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Ethical and economic considerations of rare diseases in ethnic minorities: the case of mucopolysaccharidosis VI in Colombia
  1. Diego Rosselli1,
  2. Juan-David Rueda1,
  3. Martha Solano2
  1. 1Clinical Epidemiology and Biostatistics, Pontificia Universidad Javeriana, Bogota, Colombia
  2. 2Department of Neuropediatrics, Fundacion Cardioinfantil, Bogota, Colombia
  1. Correspondence to Dr Diego Rosselli, Clinical Epidemiology and Biostatistics, Pontificia Universidad Javeriana, Carrera 7 No 40-62, Bogota 110311, Colombia; diego.rosselli{at}gmail.com

Abstract

Mucopolysaccharidosis VI is an autosomal recessive lysosomal storage disorder associated with severe disability and premature death. The presence of a mucopolysaccharidosis-like disease in indigenous ethnic groups in Colombia can be inferred from archaeological findings. There are several indigenous patients with mucopolysaccharidosis VI currently receiving enzyme replacement therapy. We discuss the ethical and economic considerations, regarding both direct and indirect costs, of a high-cost orphan disease in a marginalised minority population in a developing country.

  • Research on special populations
  • social aspects
  • clinical ethics
  • cultural pluralism
  • health economics

This is an open-access article distributed under the terms of the Creative Commons Attribution Non-commercial License, which permits use, distribution, and reproduction in any medium, provided the original work is properly cited, the use is non commercial and is otherwise in compliance with the license. See: http://creativecommons.org/licenses/by-nc/2.0/ and http://creativecommons.org/licenses/by-nc/2.0/legalcode.

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Footnotes

  • Funding This study was supported by Biomarin Colombia.

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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