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Organ Transplantation for Individuals with Neurodevelopmental Disorders

Sandra Jensen’s Legacy

Published online by Cambridge University Press:  09 March 2016

KIM J. OVERBY  and
JOSEPH J. FINS
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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.

Keywords

neurodevelopmental disordersintellectual disabilityorgan transplantationmedical ethicshistory of medicinedisability rights
Type
Departments and Columns
Information
Cambridge Quarterly of Healthcare Ethics , Volume 25 , Issue 2 , April 2016 , pp. 272 - 281
Copyright
Copyright © Cambridge University Press 2016 

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References

Notes

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