Access to transplantation for persons with intellectual disability: Strategies for nondiscrimination.
disparities
editorial/personal viewpoint
ethics
ethics and public policy
guidelines
law/legislation
organ transplantation in general
patient characteristics
pediatrics
recipient selection
Journal
American journal of transplantation : official journal of the American Society of Transplantation and the American Society of Transplant Surgeons
ISSN: 1600-6143
Titre abrégé: Am J Transplant
Pays: United States
ID NLM: 100968638
Informations de publication
Date de publication:
08 2020
08 2020
Historique:
received:
15
09
2019
revised:
21
11
2019
accepted:
14
12
2019
pubmed:
25
12
2019
medline:
22
6
2021
entrez:
25
12
2019
Statut:
ppublish
Résumé
Disqualifying patients with intellectual disabilities (ID) from transplantation has received growing attention from the media, state legislatures, the Office of Civil Rights, and recently the National Council on Disability, as well as internationally. Compared with evidence-based criteria used to determine transplant eligibility, the ID criterion remains controversial because of its potential to be discriminatory, subjective, and because its relationship to outcomes is uncertain. Use of ID in determining transplant candidacy may stem partly from perceived worse adherence and outcomes for patients with ID, fear of penalties to transplant centers for poor outcomes, and stigma surrounding the quality of life for people with ID. However, using ID as a contraindication to solid organ transplantation is not evidence-based and reduces equitable access to transplantation, disadvantaging an already vulnerable population. Variability and lack of transparency in referral and evaluation allows for gatekeeping, threatens patient autonomy, limits access to lifesaving treatment, and may be seen as unfair. We examine the benefits and harms of using ID as a transplant eligibility criterion, review current clinical evidence and ethical considerations, and make recommendations for transplant teams and regulatory agencies to ensure fair access to transplant for individuals with ID.
Identifiants
pubmed: 31873978
doi: 10.1111/ajt.15755
pii: S1600-6135(22)22506-4
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
2009-2016Informations de copyright
© 2019 The American Society of Transplantation and the American Society of Transplant Surgeons.
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