Decolonial Critical Bioethics and Access to Treatment for Hemophilia in the Americas
Abstract
Over the past two decades, the integration of sociology with the analytical and normative practices of bioethics has become firmly established. This integration has given rise to two similar yet distinct conceptions of bioethics: empirical bioethics, which utilizes social sciences to enhance ethical scrutiny, and critical bioethics, which not only employs research methods but also draws from established social theories. Critical bioethics aims to overcome the decontextualized analyses inherent in the concept of applied ethics, which relies solely on moral philosophy. This epistemic deepening enables a comprehensible evaluation of the impacts of biotechnologies’ production and distribution within their social and global contexts, ultimately leading to more robust normative frameworks. This article presents the conceptual framework of a model of critical bioethics that we term “decolonial”, developed through the synthesis of the Frankfurt School and decolonial studies. To illustrate the relevance of its analytical parameters, we will examine to clotting factor concentrates in countries across the Americas.
Downloads
References
Parker LS. Breast Cancer Genetic Screening And Critical Bioethics' Gaze. J M Philos. 1995;20 (3):313-337. https://pubmed.ncbi.nlm.nih.gov/7658176/
Muller JH. Anthropology, Bioethics, And Medicine: A Provocative Trilogy. Med Anthropol Q. 1994;8(4):448-467. https://anthrosource.onlinelibrary.wiley.com/doi/10.1525/maq.1994.8.4.02a00070
Lopez J. How Sociology Can Save Bioethics... Maybe. Sociol Health Illn. 2004;26(7):875-896. https://onlinelibrary.wiley.com/doi/10.1111/j.0141-9889.2004.00421.x
De Vries RG, Scott YH,Kim.Bioethics And The Sociology Of Trust: Introduction To The Theme Med Health Care Philos.2008;11(4):377-379.https://www.researchgate.net/publication/51404413_Bioethics_and_the_sociology_of_trust_Introduction_to_the_theme
Davies R, Ives J, Dunn M. A Systematic Review Of Empirical Bioethics Methodologies. BMC Medical Ethics. 2015;16(1). https://pubmed.ncbi.nlm.nih.gov/25885575/
Hedgecoe AM. Critical Bioethics: Beyond The Social Science Critique Of Applied Ethics. Bioethics. 2004;18(2):120-143. https://pubmed.ncbi.nlm.nih.gov/15146853/
Twine R. Thinking Across Species A Critical Bioethics Approach To Enhancement. Theor Med Bioeth.2007;28(6):509-23. https://pubmed.ncbi.nlm.nih.gov/18320349/
Árnason V. Toward Critical Bioethics. Camb Q Healthc Ethics. 2015;24(2):154-164. https://pubmed.ncbi.nlm.nih.gov/25719351/
Cunha T, Lorenzo C. Global bioethics from the perspective of critical bioethics. Rev. bioet. 2014;22(1):116-125.
Quijano A. Coloniality And Modernity/Rationality. Cult. Stud. 2007;21(2-3): 168-178. https://www.tandfonline.com/doi/full/10.1080/09502380601164353
Grosfoguel R. Colonial Difference, Geopolitics of Knowledge and Global Coloniality in the Modern/Colonial Capitalist World-System. JSTOR. 2002;25(3):203-24.
Mignolo W. Geopolitics of sensing and knowing: on (de)coloniality, border thinking and epistemic disobedience. Postcolonial Stud. 2011;(14):273-283.
World Federation of Hemophilia. Report on the Annual Global Survey 2018 is published by the World Federation of Hemophilia [internet]. Available from: https://www1.wfh.org/publication/files/pdf1690.pdf [access, mars, 2020].
Vandenberg HM, Feldman BM, Fischer K, Blanchette V, Poonnoose P, Srisvastava A. Assessments of outcome in haemophilia – what is the added value of QoL tools? Haem. 2015; 21: 430–435.
Langstrup H. Chronic care infrastructures and the home. Sociol Health Illn. 2013;35(7):1008-22.
Thorat T, Neumann PJ, Chambers JD.Hemophilia Burden of Disease: A Systematic Review of the Cost-Utility Literature for Hemophilia. J Manag Care Spec Pharm. 2018;24(7):632-642.
De Vries RG. Bioethics And Society. Upper Saddle River N.J.: Prentice Hall;1998.
Potter VR. Bioethics: Bridge to the future. Englewood Cliffs: Prentice Hall;1971.
Rawlinson M. The Concept of a Feminist Bioethics. J Med Philos. 2001;26(4):405–416.
Garrafa V, Lorenzo C. Moral Imperialism And Multi-Centric Clinical Trials In Peripheral Countries. Cad Saude Publica. 2008;24(10):2219-2226. https://www.scielo.br/j/csp/a/Y3WzQznSXD54HKx6ckFLRDj/?format=pdf&lang=en
Habermas J. On the pragmatic, the ethical and the moral employments of practical reason. In Cronin C. Justification and Application. 1ed. Cambridge: Polity Press; 1993. 230.
Garrafa V, Cunha TR, Manchola C. Access To Healthcare: A Central Question Within Brazilian Bioethics. Camb Q Healthc Ethics. 2018;27(3):431-439. https://pubmed.ncbi.nlm.nih.gov/29845914/
Cunha T, Garrafa V. Vulnerability. Camb Q Healthc Ethics. 2016;25(2):197-208.
Lorenzo C. Teoria crítica e bioética: um exercício de fundamentação. In: Porto D, Garrafa V, Martins GZ, Barbosa SN. Bioéticas, Poderes e Injustiças: 10 anos depois. Brasília: CFM/Cátedra Unesco de Bioética/SBB; 2012. 171-188.
Santana SS, Lorenzo C. “South-South cooperation in health, by international organizations, under the perspective of critical bioethics”. Saúde debate. 2016;40(16):175-186.
Andraos C, Lorenzo C. Supplementary health system and home care of the elderly in the perspective of critical bioethics. Rev. bioét. 2013;21(3):525-35.
Horkheimer, M. Critical Theory: Selected essays. New York: Seabury Press: 359; 1982.
Marcuse, H. One-dimensional Man: Studies in Ideology of Advanced Industrial Society. New York: Routledge;1991
Cox R. Production, Power, and World Order: Social Forces in the Making of History. 1ed. New York: Columbia University Press, 1987.
Habermas, J. Theory of Communicative Action. Volume One: Reason and Rationalization of Society. Boston, Mass: Beacon Press; 1981.
McCartney G, Dickie E, Escobar O, Collins C. Health inequalities, fundamental causes and power: towards the practice of good theory. Sociol Health Illn. 2021 43 (1):20-39.
Witkop M, Guelcher C, Forsyth A, Hawk S, Curtis R, Kelley L, Frick N, Rice M, Rosu G, Cooper, D. Treatment outcomes, quality of life, and impact of hemophilia on young adults (aged 18–30 years) with hemophilia. Am J Hematol. 2015;90(S2):S3-S10.
Ferreira AA, Leite ICG, Bustamante MT, Guerra MR. Hemophilia A in Brazil – epidemiology and treatment developments. J Blood Med. 2014;5:175–184.
Boadas A, Ozelo MC, Solano M, Berges A, Ruiz-Saez A, Linares A, Lamas JL, Aparicio R, Aversa L, Baques A, Estrada A, Herrejon M, Mancia A, Nieves-Paulino R, Pinto I, Prezoti A, Soto V, Ugalde D. Haemophilia care in Latin America: assessment and perspectives. Haemophilia 2018;24(6):e395-e401 doi: https://doi.org/10.1111/hae.13607
Ministério da Saúde/SAES, Coordenação-Geral de Sangue e Hemoderivados: Hemovida Web Coagulopatias. Disponível em: https://www.gov.br/saude/pt-br/composicao/saes/sangue/publicacoes/coagulopatias/dados-coagulopatias-2020.pdf. Acesso em: 24/05/24.
Lieuw K. Many factor VIII products available in the treatment of hemophilia A: an embarrassment of riches?. J Blood Med. 2017;8:67–73.
Collin, J. On social plasticity: the transformative power of pharmaceuticals on health, nature and identity. Sociol Health Illn. 2016; 38(1):73-89.
Scambler, G. Health inequalities. Sociol Health Illn. 2012;34(1):130-46.
Angulo-Bazán Y, Delgado DF. Desafíos bioéticos en el contexto de la pandemia por el covid-19 en Latinoamérica. Carta al editor. 2020;20(1):11-13. doi: https://doi.org/10.18359/rlbi.4786
Garrafa V, Solbakk J, Vidal S, Lorenzo C. Between the needy and the greedy: The quest for a just and fair ethics of clinical research. J Med Ethics. 2010;36(8):500-4.
Diaz FAG. New Analisys Categories Of Global Bioethics. Rev.latinoameri.bioet. 2021;21(2):7-10. https://doi.org/10.18359/rlbi.5913
Copyright (c) 2024 Revista Latinoamericana de Bioética
This work is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
