How much should we know?
Opportunities and risks of predictive medicine
Joint statement of the German Bishops' Conference and the Council of the Evangelical Church in Germany
on the occasion of Pro-life Week, Joint Texts No. 11, 1997
" Every child deserves love. Accepting life instead of selecting it."
How much should we know?
Opportunities and risks of predictive medicine
Annex: On pre-implantation genetic diagnosis
In the context of the topic described here, pre-implantation genetic diagnosis represents a new technique which is controversially debated from a medical, legal and ethical point of view. Pre-implantation genetic diagnosis links the examination of the genetic material to in vitro fertilization. In pre-implantation diagnosis, some cells from the embryo that was made in a test tube are taken for a genetic examination before the embryo is implanted into the uterus (the so-called embryo transfer). If these cells are able to generate a complete individual by themselves (so-called totipotential cells), such type of diagnosis is not permitted. Another problem is what to do with embryos in which a defect has been detected. If they were destroyed, this would be unethical and, according to the Federal Embryo Protection Act, this would mean "improper use": life created by artificial fertilization must not be destroyed. The Embryo Protection Act assumes that life before birth is inalienable even in its early stages, and therefore it prohibits without exemption the use of an artificially created embryo for purposes other than its maintenance and survival. However, the legal situation is challenged by the following scenario: If an embryo diagnosed as being not completely healthy was implanted into a womb, under certain circumstances (the so-called medical indication) the embryo could legally be aborted.
Only if the cells to be examined in a pre-implantation diagnosis are no longer totipotential (i. e. in a stage where there are more than eight cells), they would no longer be considered embryos as defined by law, and, therefore, they would no longer enjoy the protection of the Embryo Protection Act. But even then there is the problem of indication requirements for an in vitro fertilization, without which pre-implantation diagnosis is not possible. According to the guidelines of the Federal Medical Board, in vitro fertilizations are allowed for sterile patients only. Pre-implantation diagnosis done on non-totipotential cells would therefore become applicable only if the indication for an in vitro fertilization was given on the grounds of sterility. Up to now, this has not yet happened, because it is still unclear whether an embryo with a detected disorder can be destroyed. In Germany, this is a conflict that has not been solved either on ethical or on legal grounds. In contrast, in the US and in other European countries (England, Italy, Spain and Belgium) the possibilities of pre-implantation diagnosis are made use of and are not considered illegal.
An argument used in favor of pre-implantation diagnosis is that it gives parents an opportunity to recognize early on whether the risks they feared have actually materialized. A diagnosis before pregnancy sets in is considered to be less burdensome. This way, a later abortion could be avoided by not completing the embryo transfer. Taking into consideration the woman who will be affected by this, from a medical and psychological perspective this argument undoubtedly is a serious and important one.
The following arguments speak against pre-implantation diagnosis:
- In Germany, any pre-implantation genetic diagnosis of totipotential cells would mean an infringement of the Federal Embryo Protection Act that is based on the conviction that human dignity and the right to live are bestowed on a human embryo from the moment of its fecundation. Consequently, it has to be protected against being exploited and destroyed even in its earliest stage of development.
- If more embryos than needed for the embryo transfer are created, the question at stake is what to do with the surplus embryos found to be healthy. Is it possible to destroy the embryos found to be not healthy? Nobody can force a woman to have a damaged embryo implanted. However, there is no scenario in which cells, possibly totipotential cells, that have been separated for examination will be maintained.
- One cannot completely rule out the possible damage of a "residual embryo" caused by the separation and the preservation processes necessary during the examination. Furthermore, it is possible that the diagnosis will find no genetically conditioned disease, however the procedural damage to the residual embryo might be too grave, so that in the end it might not be fit for transplantation.
- The creation of embryos with the aim of sorting out embryos with a genetic defect requires the ability to discriminate between worthy and unworthy life.
- In pre-implantation diagnosis the embryo is physically detached from its parents, particularly its mother, and is placed on the counter in a laboratory, at the mercy of a third party, which opens up new possibilities for manipulation. Such a diagnosis clearly contradicts the teachings of the Roman Catholic Church, which on principle rejects in vitro fertilization. The Protestant Church, too, advises against in vitro fertilization, which means that here, too, there are substantial reservations against pre-implantation diagnosis.
- Pre-implantation diagnosis is not taken into account in the new abortion law in which the legislator intentionally did not mention an embryopathic indication and only speaks of the medical indication with a view to the well-being of the pregnant woman. For according to the legislator's will it is not the hereditary disease of the child that is to be used as a justification for an abortion, but exclusively the idea that having a child with a congenital defect is asking too much of the pregnant woman.
Often, pre-implantation diagnosis is regarded as prenatal diagnosis brought forward and is assessed accordingly in its ethical dimension. One has to point out, however, that in comparison to prenatal diagnosis, from an ethical point of view pre-implantation diagnosis is of a different quality regarding the subsequent options. Prenatal diagnosis is not exclusively carried out with the objective of aborting embryos with a hereditary disease, but it is also motivated by the desire to sustain life. However, the selective approach already taken in prenatal diagnosis is just as questionable and of highly disturbing ethical implications. The problem is further intensified in pre-implantation genetic diagnosis exclusively geared towards the selection of human life. In doing so, embryos are deliberately created for the purpose of selecting the fittest ones among them.
In vitro fertilization was developed to help couples without children to have a baby. In conjunction with genetic research it can now fulfill the parents' wish for a specific child. Finally, ever new possibilities for diagnoses stimulate the desire to gain certainty about one's own health and that of one's children. It is not foreseeable whether in the future each in vitro fertilization will be accompanied by a full range of tests, as the laboratory is involved in the whole process of conceiving a child anyhow. It could become a matter of not only ruling out serious genetic diseases, but also all sorts of deviations. Does that mean the looming of a new type of eugenics according to which only people that fit certain ideals are entitled to be brought into the world?
In consequence, at present pre-implantation genetic diagnosis appears to create more problems than it solves. In view of the unborn human life, the limits of research require fundamental ethical reflection. With a view to the Federal Embryo Protection Act it seems necessary to find a statutory regulation for this area.