Organ Transplantation for Individuals with Neurodevelopmental Disorders: Sandra Jensen's Legacy

Kim J. Overby, Joseph Fins

Research output: Contribution to journalArticle

8 Scopus citations

Abstract

In 1996, Sandra Jensen became the first person with Down syndrome to receive a heart-lung transplant. Although it took place almost 20 years ago, her experience continues to shed light on contemporary challenges that individuals with neurodevelopmental disorders face in securing access to transplantation. While overt discrimination has decreased, barriers persist in physician referrals, center-specific decisionmaking regarding wait-listing, and the provision of accommodations for optimizing the assessment and medical management of these individuals. These issues arise from the persistent biases and assumptions of individuals as well as those of a healthcare system that is inadequately positioned to optimally serve the medical needs of the growing number of individuals with functional impairments. More data and greater transparency are needed to understand the nature and extent of ongoing access problems; however, long-term solutions will require changes at the healthcare professional, regional transplant center, and national levels.

Original languageEnglish (US)
Pages (from-to)272-281
Number of pages10
JournalCambridge Quarterly of Healthcare Ethics
Volume25
Issue number2
DOIs
StatePublished - Mar 9 2016

Keywords

  • disability rights
  • history of medicine
  • intellectual disability
  • medical ethics
  • neurodevelopmental disorders
  • organ transplantation

ASJC Scopus subject areas

  • Health Policy
  • Health(social science)
  • Issues, ethics and legal aspects

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