Rare Disease, Advocacy and Justice: Intersecting Disparities in Research and Clinical Care.
Am J Bioeth
; 23(7): 17-26, 2023 07.
Article
en En
| MEDLINE
| ID: mdl-37204146
ABSTRACT
Rare genetic diseases collectively impact millions of individuals in the United States. These patients and their families share many challenges including delayed diagnosis, lack of knowledgeable providers, and limited economic incentives to develop new therapies for small patient groups. As such, rare disease patients and families often must rely on advocacy, including both self-advocacy to access clinical care and public advocacy to advance research. However, these demands raise serious concerns for equity, as both care and research for a given disease can depend on the education, financial resources, and social capital available to the patients in a given community. In this article, we utilize three case examples to illustrate ethical challenges at the intersection of rare diseases, advocacy and justice, including how reliance on advocacy in rare disease may drive unintended consequences for equity. We conclude with a discussion of opportunities for diverse stakeholders to begin to address these challenges.
Palabras clave
Texto completo:
1
Bases de datos:
MEDLINE
Asunto principal:
Justicia Social
/
Enfermedades Raras
Límite:
Humans
País/Región como asunto:
America do norte
Idioma:
En
Revista:
Am J Bioeth
Asunto de la revista:
ETICA
Año:
2023
Tipo del documento:
Article