Objective: To report a case of a Huntington’s Disease (HD) patient who underwent living kidney donation and examine the decision-making process and ethical considerations of this.

Background: HD is an autosomal dominant, incurable, neurodegenerative disease with motor, cognitive, and psychiatric symptoms.  According to United Network for Organ Sharing, approximately 95,000 people within the United States await kidney donation, and many will die before receiving a new kidney. There are currently no published ethical or medical guidelines regarding kidney donation in persons with HD.

Method: A 46-year old Caucasian male with 6 years of clinically manifest and genetically confirmed HD wished to donate his kidney to an unnamed recipient. He first expressed interest in altruistic kidney donation with the thought that “he wanted to help others.” His clinical exam revealed moderate chorea, mildly impaired cognitive functions, and normal psychological functions. Discussions between the HD and transplant teams ensued as literature regarding this in HD is scant. Our patient underwent full neuropsychological testing revealing mild deficits in executive functions, recent memory, and visual perception, consistent with mild cognitive impairment, and stable psychological function. After completing prerequisite testing (i.e., laboratory and urine tests, ECG, chest x-ray, and CTA abdomen and pelvis, and neuropsychological testing) by the HD and transplant teams, he was deemed eligible for kidney donation. He underwent laparoscopic left-sided nephrectomy 16 months after first inquiry.

Results: He tolerated the procedure well and had an excellent post-operative course. Follow up office visit one week post-op revealed discontinuation of pain medications and resumption of biking for transportation. His HD symptoms remained stable throughout hospitalization and post-operative course.

Conclusion: After undergoing the appropriate neurological, neuropsychological, and medical screening and pre-operative work-up, we believe a diagnosis of HD is not an absolute contraindication for kidney donation. A team approach and communication between the HD and transplant teams are essential. Decision-making capabilities, cognitive status, co-morbid conditions, and support system must be taken into account.

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MDS Abstracts - https://www.mdsabstracts.org/abstract/successful-altruistic-living-kidney-donation-in-a-patient-with-huntingtons-disease/