Fraternidad política y enfermedades raras

Rare diseases generally receive less funding for their medical research and treatments than other diseases. Apart from well-known scientific and economic explanations, there are two major ethical positions regarding this fact, the one that approves it for reasons of utilitarian ethics, and the one t...

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Detalles Bibliográficos
Autor: Puyol González, Àngel|||0000-0002-4691-4372
Tipo de recurso: artículo
Fecha de publicación:2021
País:España
Institución:Universitat Autònoma de Barcelona
Repositorio:Dipòsit Digital de Documents de la UAB
Idioma:español
OAI Identifier:oai:ddd.uab.cat:288519
Acceso en línea:https://ddd.uab.cat/record/288519
https://dx.doi.org/urn:doi:10.12795/ARAUCARIA.2021.I46.17
Access Level:acceso abierto
Palabra clave:Bioethics
Fraternity
Rare diseases
Orphan Drugs
Public health ethics
Solidarity
Descripción
Sumario:Rare diseases generally receive less funding for their medical research and treatments than other diseases. Apart from well-known scientific and economic explanations, there are two major ethical positions regarding this fact, the one that approves it for reasons of utilitarian ethics, and the one that condemns it by insisting on egalitarian and individual rights reasons. In this article, I analyse the problems of both types of moral justification, and propose an ethical alternative based on the idea of political fraternity that, applied to rare diseases, avoids the worst consequences of both utilitarianism and the language of individual rights to health and mere egalitarianism.