THE BODY AS GIFT, RESOURCE, AND COMMODITY THE BODY AS GIFT, RESOURCE, AND COMMODITY EXCHANGING ORGANS, TISSUES, AND CELLS IN THE 21ST CENTURY Sara Berglund Ulla Ekström von Essen Martin Gunnarson Markus Idvall Max Liljefors Susanne Lundin Erik Malmqvist Aivita Putnina Silke Schicktanz Mark Schweda Fredrik Svenaeus Catherine Waldby Kristin Zeiler SÖDERTÖRN STUDIES IN PRACTICAL KNOWLEDGE 6 The Body as Gift, Resource, and Commodity SÖdertÖrn Studies in PracticaL KnoWLedge 6 The Body as Gift, Resource, and Commodity Exchanging Organs, Tissues, and Cells in the 21st Century Eds. MARTIN GUNNARSON & FREDRIK SVENAEUS Centre for Studies in Practical Knowledge acknowledges with gratitude the support of the Baltic Sea Foundation that has made this book possible. södertörn studies in practical knowledge 6 isbn: 978-91-86069-49-0 © Södertörns högskola Distribution: Södertörns högskolebibliotek 141 89 Huddinge [email protected] www.sh.se/centrum www.sh.se/publikationer Desiged by Lars Paulsrud Printed by E-Print, Stockholm, 2012 Contents Introduction martin gunnarson & fredrik svenaeus 9 With Levinas against Levinas Steps Towards a Phenomenological Ethics of Bodily Giving in Medicine kristin zeiler 31 The Phenomenology of Organ Transplantation How does the Malfunction and Change of Organs have Effects on Personal Identity? fredrik svenaeus 58 The Relations between the Body and Its Parts Accommodating Stem Cell, Gene, Tissue, and Organ Transplantation Technologies in Latvia aivita putnina 80 Concealed by the “Gift of Life” The Complexities of Living with Dialysis and Kidney Transplantation in Stockholm and Riga martin gunnarson 103 Utility, Trust, and Rights in Swedish Governmental and Expert Discourses on Organ Donation Policy Mixed Messages and Hidden Agendas ulla ekström von essen 137 Bodies Against Meaning De-Subjectification in Body Art and Bioart max liljefors 169 The Body as a Societal Resource in Transnational Giving The Organ-Exchange Organizations of Scandiatransplant and Balttransplant markus idvall 204 Shifting Responsibilities of Giving and Taking Organs? Ethical Considerations of the Public Discourse on Organ Donation and Organ Trade mark schweda & silke schicktanz 235 Reproductive Labour Arbitrage Trading Fertility across European Borders catherine waldby 267 Trading Hair, Trading Cadaver Tissue On the Ethics of Commodifying Bodily Sacrifices and Gifts erik malmqvist 296 “I had to leave” Making Sense of Buying a Kidney Abroad sara berglund & susanne lundin 321 Notes 343 References 366 Author Presentations 396 Introduction Martin Gunnarson Fredrik Svenaeus This book is the outcome of a research project at the Centre for Studies in Practical Knowledge, Södertörn University, funded by the Baltic Sea Foundation. The main participants of the project were one philosopher—Fredrik Svenaeus— one historian—Ulla Ekström von Essen—and three ethnolo- gists—Martin Gunnarson, Susanne Lundin and Markus Idvall—from Södertörn University and Lund University, but we also benefitted from the help and advice of medical researchers and physicians from the Karolinska Institutet —Annika Tibell and C. G. Groth—and many other scholars from Sweden and abroad, especially from the Baltic Sea Re- gion. You will find some of our collaborators represented as authors in this volume, but most of them are not on the list of participants, since they, for ethical reasons, have to remain anonymous. The persons in question have helped us with information about and access to practices which are precarious objects of study—organ transplantation and or- gan trade—subjects that are highly sensitive and often hard 9 Martin Gunnarson & Fredrik Svenaeus to speak about for the people involved. We want to thank the health care personnel, patients and other persons, who have generously offered us their time without any other return than to be able to support the growth of knowledge and reflection in this field. We hope that this book and other outcomes of our research project, such as articles in jour- nals and newspapers, and presentations at conferences and meetings with the public, will help to build sound political judgement and policies on organ, tissue and cell donation. The rules and procedures of organ, tissue and cell transfer are, indeed, vital, not only in the sense that they concern who will live and who will die, but also in the sense that the decisions in question determine how we are to view the moral essence of human relationships as such. What duties do we owe to each other regarding the giving away of what is most intimately ours: our bodies and the organs, tissues and cells they consist of? And what limits should we set regard- ing procuring and transferring the “things” in question? Organ transplantation took its first tottering steps in the late 1950s. Successful transplantation of tissues and cells, such as skin and blood, began a little bit earlier than that (Tilney 2003). Organ transplantation has in the course of the last 50 years expanded exponentially, both in terms of survival rates and the number of people on the waiting lists. Advances in immunosuppression, prevention of infection and other improvements in medical measures have led to success, and, as a result, the number of patients who are considered eligible for transplantation has increased. The range of conditions for which transplantation is offered has 10 widened, and transplantable organs now include kidney, Introduction liver, heart, pancreas, and lung. Dead donors can provide all of these organs, while living donation is restricted to kidney and sections of the liver, lung, and pancreas. A consequence of this dramatic expansion in life-saving potentiality has been a worldwide demand for organs, far exceeding their current availability from either living or cadaveric sources. From all corners of the globe, one now hears the talk of a “shortage of organs” (Lock and Nguyen 2010, 234–36). Parallel to the advancements in organ transplantation we have also witnessed medical developments related to the transfer between bodies of tissues and cells that are not strictly organs, such as bone marrow, blood, skin, and gam- etes. We are moving into an era of “tissue economies”: the transfer and circulation of human tissue on a global scale (Waldby and Mitchell 2006). This includes the donation of, and trade in, sperms and ova, as well as the in vitro ferti- lization and implantation of embryos, and, in some cases, the rental of uteruses for these embryos to grow in (sur- rogate motherhood). Tissue engineering (growing organs from stem cells cultivated in the laboratory) is a technology which might become a reality in the future. But considering the case of xenotransplantation (using genetically modified animals to harvest organs for humans), a technology which looked very promising 20 years ago but came to a total halt because of the risks of zoonosis (transfer of viruses between species), one should be careful when assessing what clinical options organ engineering in the laboratory will be able to provide (Sharp 2007). There are three metaphors that guide contemporary thinking about organ, tissue, and cell transplantation as it 11 Martin Gunnarson & Fredrik Svenaeus is increasingly focused and debated. These metaphors: the body being looked upon as a gift, as a resource, and, as a commodity also make out the main title of our research project, and, indeed, the title of this book. Although the gift is the sanctioned metaphor for donating parts of the body, the underlying perspective from the side of states, authori- ties, and the medical establishment often seems to be that the body shall be understood as a resource. The recent shift in many countries’ legislation from informed to presumed consent regarding organ donation from brain-dead patients is a clear sign of this. So are the even more recent attempts to reframe and expand the number of bodies available for do- nation by implementing DCD (donation after cardiac death) in cases where total brain infarction does not occur, but the hope of recovery to consciousness and a life worth living is (close to) zero. Giving away one’s organs when one does not need them any more (when one is dead, or, perhaps rather, “dead enough”) is increasingly framed by states as a gift one cannot refuse to give, provided that one has been properly informed about what the decision means to those in need of an organ. Framed in this manner, the refusal to donate becomes viewed as irrational. What rational person would want to keep something that he or she does not need when others are in desperate need of that very thing? As a conse- quence, all citizens’ willingness to give the “gift of life” of organ donation can be presumed. Organs are too precious to be wasted because people are irrational or egoistic, or sim- ply because they do not want to think about their own death before they pass away. This is the message sent worldwide 12 by the metaphor of the “gift of life”. Introduction Thus, paradoxically, the “gift of life” metaphor simulta- neously underpins and conceals the prevalent “resourci- fication” of organs for transplantation. The view of organ donation as a gift one cannot refuse to give, resourcifies the body. At the same time, however, this is effectively hidden from view precisely by the continuous use of the metaphor of the gift. But is a gift that is presumed really a gift? And if one’s dead body is such a valuable resource for helping others in grave need, should it still be considered an object that one is entitled to control the ways of even when one is dead? Perhaps the right thing to do would be to once and for all let go of the gift metaphor and officially start referring to the brain-dead body as a resource. In the wake of such a rhetorical shift, a political space might open up allowing the implementation of policies aimed at increasing the number of organs available for transplantation.