Bioethical, medical, and social problems in children with growth hormone deficiency

Abstract

Background. Medical and practical advancements have brought about new possibilities for providing healthcare to people, but with it comes new bioethical challenges. In many pediatric medical institutions, consultations on pediatric ethics have become common practice. However, the bioethical problems related to short children have not been studied enough yet. The purpose of this study is to identify and analyze bioethical, medical, and social issues in children with growth hormone deficiency (GHD), which can potentially hinder timely diagnosis and adherence to replacement therapy. Materials and methods. The identification of bioethical, medical, and social problems was conducted at the Odesa Regional Children’s Hospital between 2012 and 2020. The study involved a cohort of 94 children with GHD and short stature (SDS 3.4 ± 0.1), aged 7.2 ± 0.4 years, as well as their parents (124 individuals). The study was based on a questionnaire survey, history taking, interviews, objective examination of patients, and analysis of medical records. Results. The study found evidence of violations of the Hippocratic principle of help and assistance (“do good”) in the form of delayed or incorrect diagnosis in 10.6 % of cases and incomplete adherence to local protocols for managing sick children in 6.4 % of cases. Violations of the Hippocratic principle of non-harm (“first, do no harm”) were evidenced by adverse events (16.0 %) and serious adverse events (3.2 %) during replacement therapy. Children with GHD were subject to violations of social justice, such as neglect (8.5 %), socio-economic problems in the family (12.8 %), and external environmental restrictions (9.6 %). Violations of the personal autonomy of children with GНD inclu­ded physical and psychological abuse in the family (29.8 and 38.3 % of cases, respectively), stigmatization (25.5 %), school bullying (27.2 %), medical neglect (5.3 %), medical paternalism (6.4 %), and overprotection (10.6 %). Conclusions. In the management of children with GHD, various bioethical, medical, and social issues have come to light. Low adherence to recombinant human growth hormone therapy can be considered an independent bioethical problem associated with medical paternalism and medical neglect.