future, human life will only exist after quality control."

Elke Holinski-Feder exhales deeply. Then she says: "I have a feeling that many of those who pass judgment on PID don't know what we are doing here."

When doctors, philosophers and politicians talk about PID, they are usually talking about the future. What happens when man begins to qualitatively assess the life he creates in a Petri dish? Is he toying with fate? Playing God? Is he helping? And where do his limits lie?

Holinski-Feder prefers to talk about the present. She is blonde and petite, and there are photos of her children in her office. When her students ask her: "When does human life begin?" she responds with a series of questions: "Imagine you were asked to place a picture of yourself as a child on the shelf. Which picture would you use? The zygote? The embryo? The baby?"

The staff at the MGZ includes five human geneticists and 14 biologists and chemists. The center's main activity lies in the diagnosis of neurogenetic diseases and hereditary forms of cancer. It receives about 30 blood samples a day, mostly from cancer and epilepsy patients. But parents who are carriers of a serious congenital disorder also contact the MGZ for help. Holinski-Feder often has to give them bad news. That is something she wants to see changed -- she wants to give good news, as well.

A Last Chance

One of the couples she would like to be giving good news to are Jürgen Schäfer, 41, and his wife Carola(*), 42, who are currently sitting in the consultation room.

They have traveled to Munich from a small town near Darmstadt in southwestern Germany. A file on the table in front of the Schäfers tells the couple's story, page by page.

They tried to conceive a child for three years. They went to a fertility clinic in the fourth year, and Carola Schäfer underwent an artificial insemination procedure twice. Then she became pregnant.

When her doctor performed an ultrasound in the 14th week of pregnancy, she discovered a kink in the child's spine. A sample of amniotic fluid was taken in the 18th week. By the 20th week, it was clear that the child had an unbalanced translocation on the second and 16th chromosomes. It had severe organic damage. The cerebellum wasn't growing, the heart was too large and the large intestine was missing.

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