Bioética da proteção e tratamento de doenças genéticas raras no Brasil: o caso das doenças de depósito lisossomal

Cadernos de Saúde Pública

Raquel Boy²  Fermin Roland Schramm¹ 

[1] ,Universidade do Estado do Rio de Janeiro Faculdade de Ciências Médicas Rio de Janeiro,Brasil

关键词: Lysossomal Storage Diseases;    Exceptional Drugs;    Bioethics;    Doenças por Armazenamento dos Lisossomos;    Medicamentos Excepcionais;    Bioética;   

DOI  :  10.1590/S0102-311X2009000600010

来源: SciELO

【 摘 要 】

This study aimed to discuss the morality of public funding for highly expensive orphan drugs for treatment of rare genetic diseases, using tools from bioethics, especially the principle of protection, applicable to vulnerable individuals and populations. Based on this principle, and considering the provisions of the Unified National Health System (SUS), the article argues for the state's moral obligation to provide public policies to ensure care for individuals with genetic diseases like lysosomal storage disorders, who can thus be viewed as "injured", besides suggesting measures to implement and ensure the sustainability of policies with an emphasis on resource allocation, targeting, and equity.

【 授权许可】

CC BY   
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