Organ Transplantation Compassion and commerce Selected readings from IJME Editors Sanjay Nagral, Sandhya Srinivasan, Meenakshi D’Cruz INDIAN JOURNAL OF MEDICAL ETHICS Organ Transplantation Compassion and Commerce Selected readings from IJME Editors Sanjay Nagral Sandhya Srinivasan Meenakshi D’Cruz Forum for Medical Ethics Society, Mumbai Organ Transplantation: Compassion and commerce Selected readings from IJME January 2017 Published by Forum for Medical Ethics Society O-18, Bhavna, Veer Savarkar Marg, Prabhadevi, Mumbai 400025 India. Editors Sanjay Nagral, Sandhya Srinivasan, Meenakshi D’Cruz Acknowledgements The editors wish to thank all the authors whose articles have been reprinted in this volume. They sincerely appreciate the meticulous work of Shraddha VK in the production of the volume. They thank Satish Kulkarni for handling the layout of the anthology in a very short time, Vijaykumar Sarang for the cover design. Cover Image Picasso’s painting of the Minotaur, part human - part bull, from Greek mythology. Many cultures have myths about half animal, half human figures. In modern transplantation, xenotransplantation, in which animal organs have been transplanted into humans with poor success, has spawned much ethical debate. Printed at Vibha Offset, Royal Industrial Estate, Wadala, Mumbai 400 031 Selected readings 1 Contents Introduction 4 Sanjay Nagral Ethical problems in renal transplantation: a personal view 8 M K Mani Organs for sale 15 Janet Radcliffe-Richards Organs for sale (continued) 21 Anil Pilgaonkar The ethics of organ selling: a libertarian perspective 26 Harold Kyriazi The case against kidney sales 34 George Thomas Should brain death be recognised as a clinical end point of care? 39 Sunil K Pandya Why our cadaver donation programme doesn’t work 44 Harsha Deshmukh Issues in organ transplantation 47 B N Colabawalla Human organ sale: the Kerala story 56 Jayakrishnan T, Jeeja M C Ethical dilemmas in living donor liver transplantation 60 A S Soin Living donor liver transplantation 64 A V Srinivas Response: Living donor liver transplantation 70 M Veera Prasad 2 Organ Transplantation Asia’s organ farms 77 Aamir M Jafarey, George Thomas, Aasim Ahmad, Sandhya Srinivasan Working towards ethical organ transplants 82 Sunil Shroff Deceased-donor kidney transplantation in Iran: trends, barriers and opportunities 87 Behzad Einollahi, Mohammad-Hossein Nourbala, Saeid Bahaeloo-Horeh, Shervin Assari, Mahboob Lessan-Pezeshki, Naser Simforoosh Sex imbalances in kidney transplants in Iran 96 Mohammad Hossein Nourbala, Vahid Pourfarziani, Eghlim Nemati, Saeed Taheri, Mahboob Lessan-Pezeshki, Behzad Einollahi Organ transplant and presumed consent: towards an “opting out” 100 Jyotika Kaushik Presumed consent: a problematic concept 109 Aamir M Jafarey, Farhat Moazam Will presumed consent make transplantation accessible, ethical and affordable in India? 115 Sanjay Nagral Issues related to non-heart-beating organ donation 120 Rajesh Bardale Are we ready for non-heart-beating organ donation in India? 128 Sanjay Nagral Living unrelated kidney donors: ethical aspects of living kidney donation in Brazil 132 Gustavo Fernandes Ferreira, Clarissa Diniz Guedez Pakistan’s experience with kidney transplantation and trade: a call for international solidarity 139 Farhat Moazam, Aamir M Jafarey Selected readings 3 Deceased donor renal transplantation and the disruptive effect of commercial transplants: the experience of Oman 155 Mohsin N, Al-Busaidy Q, Al-Marhuby H, Al Lawati J, Daar AS Reaching self-sufficiency in deceased organ donation in Asia: harsh realities and ethical concerns 165 Mustafa Al-Mousawi Deceased organ donation in India: Where do we go from here? 174 Sanjay Nagral, J Amalorpavanathan After presumed consent: a review of organ donation in Singapore 187 Jacqueline JL Chin, Theodora H Kwok Organ donation in the Philippines: Should the dead do more? 198 Leonardo D De Castro Unrelated renal transplantation: an ethical enigma 219 Gaurav Aggarwal, Samiran Adhikary Trade in kidneys is ethically intolerable 230 Dominique E Martin Living kidney donation and masked nationalism in Israel 239 Miran Epstein The unfair trade: Why organ sale is indefensible 249 Siby K George Contributors 268 List of articles on transplantation published in IJME 272 4 Organ Transplantation Introduction SANJAY NAGRAL Organ transplantation must surely count amongst the worst ethical quagmires for medical professionals in particular and for society in general – one that, paradoxically, has been created by the tremendous advances of modern medicine. Given its very premise of desperate patients dying of organ failure and a massive demand supply deficit, it provokes sharp, passionate debates and opinions. The subject therefore makes a huge demand on the discipline of bioethics, touching upon morality, religion, politics, gender, economics and philosophy. Indeed, the global ethics conversation has attempted to engage with this subject regularly and in depth. There is an unfortunate dimension to organ transplantation in the poorer regions of the world, especially South Asia, in the form of an organ market. Unethical transplant practices in the region, as much as they are a failure of regulation and ethical oversight, are also about the fault lines of society, that include class and gender. It is no surprise therefore that the Indian Journal of Medical Ethics, which is grounded in activism, has from its very beginning devoted significant attention and space to the subject. As IJME enters its 25th year of publication, we thought of putting together what we believe is a rich and critical contribution to the transplant debate in the form of an anthology. As the reader may appreciate, IJME has traversed the spectrum of the transplant ethics discourse over the years, beginning with brief and often personalised comments and moving to more complex analyses. The transformation of IJME from a small newsletter to an academically robust journal is also reflected in this anthology. Transplantation is a subject that pops up in the form of scandal with a sickening regularity every few years in the media in India. Selected readings 5 Whilst the media has often performed the role of a whistle blower, its focus is usually on the sensational, and its interest transient. As for academia, with some exceptions both mainstream medical journals and social science publications have largely chosen to ignore the issue. Non-governmental organisations working in the area have generally focussed on public campaigns to promote deceased donation. Thus IJME has partially filled the need for a thorough analysis through the moral, social and cultural prisms that this subject deserves, but the debate should continue. The articles in this collection are presented in the order that they were published, and are not grouped according to any theme. Given the nature of the subject, it is unavoidable that certain issues have been revisited more than once over the years. The articles were chosen as they flag some of the critical themes and represent viewpoints of some of the key players. The contributors include medical professionals at the forefront of efforts to ensure ethical transplant programmes. For example, the essays by Mani (1995) and Colabawalla (2001) are commentaries on ethical dilemmas by two senior physicians who were pioneers of transplantation in India. The responsibilities of medical professionals are repeatedly mentioned in the articles here. There are, of course, debates on the ethics of paid transplants and a regulated trade – in the form of arguments supporting it, by Radcliffe Richards (1996) and Kyriazi (2001), with responses by Pilgaokar (1996) and Thomas (2001). More recently the argument was resurrected by Aggarwal (2016), with a response from Martin (2016). A report by Jayakrishnan and Jeeja from Kerala (2003) is illustrative of how the kidney trade works and of the inadequate response by monitoring agencies, the police, and professional associations. In 2007, a joint editorial by Indian and Pakistani authors (Jafarey, Thomas, Ahmad and Srinivasan) focussed on South Asia as the theatre of this phenomenon. In the last few years, deceased donation has been at the centre of public and media focus in India. Promotion of deceased donation has resulted in an increased rate of deceased donation in some states. However, it has led to its own set of dilemmas, especially the unfortunate manner in which the Indian law has linked brain 6 Organ Transplantation death and withdrawal of life support for donation. One of the articles (Pandya 2001) specifically looks at this issue.The role of authorisation committees formed under the Transplantation of Human Organs Act is also examined in a report (Shroff 2007). A comment by a transplant coordinator describes the barriers to strong deceased donation programmes (Deshmukh 2001).Articles have also explored the pros and cons of methods to increase availability of the deceased donor pool, such as presumed consent (Kaushik 2009; Jafarey and Moazam 2009; Nagral 2009) and non- heart beating donation (Bardale 2010; Nagral 2010). In 2014, IJME devoted a theme section to deceased donation. The contribution from India (Nagral and Amalorpavanathan) traces the history of this movement in India whilst also identifying its problems. The experiences of deceased donation programmes in Pakistan (Moazam and Jafarey), Kuwait (Mousawi), Oman (Mohsin et al) and the Philippines (De Castro) form a part of this group. The need for coordinated and sustained efforts by governments