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Organ Donation Regulation and Reimbursement Programming Through a Policy Coherence Perspective

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Organ Donation Regulation and Reimbursement Programming Through a Policy Coherence Perspective Organ Donation Regulation and Reimbursement Programming Through a Policy Coherence Perspective A Thesis Submitted to the Faculty of Graduate Studies and Research In Partial Fulfillment of the Requirements For the Degree of Master of Public Policy University of Regina By Calum William James Smee Regina, Saskatchewan November 2018 Copyright 2018: C.W.J. Smee UNIVERSITY OF REGINA FACULTY OF GRADUATE STUDIES AND RESEARCH SUPERVISORY AND EXAMINING COMMITTEE Calum William James Smee, candidate for the degree of Master of Public Policy, has presented a thesis titled, Organ Donation Regulation and Reimbursement Programming Through a Policy Coherence Perspective, in an oral examination held on October 29, 2018. The following committee members have found the thesis acceptable in form and content, and that the candidate demonstrated satisfactory knowledge of the subject material. External Examiner: Dr. Joseph Garcea, University of Saskatchewan Supervisor: Dr. Amy Zarzeczney, Johnson-Shoyama Graduate Studies Committee Member: Dr. Cheryl Camillo, Johnson-Shoyama Graduate School Committee Member: Dr. Daniel Beland, Johnson-Shoyama Graduate School Chair of Defense: Dr. James Farney, Department of Politics and Insternational Studies Abstract There is a substantial unmet need for donor organs for transplantation purposes throughout Canada (Blood, Organ and Tissue Donation 2016). Each of the provinces and territories has legislation governing organ donation, and each of these pieces of legislation contains a prohibition on the exchange of organs for what is officially termed ‘valuable consideration’. These prohibitions operate alongside public programs intended to encourage organ donation through the use of incentives. Programs reimbursing costs associated with being an organ donor are a common type of incentive to donate. The common prohibition on the exchange of organs for valuable consideration draws attention for its apparent incompatibility with public programs offering incentives to donate (Caulfield 2014). This apparent incompatibility, combined with the unmet need for donor organs, calls for an examination of the regulatory regime governing organ donation. This research examines the relationship between prohibitions on the exchange of organs for valuable consideration and public programs offering incentives to organ donors using a policy coherence theoretical framework. I have created a framework to measure the policy coherence between the regulatory regimes governing organ donation and programming within the provinces and territories. Policy coherence is examined both within and between provincial and territorial jurisdictions. This policy coherence framework examines the objectives of organ donation legislation, and public organ donation programming for conflicts and complementarities. My findings reveal relatively coherent policy domains between provinces and territories but identify policy conflict in the relationship between organ donation regulation and reimbursement programming operated by the primary organ donation agencies in the provinces and territories. i Acknowledgements I would like to acknowledge the support I received from the Faculty of Graduate Studies and Research, and the Johnson Shoyama Graduate School of Public Policy at the University of Regina. I would also like to acknowledge the support of the Canadian National Transplant Research Program (CNTRP) which was supported by the CIHR and partners (Grant Number TFU 127880). This thesis was produced as part of that program and grant. I would also like to acknowledge the guidance and support I have received from my thesis supervisor Professor Amy Zarzeczny, committee members Dr. Daniel Béland, Professor Cheryl Camillo and external examiner Dr. Joseph Garcea. ii Table of Contents Abstract ......................................................................................................................i Acknowledgements .................................................................................................. ii Table of Contents ................................................................................................ iii-iv Chapter 1: Introduction ....................................................................................... 1-11 1.1 Policy Coherence Introduction ..................................................................................... 2 1.2 Context .......................................................................................................................... 3 1.3 Trends in Organ Donation ............................................................................................ 6 1.4 Problem Statement ........................................................................................................ 8 1.5 Research Questions ....................................................................................................... 8 1.6 Research Design Description ........................................................................................ 9 Chapter 2: Literature Review ............................................................................ 12-28 2.1 Organ Donation Review ............................................................................................. 13 2.1.1 Organ Donation and Incentives Overview ................................................... 13 2.1.2 Organ Donation Organization in Canada ..................................................... 14 2.1.3 The International Organ Donation Context ................................................. 15 2.1.4 Iranian Organ Donation ............................................................................... 18 2.1.5 Incentive Impacts ......................................................................................... 20 2.1.6 Incentives and Consent ................................................................................ 22 2.2 Policy Coherence Review ........................................................................................... 23 2.2.1 Policy Coherence ......................................................................................... 23 2.2.2 Types of Policy Coherence .......................................................................... 25 2.2.3 Policy Coherence and Program Implementation ......................................... 26 Chapter 3: Methodology .................................................................................... 29-41 3.1 Data Collection ........................................................................................................... 30 3.2 Data Analysis .............................................................................................................. 32 3.3 Coding Nodes.............................................................................................................. 34 3.4 Policy Coherence Assessment .................................................................................... 37 3.5 Coding Frame.............................................................................................................. 40 Chapter 4: Analysis ........................................................................................... 42-66 4.1 How the use of incentives in organ donation is regulated across Canada (Research Question 1) ........................................................................................................................ 43 4.2 The types of incentive-based organ donation programming in Canada (Research Question Two) .................................................................................................................. 46 4.2.1 Expense Maximum ...................................................................................... 47 4.2.2 Expense Eligibility ....................................................................................... 48 4.2.3 Individual Eligibility .................................................................................... 48 4.2.4 Reimbursement Role .................................................................................... 48 iii 4.3 Vertical and horizontal policy coherence in organ donation regulation and programming (Research Question Three and Four) ......................................................... 52 4.3.1 Vertical and Horizontal Coherence .............................................................. 52 4.3.2 Western Geographic Region ........................................................................ 53 4.3.2.1 Commodification .......................................................................... 53 4.3.2.2 Altruism ........................................................................................ 54 4.3.2.3 Alternate Models of Organ Donation ........................................... 54 4.3.2.4 Welfare .......................................................................................... 55 4.3.2.5 Statements of Purpose ................................................................... 56 4.3.2.6 Reimbursement Prohibition Policy Conflict ................................. 57 4.3.3 Eastern Geographic Region ......................................................................... 58 4.3.3.1 Commodification .......................................................................... 60 4.3.3.2 Altruism ........................................................................................ 61 4.3.3.3 Alternate Models of Organ Donation ........................................... 61 4.3.3.4 Welfare .........................................................................................
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