BIOETHICAL PROBLEMS OF ORPHAN DISEASES

УДК 614.253:616-056.7

Authors

  • Yu.Yu. Kochetova Altai State Medical University Email: kochetova20@mail.ru
  • E.V. Maslova Altai State Medical University Email: kochetova20@mail.ru

Keywords:

bioethics, orphan diseases, the principle of justice, mercy, medical experiment

Abstract

Orphan diseases today have a positive upward trend despite all the achievements of modern medicine. Any effective treatment methods for most of them are absent today. Along with objective obstacles to the study of the mechanism of orphan diseases, due to their characteristics, there are social and economic reasons that do not contribute to the victory of medical science over incurable diseases. This dictates the need to understand the ethical context of the status of patients with orphan diseases and research procedures related to the treatment of these pathologies. 

Downloads

Download data is not yet available.

References

  • Volgina S. Ya., Nikolaeva E. A., Sokolov A.A., Kopishinskaya S. V., Gamirova R. G., Halmatova B. T. Problemy detej s redkimi boleznyami: eticheskie, social'nye, psihologicheskie i medicinskie aspekty. Rossijskij vestnik perinatologii i pediatrii. 2019; 64:(5): 149-154. DOI: 10.21508/1027-4065-2019-64-5-149-1542)
  • Kolbin A. S., Gapeshin R. A., Malyshev S. M. Sovremennye problemy obespecheniya orfannymi lekarstvennymi sredstvami i puti ih resheniya // Voprosy sovremennoj pediatrii. 2016;15(4):344-351. https://doi.org/10.15690/vsp.v15i4.1584
  • Kacetl J, Marešová P, Maskuriy R, Selamat A. Ethical Questions Linked to Rare Diseases and Orphan Drugs - A Systematic Review. Risk Manag Healthc Policy. 2020 Oct 13;13:2125-2148. doi: 10.2147/RMHP.S260641 // PMID: 33116992; PMCID: PMC7568613.
  • McCormack P, Woods S, Aartsma-Rus A, et al. Guidance in social and ethical issues related to clinical, diagnostic care and novel therapies for hereditary neuromuscular rare diseases: «translating» the translational // PLoS Curr. 2013;5. doi: 10.1371/currents.md.f90b49429fa814bd26c5b22b13d773ec

    • Downloads

    Published

    2023-12-28

    How to Cite

    Kochetova Y., Maslova E. . BIOETHICAL PROBLEMS OF ORPHAN DISEASES: УДК 614.253:616-056.7 // Intercultural Communication In Education and Medicine, 2023, № 4. P. 18–22. URL: https://icjournal.ru/icjournal/article/view/651.

    Issue

    No. 4 (2023): Intercultural Communication in Education and Medicine

    Section

    COMMUNICATION PROCESSES IN MEDICINE