Rare Disease, Advocacy and Justice: Intersecting Disparities in Research and Clinical Care. Am J Bioeth 2023 Jul;23(7):17-26
Date
05/19/2023Pubmed ID
37204146Pubmed Central ID
PMC10321139DOI
10.1080/15265161.2023.2207500Scopus ID
2-s2.0-85159680708 (requires institutional sign-in at Scopus site) 35 CitationsAbstract
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.
Author List
Halley MC, Halverson CME, Tabor HK, Goldenberg AJAuthor
Meghan C. Halley PhD, BA, MPH Assistant Professor in the Institute for Health and Humanity department at Medical College of WisconsinMESH terms used to index this publication - Major topics in bold
HumansRare Diseases
Social Justice
United States
