Towards an Understanding of the Legal and Experiential Dimensions of the Living Kidney Donor Pathway

Abstract

Living kidney donation (LKDn) occurs within a complex legal and regulatory framework aiming to
safeguard donors and increase donation rates. However, little attention has been given to how donors
experience the legal realities of their assessment or how their interactions with transplant professionals
shape their experiences. This thesis addresses this gap through the overarching question: Do we truly
understand living kidney donors (LKDs) and the LKD pathway? Focusing on England and Wales, the
thesis is comprised of three core Parts. Part A and B draw on 27 interviews with LKDs, while Part C is
based on eight elite interviews with transplant professionals and policymakers.

Part A challenges the long-held ideology that altruism ought to be the guiding value for LKDn. This is
achieved by, i) revisiting the parliamentary debates surrounding the organ and tissue donations laws
preceding the Human Tissue Act 2004, and ii) analysing donor interviews to produce a Venn diagram
capturing the plurality of donor motives. This analysis evidenced that it is not possible, nor is it
practicable, to reduce individuals’ reasons for donating to a single motivator. Part B examines the donor
assessment, exploring the prioritisation policy, mental health assessment, re-direction of the kidney
‘form’, reimbursement scheme, and the HTA interview. Insight from the LKD interviews underscore
flaws in the pathway, showing that it is built on a poor understanding of donors’ perspectives on the
legal realities of their work-up. Part C shifts the focus to how clinicians and policymakers shape the
LKDs’ assessment experience. While some insights are provided on resource constraints, the main
contribution of Part C lies in elucidating the striking inconsistencies in how donors are assessed
according to their relationship to the recipient, age and / or gender. Ultimately, this thesis, offers
recommendations for clinical practice, legal reform, and future areas of research.

Date of Award	10 Dec 2024
Original language	English
Awarding Institution	University of Bristol
Supervisor	Sheelagh McGuinness (Supervisor) & John Coggon (Supervisor)