German debate about PGD

A recent article from Spiegel Online which is on the ABC News website discusses the debate about pre-implantation genetic diagnosis in Germany. Pre-implantation genetic diagnosis (commonly abbreviated PGD, but abbreviated PID in the article) is a technique in which one or a few cells are removed from a developing embryo produced by IVF and tested for genetic abnormalities. In the context of the discussion in Germany it is being used to allow parents who are known to be carriers of a serious genetic disorder to choose to give birth to a child without that disorder by choosing an embryo to implant who does not have the disorder from among the ones produced. Unlike the US, Germany carefully regulates reproductive technology and until 2010 PGD was illegal. A court ruling in 2010 led to a parliamentary amendment to Germany’s Embryo Protection Act to allow PGD to be used legally in exceptional cases in which parents are at high risk to have a child with a serious genetic disorder that can be detected by PGD.

Not everyone in Germany thinks this is a good idea. The arguments against PGD reported in the article come from medical ethicist Axel Bauer who wrote that 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 German government’s commissioner for the disabled, says critically: “In the future, human life will only exist after quality control.”

Elke Holinski-Feder founder of the Medical Genetics Center in Munich that provides the genetic services for PGD says “I have a feeling that many of those who pass judgment on PID don’t know what we are doing here.” She says that those who oppose PGD are concerned about what it might lead to in the future, but she is concerned about parents who want to have a child but know through the experience of having a child who has died from or is living a very difficult life with a serious genetic disorder. She wants to be able to offer them the ability to have another child who is free of that disorder. Her argument is essentially that as long as PGD is limited to allowing those parents who are at high risk to have a child with a serious disorder to have a child without that disorder it should be allowed. That limitation removes the fear of reducing the range of acceptable normality in society since those detectable genetic disorders are only a small fraction of congenital abnormalities and would not allow the use of PGD as quality control. She says that going beyond that limited use, as is done in the US, would be wrong, saying “making a little sibling to be a donor for a child with leukemia, that’s not okay.” She adds that there are other ways to help those children.

What seems to be missing in this discussion is concern about the value of the life of the embryos that are discarded in the process of PGD when they are found to have a genetic abnormality. In her comments in the article Holinski-Feder does express concern about using prenatal diagnosis and abortion as a method for screening for the same genetic disorders. She says “Do you know what advice these families are usually given? Try it, and if it goes wrong, terminate the pregnancy!” She explains that is not the advice she wants to give her patients and sees PGD as a better solution. The only reference to the value of human embryos in the article is when Holinski-Feder says that 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?”

While concerns about the morally problematic things to which PGD opens the door are legitimate concerns, the most significant ethical concern about the use of PGD is the embryos that are discarded. For those who believe that human embryos have full moral status, destroying them for any reason is wrong. Even for those who do not think that human embryos have full moral status, a human embryo is a living human organism whose unique identity is continuous with the human person that the embryo will be after gestation and birth. To discard an embryo is to say that the life of that unique human being has no value or that his or her life is not worth living. That is something that the German people should be especially sensitive to avoiding since it was the concept of a life not worth living as expressed by German philosophers in the early 20th century that was the foundation for the elimination of mentally disabled children early in the Nazi regime and the springboard for more extensive atrocities.

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