This work is protected by copyright and other intellectual property rights and duplication or sale of all or part is not permitted, except that material may be duplicated by you for research, private study, criticism/review or educational purposes. Electronic or print copies are for your own personal, non- commercial use and shall not be passed to any other individual. No quotation may be published without proper acknowledgement. For any other use, or to quote extensively from the work, permission must be obtained from the copyright holder/s. In search of a system which acquires the maximum number of organs and is consistent with a society's values. Victoria Claire Thornton Professional Doctorate in Medical Ethics: DMEDETH. October 2015. Keele University. Abstract. In 2008, the Organ Donation Taskforce was asked to consider the impact of introducing an opt-out system for organ donation in the United Kingdom. The Taskforce conducted a thorough investigation, which included information gathering from both the public and experts in the field of healthcare, ethics and law and a thorough appraisal of the countries currently operating an opt-out system. Having reviewed this evidence the ODT conceded that whilst the numbers of organs generated may increase under an opt-out system, conversely, because of the way the system actually works, they felt there was a risk that its introduction may cause a backlash amongst the general public resulting in a decrease in organ donations. They based their concerns around fears that such a system would remove the potential for spontaneous acts of goodwill, denying people the opportunity to give a gift, and may deny the opportunity for individuals to determine whether their organs should be donated, thereby precluding choice and the right to self-determination. This might ultimately compromise public trust in the system. This thesis challenges the assumptions made by the Organ Donation Taskforce in respect of introducing an opt-out system. It casts doubt on their claims about compromising privacy interests and then looks to reconcile the potential issues which may arise under an opt-out system; these are preventing the choice to act altruistically and acting in such a way as to undermine public trust. Both of these may result in policy failure. It will advocate a system which addresses the issues raised by the ODT and acts to provide respect for self-determination; this is a soft opt-out system with a combined registry. Such a system would increase the supply of organs for those in need of a transplant, and remain consistent with a society's values in terms of demonstrating respect for individual choice regarding donation. i Contents Abstract. ............................................................................................................................................ i Table of Cases ................................................................................................................................. iv Table of Statutes .............................................................................................................................. v List of Abbreviations. ...................................................................................................................... vi Acknowledgements. ....................................................................................................................... vii Introduction. .................................................................................................................................... 1 Chapter 1: Background to Organ donation and Transplantation. ................................................. 16 1.1: The Value of Transplantation. ......................................................................................... 16 1.2: Policy Provision and Legislation for Organ Donation and Transplantation in the UK. ... 18 1.3: An Alternative System for Organ Procurement. ............................................................. 25 1.4: In Search of an Organ Procurement System which acquires the Maximum Number of Organs and is Consistent with a Society's Values. ................................................................. 31 1.5: The Importance of Public Opinion. ................................................................................. 32 Chapter 2. The Relevance of Property Discourse in an Organ Procurement Policy. ..................... 35 2.1: Introduction. ................................................................................................................... 35 2.2: Property Discourse in the General Setting. .................................................................... 37 2.3: Is Property Discourse Appropriate to Discussions around an Organ Procurement Policy? ............................................................................................................................................... 39 2.4: The Body as Property: the Legal Position. ...................................................................... 40 2.5: Rights to the Body utilising a Property Rights Approach: the Ethical Position. .............. 46 2.6: The Body versus the Corpse. ........................................................................................... 55 2.7: Conclusion. ...................................................................................................................... 58 Chapter 3. Respect for Privacy Interests, Decision-Making and Cadaveric Organ Donation........ 61 3.1: Introduction. ................................................................................................................... 61 3.2: The Importance of Autonomy and its Place in the Current Opt-In System. ................... 63 3.3: Types of Autonomy. ........................................................................................................ 69 3.4: Respecting the Capacity for Autonomy. ......................................................................... 72 3.5: Respect for Autonomous Choices. .................................................................................. 74 3.6: Self-Ownership, Sovereignty and One’s Right to Self-Determination. ........................... 77 3.7: Interests and Harms. ....................................................................................................... 81 3.8: Respect for Autonomy and the Role of the Relatives. .................................................... 87 3.9: Conclusion. ...................................................................................................................... 92 Chapter 4: Organ Donation: providing an opportunity to make an altruistic gesture. ................. 94 ii 4.1: Introduction. ................................................................................................................... 94 4.2: The Value of Gift-giving. .................................................................................................. 97 4.3: The Emphasis on Gift-Giving in an Organ Procurement Policy. ...................................... 99 4.4: Organ Donation as the ‘Gift of Life’: an Appropriate Discourse and Philosophical Approach to Take? ............................................................................................................... 100 4.5: The Role of Altruism in an Organ Donation Policy. ....................................................... 108 4.6: Incorporating Altruism into an Organ Procurement Policy. ......................................... 116 4.7: Conclusion. .................................................................................................................... 123 Chapter 5: Public Trust and Organ Donation. .............................................................................. 125 5.1: Introduction. ................................................................................................................. 125 5.2: The Importance of Trust. .............................................................................................. 127 5.3: Consequences of a Breach of Trust............................................................................... 138 5.4: Facilitating Policy Success. ............................................................................................ 144 5.5: The Importance of Public Opinion. ............................................................................... 147 5.6: Addressing and Promoting Trust in an Organ Procurement Policy. ............................. 152 5.7: Conclusion. .................................................................................................................... 162 Conclusion: The Way Forward for Organ Procurement in the UK. .............................................. 165 A Soft Opt-Out System with a Combined Registry in the UK. .............................................. 168 References. .................................................................................................................................. 175 iii Table of Cases AB v Leeds Teaching Hospital NHS Trust(2005) ............................................................................. 44 Brotherton v Cleveland (1991) ....................................................................................................... 40 Chester v Afshar(2004) ................................................................................................................. 65 Dobson v North Tyneside Health Authority (1997) ......................................................................