ISSN Print 2713-0894    ISSN Online 2713-0908
BIOMEDICAL JOURNAL OF ERMC EASTERN EUROPEAN

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This study is relevant due to the need to balance child protection and respect for the family, while mitigating the risks of stigmatization and confidentiality breaches during cooperation between agencies. This study aims to identify the ethical dilemmas that arise while supporting children at risk of social orphanhood and to provide recommendations for improving these support tendencies. The research methods include analyzing regional practices, algorithms of interaction between agencies, the work of specialized commissions and councils, and the legal and regulatory framework, which includes the Convention on the Rights of the Child and Russian social service standards. According to the results, the most ethical and effective methods rely on minimal intervention, family partnership, and transparent communication. Collaborative visits by specialists and parents, interdisciplinary consultations, and adapted methodologies for considering the child’s views are effective. Researchers used data from the Yaroslavl region to find the major ethical issues such as treating informed consent as a mere formality, risk of data leakage in central databases, ignoring the life experience of families, and treating a child’s opinion without deep care.
VIEWS 64

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This review examines the ethical and legal implications of creating pharmacogenetic passports during the preconception (prior to conception) and prenatal (intrauterine) periods. The work is based on a methodological differentiation between the stages of genetic testing.. Preconception screening aims to assess carrier status in prospective parents and ensure their reproductive freedom, while prenatal testing provides fetus-related data, raising bioethical issues regarding the protection of interests and self-determination of the future child. The technologies of non-invasive prenatal testing (NIPT), preimplantation genetic testing (PGT), and prospects for intrauterine pharmacotherapy in severe congenital abnormalities are discussed. Special attention is given to ethical conflicts such as a conflict between the right to health and the right not to know, limits of parental proxy, and risk of genetic stigmatization. Normative approaches are suggested to address the identified ethical tensions (minimum intervention, clinical benefit, and deferred choice). The analysis of the Russian legislation and international instruments (Oviedo Convention, the GINA Act, the GDPR) yields recommendations for the healthcare system and legal regulation.
VIEWS 587