"It's not about designer babies"
All content is checked by medical journalists.Can you examine embryos for serious hereditary diseases before using them in a woman? spoke to Prof. Christiane Woopen from the German Ethics Council about pre-implantation diagnostics (PGD).
Prof. Dr. med. Christiane Woopen
Prof. Dr. med. Christiane Woopen works at the Institute for the History and Ethics of Medicine, Research Center Ethics. She is a member of the German Ethics Council.
Prof. Woopen, isn't it a paradox that you shouldn't discard a seriously ill embryo even though you can later abort the inserted fetus?
I think that ethically you shouldn't make a difference here. The medical indication already enables women to have a legal abortion if the child is so seriously ill that the situation would be too stressful for the mother. Pre-implantation diagnosis (PGD) should also be possible with the same argument.
Opponents of PGD often argue that there could also be designer babies at some point - genetically ideal children, so to speak.
PGD is not about designing a baby with features that you find chic, it is about avoiding serious illnesses. A selection of certain properties such as intelligence would not be possible anyway. As a rule, a large number of genes play together here. From a purely technical point of view, a child cannot simply be designed that way.
The term designer babies also significantly distorts the debate. The families affected often already have a seriously ill child, i.e. have already had experience with this disease, and are considerably stressed. So it is inappropriate to speak of designer babies.
There are risk genes for heart attack, diabetes, or cancer. This could mean that PGD could also target major widespread diseases.
Many genes are responsible for such diseases, not just one. As a rule, these diseases only break out when certain unfavorable behaviors are added. In this respect, diseases that are caused by many factors cannot be recorded or prevented within the framework of PGD anyway.
Some advocate PGD, but only to a limited extent. It should only be used if there is a risk of death or miscarriage or if the child would die within the first year of life.
A law with such a restriction would exclude most of the couples hoping for PGD. For example, illnesses that break out immediately after birth, that place a heavy burden on the family and where the child does not die within the first year of life were not taken into account. Severe metabolic diseases are an example of this. If such couples are denied PGD, in case of doubt they may decide against having a child at all.
Others want to enable PGD for diseases that only break out in adulthood, such as Huntington's disease.
However, PGD would go further than prenatal diagnostics, in which testing for such diseases is excluded by the Genetic Diagnostics Act.
The prenatal diagnosis is the basis for a medical indication for abortion. But that serves to protect the mother or the couple. This is not about protecting the child from illness. A child may not be aborted because it has trisomy 21, but because it would pose a physical or mental health hazard to the woman.
If the child's disease breaks out late - as is the case with Huntigton's chorea - it is very difficult to justify that the mother would be so stressed that an abortion is justified.
What is your personal attitude towards this?
In my opinion, PGD should be based on a justification that looks at the individual situation of women in analogy to prenatal diagnostics. I can of course understand the fear of parents-to-be of having a child with a serious hereditary disease, even if it breaks out late. But most of us will eventually suffer from a more or less serious illness.
As soon as it is known which illness is in the room, this naturally appears particularly threatening. On the other hand, we don't know whether this particular disease might not be treatable in a few decades.
If we allow PGD in cases that go beyond the medical indication for abortion, we will increasingly find ourselves in a mentality where parents should take responsibility for the genetic makeup of their children. This goes too far.
Because then even more parents than today will have to reckon with a lack of understanding when they decide to have a child with a serious illness?
That is one of the important aspects. This pressure would be exacerbated by an extended approval of PGD. For example, if you still have a child with the Huntigton chorea, you may have to justify yourself. In addition, it would change the attitude of parents towards their children: Children are then no longer a gift, no longer unique and unavailable individuals, but in extreme cases objects that serve the interests of the parents.
What do you think of a catalog that defines the diseases for which PGD is possible?
I think such a catalog is the wrong way to go. It would actually start with the illness in general and not with the individual situation.
Instead, comprehensive counseling should take place before PGD - human genetic, reproductive medicine and psychosocial. In this context, the couple can reflect on the consequences of PGD. On the one hand, the parents must be informed about what it means to undergo the stressful process of artificial insemination - especially since it is only successful to a certain percentage. It is also important to find out whether carrying such a child would actually overwhelm the couple. If an indication is actually given, the decision for or against PGD rests with the couple alone.
What do you think the new PGD law will ultimately look like?
The way I perceive the debate today compared to the 1990s, there is now a greater openness to the situation of couples who carry a medical risk that could affect their child. I can therefore imagine that there will be limited admission.
Prof. Woopen, thank you very much for talking to us.
The interview was conducted by Christiane Fux
