Matching Organs with Donors

Legality and Kinship in Transplants

Marie-Andrée Jacob

• Publisher: University of Pennsylvania Press
• Year: 2012
• Print ISBN: 9780812244328, 9780812244328
• eBook ISBN: 9780812206500
• Topic: Social Sciences
• Subtopic: Medical Law
• Index: Social Sciences

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.

CHAPTER 1

Ethnography Through Transplants and Vice Versa

Ethnographic Possibilities and Limits

I met Don Patterson during my second visit to the Southern hospital in the United States. I was told by the staff that there was a potential donor in the wing who had come for a two-day evaluation (“eval”). As I entered the room in which he was sitting, I introduced myself and asked if he would be willing to hear about my research, to see whether he would like to participate. He smiled and immediately interrupted me with “Whatever you say.” I tried, clumsily, to object and to go on with my informed consent script but was rebuffed. “Whatever you say, where do you want me to sign?” Patterson asked. “I am giving a kidney to my sister.” He went on to explain that when his sister became ill and needed a kidney transplant, he and his family decided immediately, together, who would be the first to be tested as a potential donor; and then, if the first was not compatible, who would be second, third, and so on. Patterson’s other sister was selected as the “first candidate to donate, because she does not have work outside the home,” but she was found to be biologically incompatible. In a grave tone that convinced me of the emergency they were all in, Patterson recounted that he called the Southern hospital the same day he heard his sister was not a candidate for donation. He mentioned specifically that the point was not to decide whether to do it but how to do it, “how to get the ball rolling.”

Later in the conversation, he told me about the things they asked him at the transplant bureau: “They want to know if you feel pressure … y’know what I mean, that kinda thing.”

I used the opportunity to ask him whether he felt pressured to donate. “No, it’s family,” he answered conclusively.

I then asked if he knew why the people at Southern were concerned with such pressure, why it interested them. He laughed and told me flippantly, “I really don’t know; you’d have to ask them.”

When I pressed him to tell me his opinion about it, he said, “I guess it’s just customary, it’s not uncomfortable, they want a full description of me, y’know what I mean.”

I moved on to ask him if he was concerned about medical risks. “No, he said, “they say you can live with one kidney, God gave us two, it is for a reason,” and we both laughed.

“Is all the hospital paperwork a burden to your project of donating?” I ventured.

“No, in every hospital you get it; that’s pretty much the bottom line.”

Finally I asked him whether he had thought about the financial consequences of his donation: “No, I’m at the giving end, so it does not cost me. I don’t need to see a financial coordinator.”

Realizing that I basically had gotten it all wrong in planning questions and issues to address, I cut our conversation short and left, but before I did I told Patterson how admirable I thought his gesture was.

“Pff . . .” he responded. “No, that’s just family.”

I insisted. He disagreed, again: “Pff … it’s family. Blood is thicker than water, ya know, blood is thicker than water.”

Not a successful meeting, I thought. My memorable, somewhat gauche interview of Patterson demonstrates how researchers landing in a site can be wrong about just about everything or express interest in issues their subjects are not interested in, to say the least. Simply put, one of the things ethnography is most useful for is to make the researcher recognize the many mismatches between academic agendas and the “world out there,” and better “see” issues from the perspective of local actors. Although I am not arguing that academic pursuits are disconnected from the “real world,” in the next pages I tease out the questions of when, how, to whom, and for what reasons certain themes have taken the foreground or have remained tacit in literature on the regulation of transplants.

I wrote this book hoping to add meaning to a number of concerns and tensions shared among bureaucrats, health care providers, and patients that I met during my fieldwork in two “organ transplant bureaus,” HaMagen and Southern, in urban centers in Israel and the United States respectively. These concerns are my artifacts, which Annelise Riles describes as the fruits “of the ethnographic effort of working through one’s theoretical concerns” and of “the ethnographic apprehension of, or empathy for, other’s analytical concerns.”¹ Artifacts can be objects, interests, and sets of interests that people have; this growing body includes knowledge practices like audit, legal theory, laboratory protocols, and banking.² In addition, artifacts are not just descriptive facts. As Alain Pottage points out, they can also be made of norms, for example, regulations, internal directives, or ethical codes of conduct.³ The other side of this coin is that norms have a very physical presence, and this book attends to the fact that they occupy a space⁴ and have a material, almost organic, quality as well an intellectual one. Taking my cue from Hirokazu Miyazaki, I refer to these artifacts in the past tense to remind the reader of my own retrospective voice, and of the unavoidable, continuous change in the conditions of the people and objects I observe.⁵

During fieldwork, I often felt scattered and dispersed, without a core physical focus. I gathered much of my information while physically on site, although crucial information was often left on the voice mail of my cell phone, or e-mailed to me. I spent a considerable amount of time in restaurants and cafés, because that is where I met people wishing to have a quiet chat out of the view of hospital carers and administrators, and of those working, to use their terms, “behind” the system. Much of the information gathered was in the form of documents, posters, clippings, and videotapes that were handed to me. Veena Das summarizes well what I discovered: in the context of studying the production of medical knowledge and care, researchers “cannot assume that the social relations between participants can provide a picture on which the relations between the dispersed elements … can be seen.”⁶ Of course, only some relations involve face-to-face interactions (for example, doctor-patient, researcher-subject), and many “other relations are explicitly modeled on norms carved within the disciplinary domains of law or bioethics,”⁷ which forbid, for instance, direct interactions between unrelated living donors and recipients, interactions between ethnographers and certain subjects, and particular objects like medical records, statistics, or waiting lists. The willingness of bureaucrats, jurists, and health care providers to grant me experiential on-the-ground access was a crucial factor that should not be taken for granted: ethnographies of bureaucracies present unique problems of access, which say something about the boundaries of the methodology of ethnography. As has been pointed out in recent years, formalized ethical and legal frameworks of research governance, especially rules about informed consent to research, can pose challenges to social science research,⁸ and particularly to ethnographic practices.⁹ These restrictions not only impinge on ethnography, but, I argue, may also trigger more possibilities for it. Being allowed or refused entry, being blocked or slowed down, being expected to write things in a certain format, can set new things in motion, open up theoretical possibilities, force self-reflexivity and creativity in textbook, good-practice methodology, and especially discipline the ethnographer so that she learns to behave like some of her subjects. One sort of analytical parallel that can be drawn in this specific context is that between the practices of the ethnographer and those of the subjects she studies.

My fieldwork quickly became an exercise in trying to locate “gatekeepers, key informants and expert witnesses”¹⁰ who could not only give me access to data, but comment analytically on the topic in question, and on my project. The terms of my informants, as will be shown explicitly, can often be substituted for critique. Whereas the ethnographer is ordinarily expected to present critique as a surprise, after laying down the data, in my case, so-called data often became a methodological tool, and in turn, some methodological issues became critical data.¹¹ Among other things, my fieldwork revealed how the concerns of those I call my “research subjects” resemble my own concerns and those of my legal ethnographer colleagues. In other words, the “research subjects” I observed already deployed a critical analysis of the allegedly “raw” data that they provided me.

The following example shows the limits of such ethnographic research on legal and bureaucratic terrains. At the Southern hospital, in the United States, a procedure of particular interest to me was the initial screening of patient candidates, which determines whether patients will actually get into Southern’s bureaucracy, to be examined and screened further. Once a week, “tracking meetings” were convened by the hospital’s nurse manager in a secretarial office. In tracking meetings, staff members did an initial screening; that is, they selected who would be “invited to come for eval.” Since I conducted my research at Southern itself, I was not able to have access to those who did not make it in the door: those who were rejected on the basis of their personal paper files at these tracking meetings never got the opportunity to come to Southern in person. This of course created a bias in my sample of patients—my informants can only be those who make it in the door. Given that ethnoracial inequities are documented to be rampant in access to organ donation in the United States,¹² this incomplete access to data is both telling and unfortunate. In addition, my research protocol and the laws that overlooked it further prevented access to certain portions of the work of Southern as an organization. The Health Insurance Portability and Accountability Act¹³ forbids a researcher to listen to personal details of individuals who have not signed the proper waiver of information. Because the individuals discussed in tracking meetings existed solely in paper form for Southern, and because the personal details discussed in these meetings are of people whom I could not have yet met nor obtained consent from, I was not allowed to attend. Consequently, for bureaucratic and research ethics reasons, the complete transplant screening process remained out of reach of the ethnographer. Ethnography, as an approach, implies on-site, direct observation of practices, and here, according to U.S. positive norms, it simply could not happen. Of course, participants could relate to me in hindsight what occurred during the meetings—as some of the local actors did in Israel, as will be seen—but that is not the point. The critical point is that the “tracking meeting,” for example, is a specific site—though by no means unique—where the combination of ethnographic methods and research ethics regulations produce a surprising result: it actually prevents gathering important information about issues that are often crucial to research ethics, such as access to treatment or research. The example sheds light on several features of the U.S. hospital as a research site: the relation between the substance and the letter of the law, and the high level of legalism and proceduralism, as well as a defensive view of research. The most arresting insight to be gained, however, is what the “tracking meeting” anecdote says about ethnography of bureaucracies in general, and about informed consent to ethnography.

The setting of a bureaucracy, a hospital bureaucracy more particularly, is populated with people who know how to handle scrupulous legalistic and ethical requirements, and who are familiar with the procedural checkpoints, checks and balances, and other rituals that aim at keeping the purported lawbreakers out. Modern bureaucracies also master an expertise in crafting an attractive self-image for outsiders’ consumption. For instance, hospitals generate and distribute generously to patients—and researchers—panoplies of videos, sleek magazines produced by pharmaceutical companies, patient flowcharts, and of course, the exemplary instruments of self-description: consent forms.¹⁴ Without wanting to endorse ethnography as positivistic, I think, like Riles, that in order to understand bureaucratic settings that possess such skills, the ethnographic method of study is particularly revealing and relevant.¹⁵

Interestingly, the hospital is also a place where people always rush. Time in a hospital does not allow for interruptions to let the researcher enter rooms, obstruct the flow of things, introduce herself, do her legal talk, distribute her consent paperwork, and ask if there are questions. “People are busy here,” I was told. American and Israeli hospitals were very similar in this respect. And this must be kept in mind when considering how bureaucracies and hospitals operate, and how to research them. In addition, the actual physical layout of offices could prevent me from “seeing everything” and often left me with the sense that there was always something else, something more. In an office, an abruptly slammed door may excite the imagination of the ethnographer who is just about to walk along that corridor, but it does not provide data, except about itself: a door got slammed. On the first day of my fieldwork at HaMagen, I wondered what in the world a nurse could be doing behind the slammed door, and it intrigued me greatly. I imagined covert plots and phone calls related to organ trafficking, until I discovered that she was a heavy smoker who just did not want to be reprimanded for having a cigarette in the hospital!

Other epistemological limits to the ethnography of bureaucracy consistently influenced my work. When I noticed that a sheet of paper was being moved in space, from hand to hand, and then classified and put in a filing cabinet, a lot went on, true, but a lot also was missing. Mundane or not, many of the daily, small, consecutive bureaucratic acts could not be captured or semantically understood ethnographically, precisely because they were immediately followed by another act: answering the phone, classifying another piece of paper, opening and closing drawers or computer files.

Yet another challenge is that highly mundane activities may deploy a complex lexicon (of medical-legal-bureaucratic terms) and reasoning that are not transparent to outsiders and cannot be deciphered by ethnography alone. For example, an observer finds it difficult to make sense of how paperwork is handled and data are entered in a computer, unless the informant explains what she does as she does it, that is, plays the role of an ethnographer by describing herself as well as others. By doing this, the informant would contribute material to the site in providing further data. Yet at the same time, she would alter the site, in a “Hawthorne” way,¹⁶ by altering her behavior because of the ethnographer’s presence: she would be doing something, self-describing herself, explaining what she touches and says, that she presumably would not do in the absence of the ethnographer. But here is the twist. More and more contemporary forms of bureaucracy actually involve self-descriptions as an essential activity. In other words, self-description can be “built into” the bureaucratic practice, and hence becomes less an added alteration performed for the ethnographer, and more an essential component of bureaucracy.

This surprising realization came to me in the United States during a couple of hours I spent with Nicole, a transplant coordinator. As she was performing her activities, Nicole kept telling me what she was doing, and why. In a nearly identical yet parallel way, she was also recording, for herself, not for me, most of her activities in her computer database. What Nicole described to me, and what she described for herself, were not exactly the same, though. They were two different sets of practices. For example, she wrote a note to herself on the computer that she spoke with a patient about getting the “evals” done, and then told me about ...

Table of contents

• Cover
• Title
• Copyright
• 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