Bioethical principles and applied bioethics in the field of neurodegenerative disease research in Yakutia
https://doi.org/10.25789/YMJ.2024.85.23
Abstract
Applied bioethics is a field of knowledge, the subject of which is practical moral problems. The ethical principles that form the basis for applied bioethical research related to neurodegenerative disease in Yakutia are discussed. Applying the basic four ethical principles as starting points can lead to different answers regarding specific bioethical problems, in our case the moral problems of providing medical care to patients with neurodegenerative diseases.
About the Author
S. K. KononovaRussian Federation
KONONOVA Sardana Kononovna – Ph.D. in Biology, chief researcher
References
1. Belyaletdinov R.R. Uvazhenie personal'noj avtonomii kak problema smyslopolaganiya v bioetike [Respect for personal autonomy as a problem of meaning-setting in bioethics]. Znanie. Ponimanie. Umenie [Knowledge. 2022; 4:160-172 (In Russ.).] DOI 10.17805/ zpu.2022.4.14.
2. Davydova T.K. [et al.]. Bioeticheskie problemy pri organizacii specializirovannoj medicinskoj pomoshchi pacientam s bolezn'yu dvigatel'nogo nevrona v RS(YA) [Bioethical problems in the organization of specialized medical care for patients with motor neuron disease in MS (Ya)]. Yakutskij medicinskij zhurnal (Yakut Medical Journal. 2022;4(80): 44-47 (In Russ.).] DOI 10.25789/ YMJ.2022.80.
3. Bravina R.I., Popov V.V. Pogrebal'no-pominal'naya obryadnost' yakutov: pamyatniki i tradicii (XV-XIX vv.) [Funeral and memorial rites of the Yakuts: monuments and traditions (XV-XIX centuries). Novosibirsk: Nauka, 2008: 926 (In Russ.).]
4. Vorontsova M.V. Bioetika i genetika: vyzovy XXI veka [Bioethics and genetics: challenges of the 21st century. Moscow, February 6, 2024 URL: https://bioethics.significo.ru Access mode: for registered users. URL: https://bioethics.significo. ru Rezhim dostupa: dlya zaregistrir.pol'zovatelej (In Russ.).]
5. Dulich L.M. Bioetika i biopravo: budet Li v Rossii zakon o bioetike? [Bioethics and bio law: Will there be a law on bioethics in Russia?]. Vestnik Sankt-Peterburgskoj yuridicheskoj academia [Bulletin of the St. Petersburg Law Academy. 2021; 3(52): 38-43 (In Russ.).]
6. Gusseinov A.A. Razmyshleniya o prikladnoj etike [Reflections on applied ethics]. Vedomosti nauchno-issledovatel'skogo Instituta prikladnoj etiki. Vyp. 25: Professional'naya etika [Bulletin of the Research Institute of Applied Ethics. Vol. 25: Professional ethics]. Tyumen: NIIPE, 2004:148159 (In Russ.).].
7. Kononova S.K. Vnedrenie geneticheskih tekhnologij v prakticheskoe zdravoohranenie YAkutii na primere spinocerebellyarnoj ataksii I tipa v kontekste translyacionnoj mediciny [[Introduction of genetic technologies into practical healthcare in Yakutia on the example of spinocerebellar ataxia type I in the context of translational medicine]. Yakutskij medicinskij zhurnal [Yakut Medical Journal. 2022; 3(79): 103-107 (In Russ.).] DOI 10.25789/YMJ.2022.79.26.
8. Kulik S.P. Sociokul'turnye predposylki stanovleniya bioetiki kak novogo tipa myshleniya [Sociocultural prerequisites for the formation of bioethics as a new type of thinking]. Dostizheniya fundamental'noj, klinicheskoj mediciny i farmacii : Materialy 71-oj nauchnoj sessii sotrudnikov universiteta [Achievements of fundamental, clinical medicine and pharmacy: Materials of the 71st scientific session of university staff. Vitebsk: Vitebsk State Medical University. 2016; 393-395 (In Russ.).]
9. Letov O.V. Aktual'nye problemy bioetiki [Actual problems of bioethics]. Social'nye i gumanitarnye nauki. Otechestvennaya i zarubezhnaya literatura. Seriya 3: Filosofiya. Referativnyj zhurnal [Social and human sciences. Domestic and foreign literature. Episode 3: Philosophy. Abstract journal. 2020; 4: 66-69 (In Russ.).]
10. Novikov A.G. O mentalitete saha. YAkutsk: Analit. centr pri Prezidente Resp. Saha [On the mentality of Sakha. Analytical Center under the President of the Republic Sakha. 1996; 147 (In Russ.).]
11. Ogurtsov A.P. Etika zhizni ili bioetika [Ethics of life or bioethics]. Voprosy filosofi [issues of philosophy. 1994; 3: 32 (In Russ.).]
12. Zholomanova A.H. [et al.]. Osnovnye metodologicheskie polozheniya i filosofskoe obosnovanie aktual'nosti elektiva «Bioetika» dlya medicinskih vuzov [The main methodological provisions and philosophical justification of the relevance of the elective "Bioethics" for medical universities]. Medicina i ekologiya [Medicine and Ecology.. 2022; 3(104): 68-73 (In Russ.).]
13. Davydova T.K. [et al.]. Opyt sozdaniya specializirovannogo centra medicinskoj pomoshchi dlya bol'nyh s nejrodegenerativnymi zabolevaniyami na baze kliniki nauchnogo uchrezhdeniya [[The experience of creating a specialized medical care center for patients with neurodegenerative diseases on the basis of a clinic of a scientific institution]. YAkutskij medicinskij zhurnal [Yakut Medical Journal. 2020; 4(72): 53-57 (In Russ.).] DOI 10.25789/YMJ.2020.72.14.
14. Platonov F.A., Kononova S. K., Gogolev M. P. Struktura i rasprostranennost' nasledstvennoj mozzhechkovoj ataksii v YAkutii [The structure and prevalence of hereditary cerebellar ataxia in Yakutia]. Nevrologicheskij zhurnal [Neurological Journal. 2003; 8(6): 12-14 (In Russ.).]
15. Prikaz Ministerstva zdravoohraneniya Rossijskoj Federacii, Ministerstva truda i social'noj zashchity Rossijskoj Federacii (Mintrud Rossii) ot 31 maya 2019 g. N 348n «Ob utverzhdenii perechnya medicinskihizdelij, prednaznachennyh dlyapodderzhaniya funkcij organov i sistem organizma cheloveka, predostavlyaemyh na domu» [The order of the Ministry of Health of the Russian Federation, the Ministry of Labour and Social Protection of the Russian Federation (Ministry of Labour of Russia) date May 31, 2019.N 348n “On approval of the list of medical devices designed to maintain the functions of organs and systems of the human body provided at home” (In Russ.).]
16. Prikaz Ministerstva zdravoohraneniya Rossijskoj Federacii, Ministerstva truda i social'noj zashchity Rossijskoj Federacii (Mintrud Rossii) ot 31 maya 2019 g. N 345n/372n "Ob utverzhdenii Polozheniya ob organizacii okazaniya palliativnoj medicinskoj pomoshchi, vklyuchaya poryadok vzaimodejstviya medicinskih organizacij, organizacij social'nogo obsluzhivaniya i obshchestvennyh ob"edinenij, inyh nekommercheskih organizacij, osushchestvlyayushchih svoyu deyatel'nost' v sfere ohrany zdorov'ya" [The order of the Ministry of Health of the Russian Federation, the Ministry of Labour and Social Protection of the Russian Federation (Ministry of Labour of Russia) dated May 31, 2019 N 345n / 372n "On approval of the Regulation on the organization of palliative care, including the interaction of medical organizations, social services and public associations, other non-profit organizations operating in the field of health" (In Russ.).]
17. Fedorov A.I. [et al.]. Rasprostranyonnost' spinocerebellyarnoj ataksii 1 tipa v YAkutii: sovremennoe sostoyanie [The prevalence of spinocerebellar ataxia type 1 in Yakutia: current state]. Medicinskaya genetika [Medical Genetics. 2020;7(216): 29-30 (In Russ.).] DOI 10.25557/2073-7998.2020.07.29-30.
18. Seroshevsky V.L. YAkuty (opyt etnograficheskogo issledovaniya) [Yakuts (experience of ethnographic research). M.: Assoc. Russ. polit. encycl. 1993; 174 (In Russ.).]
19. Tyrylgin M.A. Istoki fenomenal'noj zhiznesposobnosti naroda saha [The origins of the phenomenal vitality of the Sakha people. Yakutsk: Izd-vo Bichik.2000; 304 (In Russ.).]
20. Shamov I.A. Biomedicinskaya etika. Uchebnik dlya studentov medvuzov. [Biomedical ethics. Textbook for medical students. Maxachkala, 2005:405 (In Russ.).]
21. Yudin B.G. Principy bioetiki. Bioetika:principy, pravila, problem [The principle of bioethics. Bioethics: principles, rules, problems. M.: Editorial URSS. 1998; 5-22 (In Russ.).]
22. Baker R. Principles and Duties: A Critique of Common Morality Theory. Camb Q Healthc Ethics. 2022;31(2):199-211. doi: 10.1017/ S0963180121000608.
23. Beckwith F, Thornton AK. Moral Status and the Architects of Principlism. J Med Philos. 2020; 45(4-5):504-520. doi: 10.1093/jmp/jhaa019.
24. Benatar D. Bioethics and health and human rights: a critical view. J Med Ethics. 2006; 32(1):17-20. doi: 10.1136/jme.2005.011775.
25. Beauchamp TL and Childress JF. Principles of biomedical ethics, 4rd ed. New York: Oxford University Press. 1994; p.28
26. Birnbacher D. Ethics and social science: which kind of cooperation? Ethical Theory Moral Pract. 1999;2(4):319–36.
27. Bogaert B. The value of ethical principles to reflect on emerging issues in epilepsy care and research. Rev Neurol (Paris). 2023;179(4):345351. doi: 10.1016/j.neurol.2023.02.065.
28. Childress JF, Beauchamp TL. Common Morality Principles in Biomedical Ethics: Responses to Critics. Camb Q Healthc Ethics. 2022;31(2):164-176. doi: 10.1017/ S0963180121000566.
29. de Vries R, Gordijn B. Empirical ethics and its alleged meta-ethical fallacies. Bioethics. 2009;23(4):193–201.
30. Dheensa S, Fenwick A, Lucassen A. “Is this knowledge mine and nobody else’s? I don’t feel that.” Patient views about consent, confidentiality and information-sharing in genetic medicine. Journal of Medical Ethics, 2015; 42(3): 174–179. doi:10.1136/medethics-2015-102781
31. Gillon R. Medical ethics: four principles plus attention to scope. BMJ. 1994; 309(6948):184-8. doi: 10.1136/bmj.309.6948.184.
32. Gillon R. Defending the four principles approach as a good basis for good medical practice and therefore for good medical ethics. J Med Ethics.2015;41(1):111-6. doi: 10.1136/medethics-2014-102282.
33. Goldfarb LG, Vasconcelos O, Platonov FA [et al.] Unstable triplet repeat and phenotypic variability of spinocerebellar ataxia type 1. Ann Neurol. 1996;39(4):500-6. doi: 10.1002/ana.410390412.
34. Hodgson J, Spriggs M.A practical account of autonomy: Why genetic counseling is especially well suited to the facilitation of informed autonomous decision making. Journal of Genetic Counseling, 2005;14(2), 89–97.doi: 10.1007/ s10897-005-4067-x
35. Hulkower A.A Place of His Own: Applying Dignity of Risk to Bioethics Consultation. Perspect Biol Med. 2022;65(2):232-241. doi: 10.1353/pbm.2022.0019.
36. Jamal L, Schupmann W, Berkman BE. An ethical framework for genetic counseling in the genomic era. J Genet Couns. 2020;29(5):718727. doi: 10.1002/jgc4.1207.
37. John S. Non-Maleficence, Social Benefit and the Vaccination of Children. R I Med J (2013). 2022 ;105(3):9-12.
38. Meier LJ, Hein A, Diepold K, Buyx A. Algorithms for Ethical Decision-Making in the Clinic: A Proof of Concept. Am J Bioeth. 2022; 22(7):4-20. doi: 10.1080/15265161.2022.2040647.
39. Munyaradzi M. Critical reflections on the principle of beneficence in biomedicine. Pan Afr Med J. 2012;11:29.
40. Mukherjee D, Tarsney PS, Kirschner KL. If Not Now, Then When? Taking Disability Seriously in Bioethics. Hastings Cent Rep. 2022;52(3):3748. doi: 10.1002/hast.1385.
41. Parker M, Lucassen AM. Genetic information: A joint account? BMJ, 2004;329(7458), 165–167. doi10.1136/bmj.329.7458.165
42. Platonov FA, Tyryshkin K, Tikhonov DG [et al.] Genetic fitness and selection intensity in a population affected with high-incidence spinocerebellar ataxia type 1. Neurogenetics. 2016; 17(3):179-85. doi: 10.1007/s10048-016-0481-5.
43. Rincic I, Muzur A, Richie C. The eco-ethical contribution of Menico Torchio a forgotten pioneer of European Bioethics. Philos Ethics Humanit Med. 2023 ;18(1):20. doi: 10.1186/s13010023-00145-5.
44. Sutrop M. Viewpoint: how to avoid a dichotomy between autonomy and beneficence: from liberalism to communitarianism and beyond. J Intern Med. 2011; 269(4):375-9. doi: 10.1111/j.1365-2796.2011.02349_2.x.
45. Salloch S, Wäscher S, Vollmann J, Schildmann J. The normative background of empirical-ethical research: first steps towards a transparent and reasoned approach in the selection of an ethical theory. BMC Med Ethics. 2015;16:20. doi: 10.1186/s12910-015-0016-x.
46. ten Have HA. Potter's notion of bioethics. Kennedy Inst Ethics J. 2012; 22(1):59-82. doi: 10.1353/ken.2012.0003.
47. Veatch RM. Reconciling Lists of Principles in Bioethics. J Med Philos. 2020;45(4-5):540-559. doi: 10.1093/jmp/jhaa017.
Review
For citations:
Kononova S.K. Bioethical principles and applied bioethics in the field of neurodegenerative disease research in Yakutia. Yakut Medical Journal. 2024;(1):92-97. https://doi.org/10.25789/YMJ.2024.85.23