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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| 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 |
| 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. |
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