Corine Mouton Dorey has published the paper “Ethical Considerations Concerning the Inclusion of Women with Epilepsy in Pregnancy Registries” in Epileptologie, the professional journal of the Swiss League against Epilepsy. This article was part of a global review on ethics and epilepsy under the leadership of Oswald Hasselmann.
Pregnancy registries are essential sources to gain medical and therapeutic knowledge in women with epilepsy who are pregnant or have the desire to give birth. The benefit of treatment for the mother has to be balanced with the prenatal and postnatal risk for the child. To gain reasonable medical evidence, pregnancy registries have to include an adequate and representative number of pregnant women with epilepsy. They will have to observe women during pregnancy and delivery, as well as the foetus respectively the child during its development. In addition, different health care providers have to coordinate their efforts, sharing data while preserving the mother privacy interests. Given these requirements, the multitude of antiepileptic drugs, and the poor knowledge concerning the important implications of the adopted therapy by potential mothers with epilepsy, the rate of patient inclusion in pregnancy registries is still insufficient to provide reliable recommendations for an appropriate medical management. An ethical approach as outlined here aims to overcome some of these obstacles.