Fetuses with neural tube defects: Ethical approaches and the role of health care professionals in Turkish health care institutions

Abstract

Neural tube defects (NTDs) are very serious malformations for the fetus, causing either low life expectancy or a chance of survival only with costly and difficult surgical interventions. In western countries the average prevalence is 1/1000-2000 and in Turkey it is 4/1000. The aim of the study was to characterize ethical approaches at institutional level to the fetus with an NTD and the mother, and the role of health care professionals in four major centers in Turkey. The authors chose perinatology units of four university hospitals and prepared questionnaires for the responsible professionals concerning their own and their institution's ethical approaches to the fetus with an NTD and the mother. The investigation revealed that there were no institutional ethical frameworks or ethics committees available to professional teams in the units. The roles of the health care professionals and their individual decisions and approaches based on ethical principles are described. The ethical decision-making process concerning fetuses with NTDs, examples of institutional approaches to the topic and institutional frameworks, and the role of nurses and other health care professionals are all discussed, based on a literature review. The authors suggest that institutional ethical frameworks, ethics committees, professionals' ethics education and multidisciplinary teamwork should be established for critical situations such as fetuses with an NTD.