Against the background of current technological and legal developments, the Ethics Council describes the current practice and the new possibilities of genetic diagnosis of embryos. It goes into detail on the various positions and arguments on the status and protection of embryos and discusses the most important socio-ethical aspects.
Proceeding on the basis of these considerations, the Council members develop two alternative proposals for legislation on PGD.
A group of thirteen members of the German Ethics Council regard PGD, subject to particular restrictions, as ethically justified, because PGD opens a possibility of avoiding a lawful termination of pregnancy following prenatal diagnosis and on the basis of medical indication, and also offers an opportunity of assistance to couples who for genetic reasons have experienced repeated miscarriages or stillbirths. In both cases, good reasons relating to the protection of the woman's health support the permission of PGD.
The requirement for PGD to be carried out is a high degree of medical risk. This exists
a) if evidence is submitted that the parents have a hereditary disposition which if it were passed on to the child would result in a serious illness or disability and if it were established by prenatal diagnosis would constitute a medical indication for termination of pregnancy by reason of an endangerment of the physical or psychological health of the woman in question,
b) if evidence is submitted that the parents have a high degree of risk of passing on a chromosome disorder or other mutation which excludes extrauterine viability of the embryo or
c) if, after repeated miscarriages or unsuccessful attempts at treatment by assisted reproduction after thorough medical clarification, the parents have a high degree of risk of maturation disorders of the germ cells, with the result that a large proportion of the embryos created are not viable outside the womb.
On the other hand, in the opinion of these Council members, PGD is impermissible and must be prohibited by statute
a) to determine the sex of an embryo, unless this is done in order to prevent the birth of a child with a very serious, sex-linked congenital genetic anomaly,
b) if it is to be carried out with the objective of selecting an embryo to donate cells, tissues or organs for another person,
c) if, without any of the indications set out above, it is, for example, to be carried out to prevent a risk of chromosome disorders in the embryo which is assumed solely on the basis of the woman's age and
d) in the case of late-manifesting illnesses.
The supporters of a restricted permission of PGD recommend that the legislature should lay down these criteria but should not create a catalogue of individual illnesses or disabilities in the case of which PGD may be considered.
In addition, they suggest that there should be rules of procedure for conducting PGD, which should be uniform nationwide. The diagnosis is to be made jointly, following the determination of the genetic risk and counselling from a human geneticist, after medical advice from a specialist in reproductive medicine and after psychosocial advice by an advice centre recognised under the Conflicted Pregnancy Act (Schwangerschaftskonfliktgesetz), by the experts involved in the counselling and a representative of the IVF commission of the Landchamber of physicians.
In suggesting a restricted permission of PGD, the supporters of this concept intend to avoid a conflict of values with the existing statutory protective concept during pregnancy.
A group of eleven members of the Ethics Council is of the opinion that pre-implantation diagnosis is not ethically justified and should be prohibited
- because the embryo created in vitro, since it was artificially created, is subject to a particular duty of responsibility which forbids creating it in order to discard it in the case of undesired characteristics,
- because selective consideration of the embryos created by deliberate human acts and readiness to possibly discard them fundamentally distinguishes PGD from the situation of termination of pregnancy by reason of medical indication after prenatal diagnosis,
- because PGD would reintroduce an embryopathic indication, that is, the permission to discard human life by reason of undesired characteristics; this indication has expressly been removed from the law on conflicted pregnancy,
- because serious consequences can be foreseen for the protection of embryos, in particular in that a large number of "surplus" embryos would be created and nobody knows how these should be treated,
- because a restriction to a few groups of cases or serious illnesses cannot be adhered to; on the contrary, it can be anticipated that the indications and occasions for the use of PGD will be increased, as has already happened in other countries which have permitted PGD,
- because the technological development of chip-assisted diagnosis techniques makes it more probable that in the foreseeable future PGD will be used more broadly for simultaneous diagnosis of a large number of genetic deviations or dispositions to illness,
- because the pressure on parents carrying genetic risks who do not wish to undergo PGD, and on persons with disabilities, in particular with genetically caused disabilities, might increase and this would counteract efforts for integration and inclusion.
According to the signatories to this proposal, the anxieties and wishes of couples carrying genetic risks must be taken seriously. However, they do not justify the introduction of PGD. Instead, it must be ensured that there is better counselling and support for affected couples or families; it must also be examined whether their genetic problems can be alleviated by means of other procedures.
In a dissenting position statement, one Council member advocates permitting PGD to identify embryos that are capable of development and to prepare a binding list of indications for this purpose.
The Opinion may be accessed at http://www.ethikrat.org.