Organ Transplantation for Individuals with Neurodevelopmental Disorders: Sandra Jensen’s Legacy
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 transplant...
| Published in: | Cambridge quarterly of healthcare ethics |
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| Authors: | ; |
| Format: | Electronic Article |
| Language: | English |
| Check availability: | HBZ Gateway |
| Journals Online & Print: | Drawer...
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| Fernleihe: | Fernleihe für die Fachinformationsdienste |
| Published: |
Cambridge Univ. Press
2016
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| In: |
Cambridge quarterly of healthcare ethics
Year: 2016, Volume: 25, Issue: 2, Pages: 272-281 |
| Further subjects: | B
History of Medicine
B Intellectual disability B Medical Ethics B Organ Transplantation B disability rights B neurodevelopmental disorders |
| Online Access: |
Volltext (lizenzpflichtig) Volltext (lizenzpflichtig) |
| Summary: | 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. |
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| ISSN: | 1469-2147 |
| Contains: | Enthalten in: Cambridge quarterly of healthcare ethics
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| Persistent identifiers: | DOI: 10.1017/S0963180115000572 |