Enfermedades huerfanas, el estado colombiano y las instituciones privadas de salud
Orphan Diseases (E.H.) have been present in the genetic makeup of thousands of human beings worldwide and nationally, affecting not only the proper physical, social and cognitive development of those who suffer from them; but also, preventing the full enjoyment of a happy and healthy life, which, as...
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2022
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| Source: | Jurídicas CUC, ISSN 1692-3030, Vol. 18, Nº. 1, 2022 (Ejemplar dedicado a: Jurídicas CUC 2022; 217–240), pags. 477-496 |
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dialnet-ar-18-ART00015423292022-08-26Enfermedades huerfanas, el estado colombiano y las instituciones privadas de saludAraque Barboza, Francis YramaBeltrán De la Rosa, ElisamaMozo, Ana LilianaJulio Cajar, Julieth CarolinaDerechos Humanosderecho a la saludenfermedades huérfanasnormatividad jurídicaEstadoHuman Rightsright to healthorphan diseaseslegal regulationsStateOrphan Diseases (E.H.) have been present in the genetic makeup of thousands of human beings worldwide and nationally, affecting not only the proper physical, social and cognitive development of those who suffer from them; but also, preventing the full enjoyment of a happy and healthy life, which, as persons, has been established as a universal right. Such damage, in addition, being linked to the scarce medical investigation of the same, has as a starting point, the meager legal regulations. Under this context, this article arises, with the objective of making visible the legal-social reality of patients with orphan diseases in Colombia. The approach is hermeneutical-interpretive with a documentary-bibliographical method reaching the point of theoretical saturation. A critical reflection on Law 1392 of 2010 was carried out, analyzing its congruence or not, with the experience of the affected people within the health system. Finally, it is concluded that individuals with orphan diseases see their right to health violatedLas Enfermedades Huérfanas-EH, han estado presente en la composición genética de miles de seres humanos a nivel mundial y nacional, afectando no solo, el adecuado desarrollo físico, social y cognitivo de quienes las padecen; sino también, impidiendo el goce pleno de una vida feliz y saludable, que, en tanto personas, se ha dispuesto como derecho universal. Tal perjuicio, además, de hallarse vinculado a la escasa investigación médica de las mismas, tiene como punto de partida, la exigua normatividad jurídica. Bajo dicho contexto, este artículo surge, con el objetivo de, visibilizar la realidad jurídico-social de los pacientes con enfermedades huérfanas en Colombia. El enfoque es hermenéutico-interpretativo con un método documental-bibliográfico llegando al punto de saturación teórica. Se realizó una reflexión crítica sobre la Ley 1392 del 2010 analizando su congruencia o no, con la vivencia de las personas afectadas dentro del sistema de salud. Finalmente, se concluye, que los individuos con enfermedades huérfanas ven vulnerado su derecho a la salud2022text (article)application/pdfhttps://dialnet.unirioja.es/servlet/oaiart?codigo=8539432(Revista) ISSN 1692-3030Jurídicas CUC, ISSN 1692-3030, Vol. 18, Nº. 1, 2022 (Ejemplar dedicado a: Jurídicas CUC 2022; 217–240), pags. 477-496spaLICENCIA DE USO: Los documentos a texto completo incluidos en Dialnet son de acceso libre y propiedad de sus autores y/o editores. Por tanto, cualquier acto de reproducción, distribución, comunicación pública y/o transformación total o parcial requiere el consentimiento expreso y escrito de aquéllos. Cualquier enlace al texto completo de estos documentos deberá hacerse a través de la URL oficial de éstos en Dialnet. Más información: https://dialnet.unirioja.es/info/derechosOAI | INTELLECTUAL PROPERTY RIGHTS STATEMENT: Full text documents hosted by Dialnet are protected by copyright and/or related rights. This digital object is accessible without charge, but its use is subject to the licensing conditions set by its authors or editors. Unless expressly stated otherwise in the licensing conditions, you are free to linking, browsing, printing and making a copy for your own personal purposes. All other acts of reproduction and communication to the public are subject to the licensing conditions expressed by editors and authors and require consent from them. Any link to this document should be made using its official URL in Dialnet. More info: https://dialnet.unirioja.es/info/derechosOAI
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Jurídicas CUC, ISSN 1692-3030, Vol. 18, Nº. 1, 2022 (Ejemplar dedicado a: Jurídicas CUC 2022; 217–240), pags. 477-496
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| language |
Spanish
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| topic |
Derechos Humanos
derecho a la salud enfermedades huérfanas normatividad jurídica Estado Human Rights right to health orphan diseases legal regulations State |
| spellingShingle |
Derechos Humanos
derecho a la salud enfermedades huérfanas normatividad jurídica Estado Human Rights right to health orphan diseases legal regulations State Araque Barboza, Francis Yrama Beltrán De la Rosa, Elisama Mozo, Ana Liliana Julio Cajar, Julieth Carolina Enfermedades huerfanas, el estado colombiano y las instituciones privadas de salud |
| description |
Orphan Diseases (E.H.) have been present in the genetic makeup of thousands of human beings worldwide and nationally, affecting not only the proper physical, social and cognitive development of those who suffer from them; but also, preventing the full enjoyment of a happy and healthy life, which, as persons, has been established as a universal right. Such damage, in addition, being linked to the scarce medical investigation of the same, has as a starting point, the meager legal regulations. Under this context, this article arises, with the objective of making visible the legal-social reality of patients with orphan diseases in Colombia. The approach is hermeneutical-interpretive with a documentary-bibliographical method reaching the point of theoretical saturation. A critical reflection on Law 1392 of 2010 was carried out, analyzing its congruence or not, with the experience of the affected people within the health system. Finally, it is concluded that individuals with orphan diseases see their right to health violated
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| format |
Article
|
| author |
Araque Barboza, Francis Yrama
Beltrán De la Rosa, Elisama Mozo, Ana Liliana Julio Cajar, Julieth Carolina |
| author_facet |
Araque Barboza, Francis Yrama
Beltrán De la Rosa, Elisama Mozo, Ana Liliana Julio Cajar, Julieth Carolina |
| author_sort |
Araque Barboza, Francis Yrama
|
| title |
Enfermedades huerfanas, el estado colombiano y las instituciones privadas de salud
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| title_short |
Enfermedades huerfanas, el estado colombiano y las instituciones privadas de salud
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| title_full |
Enfermedades huerfanas, el estado colombiano y las instituciones privadas de salud
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| title_fullStr |
Enfermedades huerfanas, el estado colombiano y las instituciones privadas de salud
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| title_full_unstemmed |
Enfermedades huerfanas, el estado colombiano y las instituciones privadas de salud
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| title_sort |
enfermedades huerfanas, el estado colombiano y las instituciones privadas de salud
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| publishDate |
2022
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| url |
https://dialnet.unirioja.es/servlet/oaiart?codigo=8539432
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| _version_ |
1742345846544924672
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