Genetic Risks: The Implications of Embryo Screening


PID makes up about 0.2 percent of revenues at the Genetics Center. Holinski-Feder says that the price of PID covers her costs but doesn't bring in a profit. "I do this because I want others to be able to do it," she says.

Employees at the MGZ gather in Holinski-Feder's office for their morning meeting. There aren't enough chairs to go around, so some have to sit on the windowsill. They discuss the previous day's cases. Holinski-Feder leans back in her chair.

The discussion revolves around cancer, tumor markers and gene translocations. At the end, one employee pulls a printout of an email from his pocket and reads it out loud: "This is my request: Can you determine whether there is any relation to Wilhelm II?" Everyone laughs.

The genetics centers that will be allowed to perform pre-implantation genetic diagnosis in the future must satisfy strict criteria. They need a lot of experience in gene analysis and must have the necessary technical equipment. Holinski-Feder estimates that 10 to 20 centers in Germany will meet the requirements.

Under the law, couples are allowed to use the method if, due to the genetic makeup of the parents, there is a strong likelihood that the child will have a serious genetic defect or that the pregnancy will end in stillbirth or miscarriage. There will be no fixed list of disorders. Ethics commissions will be formed to issue approval on a case-by-case basis.

But what are the limits? How serious does a disease have to be for a couple to qualify for a PID?

"No one has a free ticket for 70 years of healthy life," says Holinski-Feder. She feels that the possibilities that exist in the United States go too far. "Making a little sibling be a donor for a child with leukemia, that's not okay," she says, adding that there are many other ways to help these children.

The Right to Decide

"But what if there are no treatment options?" she asks. "If there's nothing we can do?" Holinski-Feder is convinced that if parents know about the risk of a genetic disorder, they should have the right to decide whether or not to accept that risk.

The decisions these couples make often depends on their experiences, and on how much support they get.

Anna, the daughter of Sandra and Markus Kranz, lived only 84 days. The seizures began immediately after she was born last March. The doctors discovered that the child had cysts on her kidneys and a hole in her heart, and that her brain wasn't properly developed.

After 11 days, they knew why: Anna had Zellweger syndrome, a rare metabolic disease in which many enzymes don't work properly, and the organs gradually fail. According to the medical dictionary, "patients rarely survive infancy."

After 19 days in the hospital, doctors sent the Kranz family home. There was nothing else they could do for Anna. She had been born blind and deaf. "All she could do was feel us," says her mother. The parents made a bed for the child on the narrow red sofa in their living room. They positioned the oxygen machine and the monitoring device at the head of the sofa, placing the black box containing tubes and syringes under the coffee table.

Anna couldn't drink, so her parents fed her through a feeding tube. They were constantly lying on the sofa with their child, making sure that Anna remained on her side so that she wouldn't choke on her own tongue.

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