Ethical aspects of advanced neonatal screening for newborns

In 2023, a project on expanded neonatal screening of all newborns in the Russian Federation for 31 hereditary and congenital diseases was launched. Due to the increase in the number of participants in this project (parents, legal representatives, medical and other personnel), it is necessary to improve the bioethical aspects of their interaction. Objective. Assessment of bioethical aspects of extended neonatal screening. Patients and methods. A sociological study was conducted by questionnaire survey method among 1500 parents (mothers) of patients (0–1 years) examined within the framework of extended neonatal screening in the Republic of Bashkortostan. Results. The survey showed that the introduction of technological innovations, such as mass newborn screening, has many bioethical aspects to consider. The ethical acceptability of the use of molecular genetic research methods in the field of expanded neonatal screening is considered taking into account the position of parents, who may not always be ready to accept the fact of the presence of a particular disease in their child. It is emphasized that the purpose of expanded neonatal screening and medical and genetic services is not only to establish the diagnosis at the preclinical stage, but also to help parents and the child adapt to new conditions through recommendations that allow them to adapt to overcoming life difficulties caused by pathology and rehabilitation. Conclusion. The normative and declarative regulation of neonatal and extended neonatal risk does not allow for full information to be communicated to parents, which requires a change in approaches to informing the public about the importance of projects. The bioethical aspects of extended neonatal screening require constant improvement due to the fact that the primary psychosocial reaction of parents of all three groups manifested itself in the form of stress. To minimize anxiety, it is necessary to inform parents about the goals of the RNS, possible results, and algorithms for interacting with medical organizations, medical and social workers. Key words: neonatal screening, hereditary diseases, psychological support, extended neonatal screening, communication of diagnosis, ethical aspects of screening