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Matching Organs with Donors: Legality and Kinship in Transplants
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Commencer à lireLongueur: 344 pages5 heures
- Éditeur:
- University of Pennsylvania Press
- Sortie:
- Aug 16, 2012
- ISBN:
- 9780812206500
- Format:
- Livre
Description
While the traffic in human organs stirs outrage and condemnation, donations of such material are perceived as highly ethical. In reality, the line between illicit trafficking and admirable donation is not so sharply drawn. Those entangled in the legal, social, and commercial dimensions of transplanting organs must reconcile motives, bureaucracy, and medical desperation. Matching Organs with Donors: Legality and Kinship in Transplants examines the tensions between law and practice in the world of organ transplants—and the inventive routes patients may take around the law while going through legal processes.
In this sensitive ethnography, Marie-Andrée Jacob reveals the methods and mindsets of doctors, administrators, gray-sector workers, patients, donors, and sellers in Israel's living kidney transplant bureaus. Matching Organs with Donors describes how suitable matches are identified between donor and recipient using terms borrowed from definitions of kinship. Jacob presents a subtle portrait of the shifting relationships between organ donors/sellers, patients, their brokers, and hospital officials who often accept questionably obtained organs.
Jacob's incisive look at the cultural landscapes of transplantation in Israel has wider implications. Matching Organs with Donors deepens our understanding of the law and management of informed consent, decision-making among hospital professionals, and the shadowy borders between altruism and commerce.
Informations sur le livre
Matching Organs with Donors: Legality and Kinship in Transplants
Longueur: 344 pages5 heures
Description
While the traffic in human organs stirs outrage and condemnation, donations of such material are perceived as highly ethical. In reality, the line between illicit trafficking and admirable donation is not so sharply drawn. Those entangled in the legal, social, and commercial dimensions of transplanting organs must reconcile motives, bureaucracy, and medical desperation. Matching Organs with Donors: Legality and Kinship in Transplants examines the tensions between law and practice in the world of organ transplants—and the inventive routes patients may take around the law while going through legal processes.
In this sensitive ethnography, Marie-Andrée Jacob reveals the methods and mindsets of doctors, administrators, gray-sector workers, patients, donors, and sellers in Israel's living kidney transplant bureaus. Matching Organs with Donors describes how suitable matches are identified between donor and recipient using terms borrowed from definitions of kinship. Jacob presents a subtle portrait of the shifting relationships between organ donors/sellers, patients, their brokers, and hospital officials who often accept questionably obtained organs.
Jacob's incisive look at the cultural landscapes of transplantation in Israel has wider implications. Matching Organs with Donors deepens our understanding of the law and management of informed consent, decision-making among hospital professionals, and the shadowy borders between altruism and commerce.
- Éditeur:
- University of Pennsylvania Press
- Sortie:
- Aug 16, 2012
- ISBN:
- 9780812206500
- Format:
- Livre
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Matching Organs with Donors - Marie-Andree Jacob
Matching Organs with Donors
CONTEMPORARY ETHNOGRAPHY
Series Editor
Kirin Narayan
A complete list of books in the series is available from the publisher.
MATCHING ORGANS WITH DONORS
Legality and Kinship in Transplants
Marie-Andrée Jacob
UNIVERSITY OF PENNSYLVANIA PRESS
PHILADELPHIA
Copyright © 2012 University of Pennsylvania Press
All rights reserved. Except for brief quotations used for purposes of review or scholarly citation, none of this book may be reproduced in any form by any means without written permission from the publisher.
Published by
University of Pennsylvania Press
Philadelphia, Pennsylvania 19104-4112
www.upenn.edu/pennpress
Printed in the United States of America on acid-free paper
10 9 8 7 6 5 4 3 2 1
Library of Congress Cataloging-in-Publication Data
ISBN 978-0-8122-4432-8
CONTENTS
Introduction: Matching
Chapter 1. Ethnography Through Transplants and Vice Versa
Chapter 2. Consent Forms, Differences, and Indifference
Chapter 3. Kinship as Template
Chapter 4. Committee-ing Family Donations
Chapter 5. The Evidence of Altruism
Chapter 6. Exits and Promises: Signatures, Loopholes, and Swaps
Conclusion: Kin Relations, Legal Relations, and Transplants
Appendix A: Living Organ Transplant Directive
Appendix B: National Organ Transplant Act
Notes
Bibliography
Index
Acknowledgments
Introduction: Matching
Friends to Death
on the Front Page
In autumn 2005, at HaMagen Hospital, a kidney donor, about thirteen hours after a transplant, died following severe internal bleeding in his stomach. The donor was a thirty-eight-year-old man. His family did not know about the donation; he had not informed them. To explain his absence, he had told members of his family that he was on a trip to Barcelona with his secretary. At the request of the family, his body was taken to a forensic institute for an autopsy: a plastic clip that served to close the blood vessels had slipped after removal of the kidney, causing a leak and massive bleeding.¹ The technique used for removal of the kidney was laparoscopy or keyhole surgery,
less invasive than open surgery; the media mentioned that it is used in 80 percent of all such procedures in the U.S. and has been successful in more than two dozen live donor kidney removals so far this year.
² The leak could also have been caused by an increase in blood pressure that dislodged the clip. The kidney was supposed to have been removed from the donor three weeks before the donation, but the operation had been postponed because the donor’s blood pressure had suddenly fallen.
Although I eventually learned about this tragic case from the reflections of people in the HaMagen hospital transplant unit, I became aware of it mostly through newspaper articles, just like everyone else. The media coverage questioned whether this transplant had been a donation or a sale. The front page article from the Ma’ariv newspaper was titled Friends to Death.
By putting quotation marks around the words healthy
and altruistic,
another article played not only on sensationalism, but on ambivalence about whether the donor was healthy enough to donate to begin with, and whether the donation was genuinely altruistic or a sale.³ The profound confusion about the legality or illegality of purchasing and selling kidneys was highlighted, as this excerpt shows:
police said Wednesday that they would not open a criminal inquiry into whether a man who died Monday after a kidney operation in … hospital had actually sold, rather than donated this organ.
Police said that even if it turned out that the man had sold his kidney, it had no authority to investigate the matter, since it is not illegal in Israel to sell one of the body’s organs.⁴
Things don’t last long in Israel,
a transplant coordinator told me. The day after the death of this donor, when I visited the HaMagen pretransplant unit I saw potential donors sitting in the waiting room before their meetings with doctors, as usual. A group of four people in their thirties—a patient with his sister, and the patient’s would-be-donor with her husband—were talking and commenting about the coverage of the story. They did not seem to find it important or troubling, and they did not particularly question why they had come here today or what might happen to them. A few days after the incident, when I still felt shaken by it, I realized that things seemed to have gotten back to routine in the hospital and that it was business as usual. Noa, an intermediary who was making a business of matching unrelated donors and patients, and who had seemed so distressed by the case, was busy and had several meetings with clients that week.
At that moment, and often during my time in the organ transplant milieu, I felt as though I was lagging behind the people I was hanging out with. I was not in synch with them, delayed.⁵ That I wrote reports, papers, and this book several months after I gathered the data that inform it gives me some semblance of distance,
but it also confers a feeling of being after, or behind the field.
In telling this opening story as I have, I do not wish to use distance to make a freak-show,
to use Kitty Calavita’s expression,⁶ out of the story of the dead donor. This book is not a look-at-the-organ-trade-freak-show type of investigation. The above is an astounding story, true, because it is both exceptional and emblematic of the field I describe in Matching, but the story is not as important as the structural, legal, bureaucratic, economic, and kinship patterns that surrounded and allowed these events to happen relatively smoothly. And yet Noa was worrying the morning after she told me about the donor’s death: Perhaps now they will stop transplants, I don’t know … I may try and focus on transplant outside of Israel. … In China, they have death penalty … why should I be bothered with what is going on in China … perhaps there. Here with donors, it is becoming too complicated.
Noa’s partner Michal was also increasingly concerned about their business. There are no donors, she said. When I asked her why she thought things slowed down, she told me in a tone of confession: I think it is black magic. You won’t believe me, but I believe in it. It is, you know, ‘charming’ … that’s my feeling.
When pressed to explain, she said: It’s jealousy … yes, the competitors. We are the biggest in the country, nine donors in four months, it’s a lot. We have donors, we respect people, and there are people who are jealous.
Perhaps things don’t last long in Israel,
but the atmosphere was in fact beginning to change in the transplant unit. A couple of weeks after the dead donor incident, I started hearing more and more disheartened comments by people working in the unit. The transplant coordinator lamented that there are no cases, there is nothing.
Others simply said that today everyone goes abroad.
Others, including the head of the unit, told me they do not think the system as it exists now is sustainable. When I told a senior surgeon that according to my findings living transplants were on the rise, he replied: Yes, but with time, it will go down. You cannot do medicine if it is not moral.
Matching
This book tells the tale of the activities of matchmaking persons for organ transplant purposes in Israel. It interprets the legalistic, technocratic, and bureaucratic dimensions of this matching process in terms of biological compatibility, but also in terms of social compatibility. Matching,
as we will see, is directly linked to relatedness in kinship terms, which itself is predicated on a complex nexus of acceptability, legitimacy, proximity, and arm’s length negotiations. The book uses the adjudication of matching donors and recipients in order to travel back and forth between scenarios of the legal and the illegal, and to question the significance of the thin, at times invisible, line that allegedly divides the two.
Deeply intrigued by the conditions under which contemporary living organ transplants often take place, I wrote this book to show various aspects of creativity in a field where people usually see pure interest or pure altruism, desperate need, market forces, and bureaucracy. The book thus documents the field not by showing what is right or wrong, or true or false, in it, but by evoking the creative, inventive toiling of some its actors.
In order to show the particularity of the Israeli case, the book makes use of vignettes drawn from ethnographic fieldwork conducted in the United States. Not a comparative study per se, the book makes use of comparison at those junctures where Israeli and American practices have explicitly modeled one other, or where a specific aesthetic or normative dissimilarity resonated to broader theoretical and policy debates in transplants.⁷
The following chapters detail living kidney transplant arrangements and decision-making processes from within, and present the tensions inherent in the daily activities of professionals, patients, and people who operate in the transplantation black market. Through tales of the diverse bureaucratic routes and detours transplants follow, this book also directly engages dominant understandings of kinship, legality, and agency embodied in the documentation of consent to transplant. Again, the purpose is not to classify current practices as ethically right or wrong. Neither a policy-oriented text on the need to increase procurement, nor a condemnation of the commercialization of transplantations, this book mobilizes ethnographic data to tackle the how questions of kidney transplants: the how of consent forms and other transplant-related paperwork, of committees and decision-makers’ authority, of following and deflecting regulatory agency, and broadly, of relations entailed and circumvented by transplants. I take up the challenge to carefully analyze the anxieties and concerns of those involved, and as a response offer a thorny and somewhat counterintuitive rendering of consent, law, bureaucracy, and kinship, via the case of transplants.
The practice of transplantation forces impenetrable dilemmas upon the nurses, surgeons, bureaucrats, and other professionals and agents who work in the field. The hard questions
have stimulated some but worn out others in the field. A sense of exhaustion is thus a salient artifact of the contemporary field of transplants. Faced with unfathomable moral choices, many transplant professionals have developed ways to set some dilemmas aside in order to cope with the weightiness of the field. Several technologies support the milieu by appearing to provide some solutions. I examine some of these technologies, such as consent forms, idioms of kinship, rhetorics of multidisciplinarity, committee apparatus and other hearings, and more recently the concept and practice of swapping. These rescuing technologies are understandably highly seductive, as they literally allow people to use proxies for certain questions, and to leave behind the exhaustion that comes with the handiwork of dealing with moral puzzles daily. But of course, as some questions are put in the background, others emerge and come to the foreground.
Czech novelist Milan Kundera writes that innocence has a sourire sanglant,
a cruel smile.⁸ An extraordinary tension will I hope be detected throughout Matching: although virtually everyone I met and observed during this research was acting and speaking in good faith—in other words, was innocent—it appears that in transplants such innocence is nevertheless linked to much injury and suffering. Yet people retain their humanity despite the fact that they are entangled with, witnesses of, or subject to crude market forces.⁹ The injuries, pain, and desperation rampant in the world of transplants are exacerbated by a problematic endemic to contemporary transplant practices: the fact of physical or biological nearness in spite of social distance. This serves as a backdrop to explain why relations and legal patterns of kinship take center stage in this book.
Why Legality and Kinship?
For decades the medical expertise of matching people with compatible body parts—histocompatibility—has flourished as a field of transplant medicine. Social and legal practices stem from this creative activity of matching persons: in fact, while doing the research, observation, reading, and writing that led to this book, my main discovery has been that in transplants, relations of matching, rather than individual persons, were the a priori social units. This is because transplants cannot exist by themselves, as just
the displacement and replacement of material substance, just
the movement of matter from one body to another. In other words, transplants are always to be accompanied by a creative intercession of sorts.¹⁰ In telling the stories of people who match others and are matched by others for transplant purposes, Matching shows how organ transplantation is precisely a place from which we can fruitfully address problems of the contours of relationships more generally. In this sense this book is greatly influenced by anthropologist Jacques T. Godbout, who wrote in Ce qui circule entre nous: donner, rendre, recevoir that organ transplantations were a magnifying glass of social relations.¹¹
While working on Matching I also discovered that in order to unpack the tensions of the transplant field and the growing discomfort caused by the market in organs, it is essential to identify how transplants engage modern conceptions of kinship. This intimate connection is rampant in societies familiar with biomedical technologies, and I still feel it is being overlooked.¹² That is why this book explores this connection in detail. Next of kin
in Hebrew is she’er basar, the literal coming together of the verb lehishaher, to remain,
and the noun basar, meat or flesh.
Soon enough during my fieldwork, encounters with informants and the more or less disembodied regulatory environment kept pulling me out of this rich language on substance as flesh per se, and pushing me into other issues, still very material, but of a more legal and bureaucratic nature. Therefore Matching is less interested in kinship’s flesh and more concerned with how people think and imagine ideas of kinship in daily legal and bureaucratic encounters. While I take on board David Schneider’s now canonical suggestion that anthropologists had presumed the object of biological kinship, and studied it accordingly on the basis of their Eurocentric assumptions, I with other scholars still insist on not seeing kinship as a unified whole: even within the specifics of the United States and Europe, it is complex and unfixed. For example, in this book we will see a form of kinship arrangements that get mobilized for the purpose of reaping the benefits of kinship. In the social sciences literature these arrangements have been termed fictive kinship.
¹³ This means that kinship can evolve as a tool: for example, if the concept of kin may be played with tactically by the welfare state and its bureaucrats as a tool to allocate (or not) benefits,¹⁴ it can surely be maneuvered, in response, by the people who wish to adapt to the state’s definitions of kinship.¹⁵ Kinship can thus have a distinct bureaucratic and legal existence, which is deployed in the context of transplants.
In this sense the book is anchored in a growing body of literature in sociolegal studies and anthropology that is interested in matters of forms,¹⁶ and in seemingly mundane ways of knowing such as paperwork, files, committee proceedings and procedures, and patient records.¹⁷ This stream of scholarship has recognized how unseen,
commonplace activities in modern practices are important to study, precisely because they remain unquestioned and thus implicitly agreed upon. For example, Annelise Riles has discovered that many of the rationales of global financial regulation can be understood not only through the distillation of private and public norms, but through examining financial regulation as a set of institutions, actors, doctrines, ideas and material documents—of knowledge practices.
¹⁸ In my own work, examining the minute craft of actual consent form documents has given me insights into how bureaucracies transact with patients and their kin through the medium of paper forms.¹⁹
But how are the rules governing this medical area tied to and turned into institutional practices and the expansion of bureaucracies? Experiences of legality connote movements and processes in ways that strict law and legitimacy may not. In the following pages legality refers to local actors’ efforts to handle different activities to make them fit the categories of legitimate or illegitimate. Yet experiential legality is a broader concept than strict legalization in the positivist sense, as it includes broader ways people engage with law: how they imagine it. The individuals I met during my fieldwork seemed preoccupied with the task of forming an ethical posture and poise for themselves and others to see. In such circumstances ethical norms often looked handmade on an ad hoc basis rather than preexistent. Decision-making took a form analogous to that of audits, meaning that it indulged in documentary descriptions of itself and repeatedly put on display axioms like informed consent
or the importance to fight conflicts of interests.
Similarly, kinship turned out to be a pattern to mimic in order to satisfy the state’s expectations. Hence this book is particularly interested in describing how legality and ethics, as well as kinship, are shown.²⁰
The various encounters and derived transplant matches described in the following pages are made legitimate by, roughly speaking, the modalities of committee assessments in Israel, and by the paths of consent forms in the United States. In turn, the backbone of these processes is the array of mundane daily activities, rather than the official texts of law: this is the experience of legality referred to in this book, in lieu of positive law. In fact, a point that has implicitly run throughout the ethnographic material of both sites is that sometimes legal differences do not affect the strategic and hazardous character of the encounters of social life. The way practices of local actors are disconnected from positive law makes legal differences from one jurisdiction to another matter very little.
I anticipate that in the next pages we will witness exchanges manqués, unfulfilled exchanges: not only the exchanges that law-and-society scholars and ethnographers would like to see between law
and society,
but also the cross-fertilizations (as types of exchanges) that comparativists thrive on when they make or reflect on legal transplants, pun unintended. This disconnection is all the more startling given that most local actors in the field of transplants—patients, providers, and professionals—are legally literate. These decision-makers form highly ramified and increasingly uniform epistemic communities,
²¹ to use Peter Haas’s expression, characteristic of today’s globalized world. Local actors, professionals and patients, but also donors achieve a high level of sophistication in their understanding of legal frameworks, to the extent that they can effectively distinguish the substance from the letter of the law, detect useful loopholes, and capitalize on them. This complex comprehension of the law is precisely what contributes to the distancing of the practices of local actors from positive law. A concern with comparative analysis generally assumes that law makes a difference in the social sphere, and that hence legal differences make a difference. Matching shows, rather, that in the context of matching activities surrounding organ transplants, practices are not in line with positive law, and that differences among certain jurisdictions matter less than one might have expected or hoped to discover. The standardization, but also creolization and hybridization of knowledge production,
²² are side effects of globalization. Societies are not billiard balls,
but are rather already interpenetrating and interconnected in myriad ways,
²³ and this necessarily affects our comparative methods.
This book can serve as a reminder of the need to rethink textbook comparative approaches in contexts where local
ideas are exchanged between local
actors via the Internet, international conferences, or a global Christian evangelical NGO newsletter, for instance. It poses challenges and new questions for ethnographers, sociolegal studies scholars, and comparativists, and I hope it teases some of them. A traditional comparative analysis of legal distinctions loses some of its purchase here. Instead, Matching reflects about how actors relate to and imagine the law in transplants, at times using relevant points of comparison. Some actors retreat toward sarcasm, indifference, or blunt defiance, while others become fascinated with the formal and aesthetic components of legal requirements. What deserves particular attention is the very creative ways actors go around the law while going through legal processes: this is how legality is experienced. The exchanges are manqués indeed in this sense. In another sense the exchanges succeed: that is, they are often workable, contribute to making hazy transactions work, and convert them into legitimate operations.
What This Study Is, and What It Is Not
I should warn the reader not to expect a primer on the legal, ethical, and cultural frameworks of transplantation.²⁴ This book is not a statement of key points about the field, but rather an account revealing the struggle to get to these points. The cases and stories on which I build do not aim to be representative,
but are only exemplary. In this sense, my work is inspired by Marilyn Strathern’s thoughts on ethnographic method. The lives of the people presented in this book are neither generalized nor generalizable. They are specific lives, within which I encountered general ideas, always in specific forms.²⁵ In this sense Annemarie Mol recently explained that the stories she writes might be highly specific and local, but that this does not mean their significance is local.²⁶ In addition, the influence of the work of Strathern can be discerned in the strategies I use to present my data. As much as possible I have deliberately omitted certain units of analysis. Adam Reed’s reading of Strathern’s work speaks of obviating orienting dichotomies of social analysis such as Individual and Society, Nature and Culture, Domestic and Public.
²⁷ Applied to my case, this means I have been conducting fieldwork and writing this book without using the rehearsed axioms of analysis of the literature of transplants as my points of entry (these dominant understandings are reviewed briefly in Chapter 1). I hope the reader will profit from what the book omits, in order to see new things, or see older things in a new light.
Like other scholars researching issues related to consensus and controversy in modern medicine, I am often asked, by colleagues and friends, what my ethical position
on transplants is. In the next pages I would like to remain very careful, and yield to a non-normative stance about the actions and practices of my informants, for reasons I would like to elaborate here. If at all, my ethical stance echoes that of Don Herzog, in his book Cunning: My goal throughout is to deepen and refine our sense of what’s troubling in this terrain, not to reassure.
²⁸ I take people’s recurrent questions about my ethical position seriously, though, and understand that my decision to stay outside normative debates might be (mis)interpreted as a laissez-faire normative stand on the organ market
debates. Perhaps I can now briefly explain why I wish to stand outside the two-camp
debate (usually the pro- and anti-market, as I show but nuance in Chapter 1). I do hope the book to be a plaidoirie éthique
²⁹ of a sort: an intervention on the creativity of the relevant actors, and ethnographically speaking, about how we as scholars come to write about human beings and their ventures. In other words, I would like Matching to offer resources to think about the lived realities and dilemmas of the field of transplantation, but not to be about my point of view as an adjudicator of these realities. There are hierarchies of worth pervading contemporary organ transplant systems, mainly grounded on ethnoracialization, gender, nationalisms, religion, and class, but also on disability, age, and lifestyle. Some of them appeared in the fieldwork, and they are illustrated in the following pages. But given the nature and goal of this book, I do not see how my own moral pronouncement (positive or negative) on the practices I witnessed is helpful.
There is another, more serious reason for me not to take a normative stance in this book, and it is directly connected to my ethical position
: I think it would be ethically problematic for me to write a militant ethnography about these practices after the fact, given that many of my informants would not have agreed to speak with me, or to let me follow them, had I not been explicit about my intention to suspend moral judgment (or accolade for that matter) about what they do and say, in order to ask other types of questions. In order for me to be able to write this book, a broad range of people have agreed to let me access their world, their work, and their ventures, and I think it is of utmost importance that I respect this agreement. I think this engages the issue of the writing of Matching: it does not take the approach of human rights advocacy reports but has a more diaristic and personal style, while trying to maintain a distance of sort. Another note of caution is that the book focuses on local transactions and does not engage with transnational kidney markets. I applaud the imperative task of tracing the transnational organ routes, a project Nancy Scheper-Hughes has taken up successfully,³⁰ and I also tend to believe, like Lesley Sharp, that it is difficult to be both global and local at once.³¹ Hence the book privileges the microscope over the telescope.
Chapter Overview
In Chapter 1, I make explicit how my own experiences turned field notes into this book, and provide a brief overview of the terrain where I conducted fieldwork in Israel and the United States, as well as of major debates about contemporary transplant practices in the United States and elsewhere.
Informed consent, pointedly described by Shai Lavi as the mechanism by which the law guarantees the medical structuring of the patient’s decision,
³² is a powerful tool of legitimation for the whole enterprise of transplants, and for a
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