Malformações congênitas: reflexões médicas, jurídicas e bioéticas em busca da autonomia na gestação e na abordagem neonatal

Abstract

The diagnostic certainty of congenital malformations, made possible by technological advances in fetal propaedeutics, enables the exercise of reproductive autonomy by the pregnant woman, although it results in ethical and legal dilemmas that are difficult to solve, such as the option for abortion, and the decision-making regarding newborns with meager survival possibility. Starting with the Brazilian Supreme Court’s decision authorizing early therapeutic delivery in cases of anencephaly, which was mainly based on the incompatibility of this fetal anomaly with extrauterine life, we went on to interrogate the possibility of extending this understanding to other congenital malformations. Therefore, it became essential to analyze not only the types of intrauterine diagnosis of the main fetal malformations that are severe and incurable, but also the obstetrical approach to the woman who is pregnant with a malformed fetus, as well as the question regarding whether it is really possible to objectively define how lethal a fetal anomaly is. Finally, we performed a transdisciplinary analysis of the malformed newborn from the medical, judicial, and bioethical standpoints, also under the focus of the rights enjoyed by handicapped persons, and the right to dignified death. Furthermore, we studied the possibility of inserting, in Brazilian law, compensation lawsuits related to diagnosis and genetic counseling, like the lawsuits seen in foreign law for "wrongful conception," "wrongful birth," and "wrongful life." The topic is current and relevant, given that it involves aspects related to the principles of autonomy and dignity, which are the bases for fully recognizing individual rights that in the future might be constitutionally ensured.