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May 14, 1998
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For Sidney Mintz
The Global Economy and Brute Life
In a recent issue of Atlantic Monthly (January 1998 ) George Soros , best known as a world-class billionaire financier, analyzed some of the deficiencies of the global capitalist economy. It is a fairly elementary exercise, but coming from a person in his position, one tends to sit up and take notice. The benefits of world capitalism, Mr. Soros notes , are unevenly distributed. Capital is in a better position than labor. And, surely it is better to be situated at the center of the global economy than at the peripheries. Given the inherent instability of the global financial system, busts will inevitably follow booms, like night the day, and capital tends to return to its centers leaving the minor players in faraway places high and dry. Meanwhile, the rapid growth of global monopolies have compromised the authority of states and weakened their regulatory functions.
But what bothers Mr. Soros most is the erosion of social values and social cohesion in the face of the increasing dominance of anti-social market values. Not that markets are to be blamed, of course. By their very nature markets are indiscriminate, promiscuous and inclined to reduce everything, including human beings, their labor and even their reproductive capacity to the status of commodities, to things that can be bought, sold, traded, and stolen. So, while, according to Mr. Soros, a Market Economy is generally a good thing, we cannot live by markets alone. "Open" and democratic societies require strong social institutions to serve such vital goals as social justice, political freedom, bodily integrity and other human rights. The real dilemma, as Mr. Soros sees it, is one of uneven development. The evolution of the global market has outstripped the development of a mediating global society.
Indeed, amidst the neo-liberal readjustments of virtually all contemporary societies, North and South, we are experiencing today a rapid depletion, an ‘emptying out’ even, of the traditional modernist, humanist, and pastoral ideologies and practices. But meanwhile, new mediations between capital and work, between bodies and the state, belonging and extra-territoriality, and even between , social exclusion and medical- technological inclusion are taking shape. So, rather than a conventional story of the sad decline of humanistic social values and social relations , our discussion is tethered to a frank recognition that the conventional grounds on which those modernist values and practices were based have shifted beyond recognition.
Nowhere, perhaps, are these processes more transparent than in the rapid dissemination in the past decade of organ transplantation technologies and practices which under the ideal conditions of an "open", neo-liberal , global Market Economy has allowed for an unprecedented movement of , among other "things", mortally sick bodies moving in one direction and detached "healthy" organs (transported by commercial airlines in ordinary plastic beer coolers stored in the overhead luggage compartment of the economy section ) in another direction, creating a bizarre "kula ring" of international trade. This essay critically explores -- with particular reference to recent organ transplantation "developments" in Brazil, South Africa, India, the United States, and China -- the new forms of bio-economics and bio-sociality (Rabinow 1996) that are now emerging in the wake of the internationalization of this immensely powerful , if crude, medical technology.
What is needed, then, is something akin to Donna Haraway’s (1985 ) radical "manifesto" for the cyborg bodies and cyborg selves that we have, in fact, already become through the appearance of these strange markets, excess capital, advanced bio-technology, ‘surplus bodies’ and human ‘spare parts’. Together, these have allowed for a spectacularly lucrative world trade in organ transplantation which promises to certain, select individuals of reasonable economic "means" living almost anywhere in the world -- from the Kalahari Desert in Botswana to the deserts of the Arab Emirate of Oman -- a "miraculous" extension in what Giorgio Agamben (1998) refers to as "brute" or "bare" life, the elementary form of biological "species life". This, in turn, is made possible by the internal and domestic reorganization of neo-liberal , democratic states and their successful capture of the "cadaver" now redefined as the "state’s body" and the concomitant politicization of death. By this we mean the increasing capacity of the post-transplantation State to define and determine the hour of death and to claim, unashamedly, the ‘first rights’ ( and first rites ) to the disposal of the body’s parts.
Until very recently, only highly deviant authoritarian and police states -- Nazi Germany, Argentina in the late 1970s, Brazil in the 1960s and 1970s, and South Africa under apartheid -- had assumed this capacity in the 20th century, this final word, as it were, over brute life, politicized death, and the creation and maintenance of a surplus population of "living dead", whether Black industrial workers kept in barbaric worker hostels in apartheid South Africa, (see Ramphele 1994), the "disappeared" in Argentina, or those walking cadavers kept hostage in Nazi concentration camps. The "democratization" of practices bearing at least some family resemblances to these (i.e., the "living dead" maintained in intensive care units for the purpose of organ retrieval ) in neo-liberal states has generally occurred in the absence of public outrage or resistance, with the possible exception of public unrest following democratic Brazil’ passage of its authoritarian law of "presumed consent" to organ donation in 1997, which we shall discuss below.
In the face of this ultimate, late modern dilemma -- this "end of the body" as we see it -- the task of anthropology is relatively clear and straight forward: the recovery of our discipline’s unrealized radical epistemological promise and a commitment to the "primacy of the ethical" (Scheper-Hughes 1994) while daring to risk practical , even political, involvement in the dangerous topic 1 under consideration. The need to define new ethical standards for the international practice of organ donation -- especially in light of the abuses that undermine the bodily integrity of socially disadvantaged members of society and the public trust that is necessary for voluntary organ donation to continue, brought together a small international task force. The "Bellagio Task Force on Transplantation, Bodily Integrity, and the International Traffic in Organs", lead by social historian, David Rothman, is comprised of a dozen international transplant surgeons, organ procurement specialists, human rights activists, and a medical anthropologist (myself, NS-H) meeting in 1995 and again in 1996 in the Rockerfeller Conference Center in Bellagio, Italy. The task force is examining the ethical, social, and medical ramifications of these problems and is considering various strategies to impact them, including the creation of an international human rights body
-- a "Human Organs Watch" , if you like -- to monitor reports of any gross violations in the procurement and distribution of human organs in transplant surgery. An initial report of the Task Force was published in Transplantation Proceedings (Rothman et al., 1997). At the 1996 meeting, I was "delegated" by the Task Force to launch a very exploratory, ethnographic, comparative study of the social and economic context of organ transplantation, including the global and domestic traffic in organs.
The field research on which this discussion is based, therefore, derives from this "mission". It represents the preliminary findings from the early stages of the collaborative "Selling Life" project. My Berkeley colleague, Lawrence Cohen, is currently conducting research in India on the emerging "black market" in human organs resulting from new laws prohibiting the previously legal trade in live kidney donors. In my on-going research in Brazil and South Africa I am being assisted by a small "team" of local researchers and field assistants (see acknowledgments). At home in Berkeley, I am collaborating with Joao Biehl who has assisted both in the analysis of the emerging Brazilian data and in thinking through many of the arguments made in this paper.
The focus on the "commodification" of the body and body parts within the new global economy owes a particular debt to the writings and thought of Sidney Mintz, particularly his magisterial book, Sweetness and Power. This article is offered as a "transplanted" surrogate for the 1996 Sidney Mintz lecture which I was extremely honored to present at Johns Hopkins University 2 .
The Organs Ring and The Commodified Body
Indeed, as Arjun Appadurai has noted (1986) there is nothing fixed, stable, or sacrosanct about the 'commodity candidacy' of things. Nowhere is this more dramatically illustrated than in the "booming" global and domestic markets in human organs and tissues from both living and deceased donors to supply the transplant industry, a medical business driven by the simple market calculus of "supply and demand". The very idea of organ 'scarcity' is what Ivan Illich would call an artificially created need, invented by transplant technicians and dangled before the eyes of an ever expanding sick, aging, and dying population. This market is part of an impressive development and refinement of transplant technologies. These developments were facilitated historically through the medical definition of irreversible coma ( at the end of the 1950s) and the new legal status of "brain death" ( at the end of the 1960s) in which, as Giorgio Agamben (1998:163) notes, death became an epiphenomenon of transplant technologies. These transformations reveal the extent to which the sovereign power of postmodern states, both "democratic" and authoritarian, is operationalized through the life sciences and medical practices. These apparatuses, sciences, and technologies are globally integrated in markets which, in turn, increasingly reconfigure local states and local "cultures".
Lawrence Cohen, for example, who has worked in rural towns in various regions of India, from north to south, now reports that in a very brief period of time the idea of trading "a kidney for a dowry" has caught on and become one strategy for poor parents desperate to arrange a comfortable marriage for an "extra" daughter. In other words, a spare kidney for a spare daughter. Cohen notes that ten years ago when villagers and townspeople first heard through newspaper reports of kidney sales occurring in the cities of Bombay and Madras they responded with predictable alarm and revulsion. Today, some of these same villagers speak matter of factly about just when in the course of a family cycle it might be necessary to sell a "spare" organ. Some village parents say they can no longer complain about the fate of a dowry-less daughter. "Haven't you got a spare kidney?", one or another unsympathetic neighbor is likely to respond.
And in rural Brazil , over a similarly short period and in response to demands to ‘donate’ a kidney to a family member , working class people have begun to view their bodies and body parts as comprised on unessential redundancies. "Nanci, " I was challenged by a forty year old woman who had ‘given’ a kidney (for a small compensation) to a distant relation. "Wouldn’t you feel compelled to give an organ of which you yourself had two and the other ‘fellow’ had none?" I pointed out, rather lamely, that the Good Lord had given us two of quite a few organs and I hated to think of myself as selfish ( egoista ) for wanting to hang on to as many of the pairs as I could! It was not so long ago -- 1986, in fact -- and in this same community when I had been invited to accompany a small procession to the graveyard where we ceremoniously buried a ‘fellow’s’ amputated foot! The folk Catholic ideology of the sacredness of the body -- and the integrity of its component parts-- was still then the commanding ethos. And though I felt a bit silly giving that gangrenous foot the benefit of a decade of the rosary as a ‘send off’, Rosalva’s reconceptualization in the late 1990s of her body as a mere reservoir of spare parts struck me as a troublesome turn’ of events.
The particular and well documented case of organ selling and , more recently , of organ stealing ( see New York Times, May 12, 1998) in Indian villages is but one small, if well documented, link in a 'booming' world market in organs and human tissues (not to mention blood, semen, ova , and babies) that links east and west, north and south. Over the past 30 years, organ transplantation has been transformed from a rare and experimental procedure performed in a few advanced medical centers in the first world to a fairly common therapeutic procedure carried out in hospitals and clinics, not all of them certified and legitimate, throughout the world. Kidney transplantation, which is the most universal form of organ transplant, is now conducted in the US, in most European and Asian countries, in several South American and Middle Eastern countries, and in a few African counties ( in North Africa and South Africa). Survival rates for kidney transplant have increased markedly over the past decade, although these still vary by country and by quality and type of organ (living or cadaveric).
Until recently the "best" medical option for kidney transplantation was using a genetically closely related living donor (Fischel 1991). Today, however, morbidity rates from infection and hepatitis are higher in countries like Brazil, India, and China , which still rely heavily on living kidney donors than in the U.S., Canada, and the countries of Western Europe which rely more on cadaveric donation. But within some poorer countries to the South, like Brazil, survival rates for kidney transplant are still better with a matched living donor than with an 'anonymous' cadaveric organ which stands a good chance of not having been adequately tested or screened.
Organ transplantation now takes place in a trans-national space with both donors and recipients following the paths of capital and technology in the global economy. In general, the movement of donor organs follows modern routes of capital: from South to North, from third world to first world, from poor to rich bodies, from black and brown to white bodies, from young to old bodies, productive to less productive, and female to male bodies. Residents of the Gulf States (Kuwait, Saudi Arabia, Oman, United Arab Emirates) travel primarily to India to obtain kidneys, while residents of Taiwan, Hong Kong, Korea and Singapore travel to mainland China for transplant surgery, allegedly with organs removed from executed prisoners. Japanese patients travel to North America as well as to Taiwan and Singapore for organs retrieved from brain dead donors, a definition of death only very recently and reluctantly accepted in Japan.
And, a great many people -- and by no means are all of them wealthy -- have shown their willingness to travel great distances to secure a transplant using both legal and illegal channels. This is so even when the survival rates in some of the more commercialized contexts is quite poor. Between 1983-1988, 131 patients from just three renal units in the United Arab Emirates and Oman traveled to Bombay, India where they purchased, through local brokers, kidneys from living donors. The donors, from urban shantytowns outside Bombay, were compensated between $2,000 and $3,000 for a kidney. News of the "organs bazaars" operating in the slums of Bombay, Calcutta and Madras appeared in Indian weeklies and in special reports by ABC and the BBC. Meanwhile, prestigious medical journals, (including The Lancet and Transplant Proceedings ) published dozens of articles analyzing the medical risks and poor outcomes resulting from transplantation using "poor quality" kidneys from medically compromised "donors" 3
A medically invented, artificial scarcity in human organs for transplantation has generated a kind of panic and a desperate international search them and for new surgical possibilities. Bearing many similarities to the international market in adoption, those looking for transplant organs are so single minded in their quest that they are sometimes willing to put aside questions about how the organ [or ‘the baby’ in the case of adoption] was obtained. In both instances the language of "gifts" , "donations", " heroic rescues" and "saving lives" masks the extent to which ethically dubious and even illegal practices are used to obtain the desired " scarce" commodity, infant or kidney, for which foreigners (or "better off" nationals) are willing to pay what to ordinary people seems a king’s ransom. With desperation built in on both sides of the equation -- deathly ill "buyers" and desperately needy "sellers" -- once seemingly "timeless" religious beliefs in the sanctity of the body and proscriptions against body mutilation have collapsed over night in some parts of the third world under the weight of these new market's demands. These new demands are driven by the rapid dissemination of the medical technology and expertise of transplant surgery and a new global social imaginary about the possibilities of bodily rejuvenation and 'repair' through organ replacement.
The gap between supply and demand that drives the new global trade in organs is exacerbated by religious sanctions and/or cultural inhibitions with respect to "brain death" and the proper handling of the dead body. Prohibitions in one country or region can stimulate an "organs market" in more secular or culturally pluralistic neighboring countries or regions. Meanwhile, the " scarcity " of organs produced in the wake of centralized "waiting lists" for transplantation has provided many incentives to physicians, hospital administrators, government officials, and blatantly commercial intermediaries to engage in ethically questionable tactics for obtaining organs. For example, heart transplantation is hardly performed at all in Japan due to deep reservations about the social definition of brain death, while most kidney transplants are gotten with living, related donors (see Lock 1996, 1997; Ohnuki-Tierney 1994).
For many years desperate Japanese nationals have resorted to intermediaries with connections to the underworld of organized crime ( the so called "body mafia") to locate donor hearts or (when lacking related donors), paid unrelated kidney donors in other countries, including the United States. According to Lock (personal communication, 1997) who is engaged in a comparative study of transplant surgery in Japan and Canada (1996, 1997), a ring of Japanese yakuza gangsters, working on behalf of desperate Japanese transplant candidates through connections at a major medical center in Boston was uncovered by journalists and broken up by police there a decade ago. And, until recently, Japanese kidney patients also traveled to Taiwan and Singapore to purchase organs obtained (without consent) from executed prisoners, until this practice was roundly condemned by the World Medical Association in 1994 and was prohibited by new regulations.
The ban on the use of organs from executed prisoners in one part of "capitalist" Asia, opened up the possibilities for a similar practice in another part of "communist" Asia. The demand for hard currency by strapped governments recognizes no fixed ideological or political boundaries. Recently, the New York Times (February 24, 1998) reported on an FBI operation which led to the arrest of two Chinese citizens charged with conspiring to sell human organs of executed prisoners. The undercover "sting" operation was set up by the human rights activist, Harry Wu , who has been alerting the world since the 1980s to this alleged, covert practice in China . This particular case is still pending investigations, but its outcome may determine once and for the veracity of Harry Wu ( and other human right activists) contested claims about the organs trade in China today , which we will discuss at greater length below.
Despite the publicity and attention to the more spectacular international traffic in human organs , an equally important though far less explored dimension of the organs trade is domestic, following the usual routes of social and economic cleavages and obeying domestic rules of class, race, gender, and geography. Dr. X, an elderly Brazilian surgeon and nephrologist, admitted during an interview in Sao Paulo in 1997 that "the commerce in organs has always been a reality in Brazil and among and between Brazilians.
" Those who suffer most, he said, are the usual ‘nobodies’ ", mostly poor and uneducated, who are tricked into "donation" through illegal and unethical bodily transactions. The elderly doctor cited a transplantation scandal that occurred in Brazil in the late 1980s one of several such cases exposed by local journalists and human rights activists. This particular one concerned a young accident victim, a mere girl of 12 years, from the interior town of Taubate, who while undergoing surgery on her broken leg, had a "spare" kidney removed by unscrupulous surgeons. Following a complain lodged by her family who noticed a scar where none should have been, the local Public Defender began an investigation but it was interrupted by the Federal Police. Consequently, the Federal Board of Medicine was "compelled" to pass a verdict of "not guilty" due to lack of evidence.
But the poor and socially disadvantaged populations of Brazil and elsewhere in the world have not remained silent in the face of these threats and assaults to their health and to their bodily integrity, security, and dignity. For many years these marginal populations, living in urban shantytowns and hillside favelas, possessing little or no "symbolic capital" have announced their fears and their outrage through the idiom of seemingly "wild" rumors and urban legends , to be discussed below, that warn of the existence and the dangerous proximity of markets in bodies and body parts ( Scheper-Hughes 1996). The circulation of the rumors and "urban legends" of organ theft have produced in their wake a climate of hostile "civil" resistance toward even legitimate and altruistic organ donation and organ transplantation in some countries to the South (such as Brazil and Argentina) where voluntary donations began to drop precipitously in the 1980s. Medical associations and governments have tried, without success, to correct the "disinformation" being disseminated by the persistent organ stealing rumors.
And, in a curious reversal, these ‘ illiterate’ rumors originating in the periphery have migrated to the comfortable and affluent "core", the comfortable middle class communities of the U.S. Despite the appointment of a full-time USIA disinformtion specialist, Todd Leventhal (see USIA 1994) who has lead a long and expensive U.S. government campaign to kill the "body parts" rumor, as recently as the late fall of 1997 a variant of the organ stealing rumor carrying dire warnings about the existence of seductive female ( or, less often, male) medical "agents" involved in the body parts trade was circulated among thousands of Americans via an electronic mail "chain letter" . One strand of the chain was passed among a network of progressive academics, and to my amusement I was one of the recipients. Thre warning was followed a few days later by an apology stating that the story may have been "just a rumor".
Indeed, it would seem from this that a great many people in the world, both North and South, are uneasy. Something seems amiss or profoundly wrong about the nature of the beast that medical technology has released in the name of transplant surgery. But why now, why so many years later? Has transplant surgery opened a Pandora’s Box that has resulted in a long overdue, popular backlash? Or, is there something new about the current organization of transplant surgery that has turned a once proud and altruistic moment in medical history into something unseemly and grotesque?
Dr.B., a heart transplant surgeon in Cape Town, South Africa whom I interviewed in February 1998, said he has become very "disheartened" about his profession’s recent decline in prestige, trust, and value : " Organ transplantation has moved from an era back in 1967 when the atmosphere and public attitude was very different ...You know, people then still spoke about organ donation as that fantastic gift. Our first organ donor, Denise Dawer, and her family, were very much hallowed here. They were given a lot of credit for what they did and their photos are displayed in our hospital’s new Transplant Museum. Society at that stage was still very positive. Now that there have been hundreds of thousands of donors throughout the world , the idea of organ donation has lost some of its luster. And, donor’s families throughout the world have been put under a lot more pressure. And there have been some incidents that were unfortunate... So we’ve begun to all of a sudden to experience a sea of backlash . In Europe there has been a strong backlash because of the state’s demand, the moral requirement even , to donate. Europeans have generally had a good social conscience, they tend to believe in the better good of society, and so up until now they supported organ transplantation as a social good. But , now, suddenly objections are beginning to be raised. The Lutheran Church in Germany, for example, has started to question the idea of brain death, long after it had been generally accepted there. And so we have seen a drop of about 20% in organ donations in Europe, but especially in Germany. This is entirely new. So we are experiencing a real backlash, and what happens in Germany, unfortunately, has repercussions for South Africa".
The New Cannibalism: Artificial Needs and Invented Scarcities
The keywords in organ transplantation that require at the outset a radical deconstruction are "scarcity" , "need", "donation", "life", "death " , " supply," and "demand," terms which hide their medical, economic, and technological mediations.
The idea of organ 'scarcity' , for example, is an unexamined premise in the vast literature, ideology, rationale, and practice of transplant surgery and its self-generated institutions, networks, and practices and organ procurement. Organ scarcity is like a mantra and it is invoked, without question, in reference to the long "waiting lists" of expectant "candidates" for various transplant surgeries (see Randall 1991). In the U.S. alone, for example, despite a well organized national distribution system and a law that requires hospitals to request donated organs from next of kin, there are close to 50,000 people currently on various active organ waiting lists. But this 'scarcity' , created by transplant technicians, represents an " artificial" need that can never be satisfied, for underlying it is the quintessentially human denial and refusal of aging and death now facilitated by unprecedented possibilities of extending "brute life " with the organs of the other.
We are using the terms " brute life" or "bare life" -- terms resembling what the Greeks called "zoe", the " simple" fact of living that is common to all organic things -- advisedly . We introduce "brute life" as a parallel concept to "brain stem death", in order to make the point that life and death -- as we once knew them -- have been replaced in the time of transplant surgery with surrogates, facsimiles, and holograms. Death, for example. The determination of the hour (or moment) of has become the province of the State alone, because ordinary mortals are simply incapable of recognizing death in its newly legislated form. In the chilling words of one proponent of brain stem death: " We [experts] must therefore define the moment of the end and not rely on the rigidification of the corpse...or even less, on signs of putrefaction, but rather simply keep to brain death...What follows from this is the possibility of intervening on the false live person. Only the State can and must do this...Organisms belong to the public power: the body is nationalized" (Agambem 1998:165, citing Dagognet).
Meanwhile, the once so called "gift of life" that is extended to terminal heart , lung, and liver patients is , in fact, something other than the commonsense notion of a lived life. For example, the "survival" rates ( recorded in hospital statistics) of a great many liver transplant patients conceals the living-in-death, the weeks and months of extended suffering, a suffering sometimes to the death in hospital of these "successfully" transplanted patients. It is enough to make one well-informed bio-ethicist (M.Rorty, personal communication) state that she has stipulated in her own living will that all her ‘usable’ organs minus her liver may be taken and used by medical science . " But I draw the line", she said, "when it comes to liver transplantation. I have observed too much suffering in those post-operative patients to which I have no desire or intention to contribute."
Every well informed transplant patient today is warned that they are not exchanging a death sentence for a new life, but that they are exchanging one mortal, chronic disease for another. " I tell all my heart transplant patients", said the irrepressible South African heart transplant coordinator, Nursing Sister B.," that after the transplant they must accept that they now have AIDS and that in all probability they will die of an opportunistic infection resulting from the artificial suppression of their immune systems". While Sr. B’s statement is an exaggeration, most transplant surgeons accepted the kernel of truth being presented to the transplant candidate by Sister B.
"Transplant surgery is certainly not for everyone", said Dr. DN , a well known and respected South African heart transplant surgeon. "I myself would rather die than have a heart transplant and be made to live the kind of circumscribed, limited lives of my own patients". And for every romantic story of imagined affections between heart recipients and their altruistic, sacrificial "donors" that appear in tabloid feature stories, Dr. DN could match stories of major, unremitting depressions and of suicides in his personal sample of post- operative heart transplant patients. The surgeon told of a young patient with a brilliant career who jumped out of his hospital room window following the painfully slow recovery from an "excellent" transplant , and another and more recent story of a great concert pianist, who six months after receiving her new heart took a fatal dose of sleeping pills, leaving a note telling of her inability to endure life with a transplanted heart. In fact, Dr. DN admitted that in recent years he had given up transplant surgery in preference for other more positive cardiac surgical alternatives and procedures.
The arguments about 'scarcity of organs' has produced what Margaret Lock (1996, 1997 ) has called rapacious needs, and what Japanese sociologist Tsuyoshi Awaya (1994) unabashedly calls social ( or 'friendly') cannibalism. "We are now eyeing each other's bodies greedily", he says, " as a potential source of detachable spare parts with which to extend our own lives". While unwilling to condemn this newly emerging social contract, Awaya does want organ donors and recipients to face squarely just what kind of social exchange they are engaged in. In fact, in this context the "biosociality" (Rabinow 1996) of a few is made possible through the literal and unilateral incorporation of parts of bodies who, quite often, have no other social destiny than death ( Scheper-Hughes 1992; Castel 1991; Biehl n.d.).
Most importantly, the discourse on organ "scarcity" hides the phenomenal over-production of excess, wasted, and low quality organs that end up daily in hospital dumpsters throughout the world, due to the lack of technical training and social -technical infrastructure in addition to the simple indolence and ill-will of some hospital workers and medical professionals. A great many transplant surgeons, transplant coordinators, and other medical workers whom I interviewed in both South Africa and Brazil during 1997-1998 scoffed at the notion of "organ scarcity" given the appalling rates of youth mortality, accidental deaths, homicides, and transport deaths that produce a super-abundance of young, healthy "cadavers" and potentially usable organs. But these "precious commodities" are lost due to the lack of basic infrastructure: appropriately trained teams in hospital emergency rooms, rapid mobilization of transportation, the basic equipment to preserve "heart-beating" cadavers and their organs. But organ " scarcity" is also reproduced willfully and intentionally due to the increasing competition between public and private hospitals and among "competing" teams of even academic, university-based transplant surgeons who sometimes order their assistants to "dispose" of perfectly good and usable organs rather than allow "the competition" to get their hands on them.
And, while it may be said that "high quality" organs are always in scarce supply, there are plenty of what Dr. S., the director of a Brazilian Eye Bank, referred to as "left-over" organs and tissues floating around the world. Latin America, especially Brazil, has long been a favorite "dumping ground" for rejected products and surplus inventories produced in the first world , including "surplus" or "damaged" organs. In an interview with Dr. S. in 1997 , he complained bitterly about a U.S. based program, The International Cornea Project, which sends surplus tissues to his center. "Obviously," he said, "they aren't the best cornea. The Americans only send us what they have already rejected for themselves." 4
In South Africa, Mrs. R., the director of her country’s major Eye Bank, an independent foundation, generally kept about a dozen "damaged" or "post dated" cadaver eyes ( and not a blue eye among them) in her decidedly informal agency’s refrigerator for purposes that remained unclear. All I was told was that these "poor quality" "cornea" ( but , in fact, they were eyes ) would not be used for transplantation anywhere in South Africa. Meanwhile, the fax machine in Mrs. R’s office continued to spill forth messages and requests from North Africa. And, in his office not far away from the Eye Bank, Dr.B., the aforementioned Cape Town heart transplant surgeon , tried to retrieve an e-mail message from a physician in Southern California who was, according to Dr. B, "hawking his wares" over the Internet: guaranteed, "high quality" human organs, "fresh" airborne delivery promised to surgeons anywhere in the world within 30 days of placing an electronic mail order. "That ‘ colleague of yours’ should be investigated", suggested Dr. B. "Indeed", I agreed, " but hopefully not by me!"
Such questionable and often highly commercialized global exchanges have contributed to the transfer of transplantation knowledge and capacities to previously "under served" areas. And so these trans-national marketing practices are both criticized and defended by transplant specialists. A few years ago, for example, transplant surgeons, under the leadership of Dr. Thomas Starzl, from the University of Pittsburgh Medical School tried to establish an agreement with the Brazilian Association of Organ Transplantation whereby the Americans would exchange 'state of art' medical technology and specialized training in exchange for a supply of human livers. Starzl defended the proposal to Brazilians as an important step toward the development of an "international exchange in organs" guided by laws of supply and demand. Since Brazil had not yet developed the technology and expertise to perform liver transplantation the country had an "abundant supply" of usable livers that could help meet the needs of American patients. Eventually, Brazil would develop, as it now has, its own national liver transplant program and the excess "supply" of Brazilian livers would be kept for domestic "consumption". This controversy over this ‘deal’ was widely discussed and crticised in the Brazilian news media (see Isto E Senhor, 11 de dezembro, 1991; Folha de Sao Paulo , 1 dezembro, 1991,4:1). Above all there was a concern over the State’s loss of control of "national" bodies and body parts, similar to the national furor that accompanied revelations of an active and semi-covert market in Brazilian babies.
The inherent social justice issues and dilemmas in organ transplantation have long made human rights activists, physicians of conscience, bio-ethicts and other concerned intellectuals uneasy and, on occasion, indignant. Today, earlier concerns over the inequitable distribution of the benefits of transplantation and the organ trade -- whether international or domestic -- are being replaced by nationalist sentiments and passions. Indeed, as Agamben, citing Dagognet, noted the donor body , dead or alive, is becoming nationalized. The very idea of "Brazilian livers" going to American transplant patients gives Dr. O., a Brazilian surgeon , "an attack of spleen". Organs, he maintained, are and they should be treated as a " a national treasure", a statement I frequently encountered in Brazil and the New (democratic) South Africa. In commenting on the frequent requests by wealthy foreigners , but especially German, English, and Israeli "ex-colonials" living in Botswana and Nimibia to come to South Africa in search of organs and transplant surgery, Nursing Sister B., a soon to retire transplant coordinator for a large private hospital in Cape Town said: " I can’t stop them, of course, from coming to South Africa or to this hospital, but I tell them in words of one syllable that as far as I am concerned South African organs belong to South African citizens. And that before I see a white person from Nimibia getting their hands on a heart or a kidney that belongs to a little Black South African child , I myself will see to it that the bloody organ gets tossed into a bucket".
At that moment we passed by the private room of Mrs. T. , a "European" woman from Nimibia who had become virtually resident in the hospital where she had been waiting for over a year for a lung transplant. "And she can continue to wait till hell freezes over, as far as I am concerned", said the outspoken transplant coordinator. Nursing Sister B. explained that she was only following the directives of Dr. Zuma, South Africa’s controversial Minister of Health: " Dr. Zuma has said that all organs must go to South Africans first. Absolutely. So, as far as I am concerned, the organs will only go to a foreigner if there are no South Africans who are able to take it. All my foreign patients are told that. We still get quite a few Israeli patients in our hospitals looking for transplant surgery which they say they simply cannot get in Israel because it is against their religious codes, which isn’t true. I have a major problem with this. In Israel they have first world medicine. They don’t need to come to us....But they think that our private hospitals are better equipped and more comfortable. And they think that if they pay out of pocket they can get to the top of the list. It burns me up. So I just tell them to pack up and go home, that I will not give them an organ unless it is an extra organ that is just going to waste and will end up in a bucket. And I have said as much to old Mrs. T. lying in there : ‘No way will you get a lung transplant over and above any South African child’ .....And, the day I find out that they are doing her over and above a South African, I will be out there swinging. I don’t care about my position or my salary. I will go right down there to the ANC office and I will report it directly. I back Dr. Zuma on this one hundred percent."
But Nursing Sister B’s nationalist sentiments are not universally shared by transplant specialists in South Africa , for whom other considerations -- especially the ability of foreigners and "over-border" patients to pay double or more what the State or private insurance companies in South Africa allow for the surgery -- are often uppermost. In one public hospital’s kidney transplant unit, that I visited, for example, a steady stream of paying foreigners from Mauritius was partly responsible for keeping the unit solvent, during a time of severe budget cuts under Dr. Zuma’s policy transferring public funds to primary care.
Meanwhile, the arguments and concerns about social justice , nationalized organs, and the inalianability of body parts are countered by equally passionate arguments on behalf of individual autonomy, including the "right to sell" one's organs (see Daar 1992; Kervorkian 1992; Marshall, Thomas and Daar 1996; Richards n.d.). In all, the current amalgam of positions and discourses points to the constitution of new social ties, conceptions of justice, and social contracts around the mercantile "ends " and uses of the body.
An Anthropology of Human Organs
The phenomenal growth of transplant surgery and the commercialization of bought and sold organs within the context of a triumphant neoliberalism raises many issues that are central to anthropology: the relations of mind/body/society (see Scheper-Hughes 1994; Lock 199 ; Csordas 1994); social exchange, reciprocity, and the gift (Bourdieu 1977; Mauss 1977) versus the commodity (Appadurai 1986 ; Taussig 1992 ); scientific technologies and social technologies (Canguilhem 1994; Foucault 1979; Strathern 1992; Rabinow 1996); colonial legacies, authoritarian regimes and death (Taussig 1986; Comaroff and Comaroff 1992; Scheper-Hughes 1992; Biehl 1996). The stakes are high, for the technologies and practices of transplant surgery have demonstrated their power to reconceptualize the human body and the relations of body parts to the whole and to the person, and people and bodies to each other.
And, because transplant surgery has challenged and changed laws regarding rights of families vis-à-vis the state to the body at death, and has redefined death itself so as to foster its own interests, commonsense notions of the body, organs, extended life, and the hour of death are being rapidly reinvented throughout the world. But in these emergent processes and transformations, the voice of anthropology has been muted and the real debates have been waged largely among physicians, surgeons, bio-ethicists, sociologists and economists 5 . But when concepts such as agency and autonomy are invoked in defending the 'rights' of those who "wish" to sell a spare organ, anthropological voices might be raised to ask whether certain "living" things are not, after all, legitimate candidates for commodification and sale. While to a great many surgeons an organ is a thing, a mere (and expensive) object of health, to a critical anthropologist like Veena Das (1994) 6 one must ask the foundational question: "But just what is an organ?" Is there, in fact, any family resemblance between the transplant surgeon's donated kidney as a redundancy, a 'spare part', and the Indian textile worker's kidney perceived not only as a precious life resource, but now perhaps his (or her) organ of last resort offering a desperate way out of an economic impasse that has made life unbearable? These two 'objects' are not comparable: a kidney for a transplant surgeon is not the same order of "thing" as a kidney for a person living in conditions of perpetual ontological insecurity. And neither of these two "objects" is equivalent to that desired "gift of life" anxiously sought by the desperate renal transplant patient.
Furthermore, according to Das, when bio-ethicists state that we must begin our equerries from the premise of the body (and its organs) as the unique property of the individual, anthropologists might well intrude with our cautionary relativism. Can those living under conditions of social and economic abandonment really be said to be the "owners" of their kidneys? This seemingly self-evident first premise in all Western bio-ethical discussions would be roundly rejected by the hungry, sick, and impoverished sugar plantation workers in Northeast Brazil who frequently state with equally absolutist conviction: "Not even the owners of our own bodies are we." (Scheper-Hughes 1992, chapter 6).
Meanwhile, the new bio-technologies have thrown even conventional, western thinking about relations among body, the individual, self, and other into doubt. Can one still employ the Enlightenment notions of the body as the unique property of the individual in light of the many competing claims on human tissues and genetic material by pharmaceutical and biotechnology research companies ( see Rabinow 1996; Curran 1991; Neves 1993) ? And what about the unilateral claims of the State in those countries" (including Spain, Austria, Germany, and now, most recently, Brazil) which have adopted the legal principle of "presumed consent" giving the State full authority to dispose as it wishes of individual bodies , organs, and tissues at death? In Brazil, since the passage of this new law, it is common to hear angry references to the deceased as "the state's body." Certainly, neither the family, nor even the Church, has control over the body when the subject dies as they did in times not so long past. I recall here how recently it was in rural Ireland ( the mid 1970s) when it was still customary to call the village priest, never the village doctor, when a parishioner began to approach death, a death that every villager recognized without the aid of a medical or technical expert. And the passage to death itself was mediated by means of spiritual, not medical, body rituals.
Although most biomedical doctors have worked through their own doubts and "scientific" ambiguity about the criteria of brain death, others still remain cautious about applying these new standards vis-à-vis somatic death. Brain stem death is not, of course, an intuitive or commonsense perception. The understanding of death as a technical decision is far from obvious to family members, nursing staff, and even to some medical specialists. What conceptual indeterminacy accounts for the hiatus between cerebral death and somatic death? Does brain death anticipate or lead to somatic death? What logical inconsistencies must be "swallowed" in order to accept a " death " that precedes death? What is the practical, underlying relation between the time of technically declared brain" death" and the temporal demand -- the "deadline" as it were -- for harvesting usable organs? A younger forensic pathologist attached to the famous Groote Schurr Hospital in Cape Town, South Africa, where Christian Bernard experimented with the first 'successful' heart transplants, vehemently rejected the medical concept of 'brain death': "Speaking as a pathologist", Dr. L. said during an interview in 1996, " there are only two organic states: living and dead. Dead is when heart stops beating and organs decompose. Brain dead is not dead. It is still alive. Doctors know better and they should speak the truth to family members and to themselves. They could, for example, approach family members saying, 'Your loved one is beyond any hope of recovery. Would you allow us to turn off the machines that are keeping him or her in a vegetative state so that we can harvest the organs to save another person's life?" Then, it would be ethical. What is needed is some basic honesty".
As Das noted, the body may be defined as "brain dead" for one purpose -- organ retrieval -- while it may still be perceived as very much alive for other purposes, such as , the maintenance of family ties, affections, religious beliefs, or cultural notions of probity and dignity. Here, again, the rural Irish of a couple of decades past, are instructive. A young farmer from the Dingle Peninsula , Morisheen, shared with the earthy peasant wisdom that informed the country peoples’ practice of relatively long wakes : "It just wouldn’t be right or seemly to put ‘em into the hole when they are still fresh-like. You see, you never know, exactly, when the soul leaves the body. " But one thing was certain, the soul , the spirit force and persona of the individual, could hover in and near the body for hours or even days after the visible, somatic signs of death were visibly present. One can scarce imagine what Morisheen would have to say today about "brain stem "death after his sixty some odd years of sitting up with the dying and keeping company with the dead, the really, truly dead. and their resistant, hanger-on spirits.
Even when somatic death is obvious to family members the perceptual shift from the dead body -- the "recently departed", the "beloved deceased" , " our dearly departed brother" , etc. -- to the anonymous and de-personalized cadaver ( as usable object and reservoir of spare parts) may take more time than the hurried technical time allowed for the procurement of organs still in "good enough" condition to be used in organ transplantation. But even as this retrieval time is extended with new conservation methods and products, the confusion of family members and loved ones may increase. And so, in many "advanced" industrialized societies, including the U.S. (see Kolata 1995) brain stem death has yet to be embraced as the commonsense view of death, let alone in countries to the South where transplant surgery is relatively new and still rare (see San Francisco Chronicle, January 9, 1998: A9). We are not referring then to a problem of ignorant or misinformed masses. And we must consider the lack of consensus within the context of a long history of the medical exploitation of poor and "surplus" bodies?
At first glance it might seem that we are dealing with a totally new social reality -- with new ideas and practices about the body, organs, personhood and intersubjectivity, bodily exchange, mortality, "resurrection" and immortality. Indeed, transplant surgeons, themselves, like to suggest that this is the case and that the 'problem' of popular resistance derives from a gap in the existence of a radically new technology and the ability of the popular culture to absorb the changes. But as Veena Das (1996), again noted , there are many interesting genealogies to explore and alternative possibilities and ethical positions to consider.
The notion of 'organ scarcity', which we have just attempted to deconstruct above, has many historical antecedents. It is continuous, with earlier biomedical discourses and practices concerning the 'shortage' of human bodies and body parts needed for autopsy, medical training, and medical experimentation (see Majno 1969; Foucault 1975; Laqueur 1983). In Europe during the 16th, 17th and 18th centuries the corpses of gallows prisoners were offered to the barbers and surgeons to do with as they wished. Criminal bodies were required then for "scientific reasons", just as they are needed in China today (from petty thieves to political prisoners) to supply the global demand for transplant surgery (Rothman 1996). Just as the bodies of the sick-poor, ‘charity patients, are taken today for anatomy class lessons in medical school hospitals in Brazil as a means of canceling the ‘anonymous pauper’s’ medical debts (Scheper-Hughes 1992: ).
The question of who and what gets defined as "waste" in any given society ( (see Scheper-Hughes 1996), has bearing on the lives of the poorest poor in countries marked by a surplus of unidentified, unclaimed pauper bodies, as in Brazil (see Scheper-Hughes 1992; Biehl n.d.), South Africa (Lerer 1996) and India. There is, as Das (1996) noted a long ancestry to medical claims on surplus bodies. During the early modern period, paupers in Western Europe had no autonomy at death and their bodies could be legally confiscated from poor houses and work houses and 'sold' to medical students and to hospital. And because the 'body' was considered part of the 'estate' of the dead man and could be used to cover outstanding debts or other financial obligations, the bodies of paupers were often left unclaimed by relatives. And these unclaimed and 'unidentified' bodies were used for medical research and education. In Northeast Brazil, today, the poor imagine that 'the state can do anything' to or with their bodies. Many fear and resist hospitalization and beg to be allowed to go home to die. But those fears -- once specific to a particular and extremely marginalized social class, has now become the fears of ordinary working class and middle class Brazilian citizens who oppose the compulsory donation law which they fear will be used against them by hastening their deaths to serve the insatiable needs of a highly selective group of more affluent citizens. And such fears, we have learned , in the course of our research (see below) , are not groundless.
Similarly, in the history of colonial and authoritarian regimes we find administrative paradigms which keep informing social and medical exchanges and practices of governmentality today. Colonial regimes, such as those fostered by the British crown, used medical icons and practices (mediated by missionary and humanist apparatuses) to consolidate domination, to discipline and to " civilize" individuals and entire peoples in the colonies (Comaroff and Comaroff 1992). The European colonies became "laboratories" for experiments with natural sciences and public health practices. In these processes the "universal" and legitimating governmental role of the medical and biological sciences was increasingly formalized (Biehl 1996). In modern societies -- both authoritarian and democratic-- the sovereign power of the state has expanded its control over bodies and death through "advances" in biotechnology, genetics, and biomedicine. One origin point of modern "thanato-politics" is the medical experimentation made possible for the first time under Nazism ( Agambem 1998). Through the combination of applied eugenic sciences and death sentencing, those kept in concentration camps were re-assigned as society’s population of "living dead", as lives which could be taken without explanation or criminal charge. These new "living-dead" might be seen as the 20th century prototype of the later military and authoritarian attacks on other types of newly classified sub-citizens whose bodies and whose reproductive, medical, and genetic capacities could be "mined" for the use of other, super-citizens, such as, for example, the families of the elite military. Such seems to be the case in Argentina, Brazil, and South Africa during the worst phases of their military and police states in the late 20th century.
While wishing to maintain due proportions and specificities, the military regimes that emerged in Latin America , for example, beginning with the fall of democratic Brazil in 1964 , experimented with impunity on and with the bodies of thousands of suspected political dissidents. Disappearances and torture were only the part of it. During the Argentine ‘Dirty War" of 1976 to 1982, infants and small children of imprisoned dissidents were taken and awarded as booty to reward loyal, childless military families (see Suarez-Orozco 1987). This was justified in terms of "saving" the children from the "germ" of Communist indoctrination. Later, revelations concerning an illegal market in blood, cornea and organs taken from "executed" patients appeared in the British Medical Journal (Chaudhary 1992). In Brazil, during the military years, children were kidnapped , just as in Argentina, and now, it increasingly appears from our research , "organs" were kidnapped as well. And , in South Africa, during the worst phases of the apartheid regime, the ‘unidentified’ bodies of the countless victims of township violence and police raids were purloined at the police run state mortuaries for their usable tissues and body parts by state pathologists, collaborating with the apartheid regime.
Organ transplant surgeries and organ sales reached a peak in Brazil in the late 1970s during the hated presidency of General Figueiredo. According to our medical sources, which must remain strictly anonymous, during that period, in particular, the close relationship between military hospitals, military apparatuses and covert organs transactions was flagrant. A senior physician attached to large hospital explained that the commerce in organs in the late 1970s was blatantly apparent and even "quasi-legal". Police were involved in covert transactions under military orders and the doctors who were recruited to produce certain quotas of needed organs were protected from any legal action by police cover-ups.
Dr. Z recalled a surreal medical scenario in which doctors and transplant teams, acting under military orders, produced the required organs "on demand" by
inducing with drugs the symptoms and the appearance of brain death in mortally ill (but not yet brain dead) patients from the lower classes, people from families less able to defend themselves. He told of the case of a homeless man who had suffered a cranial trauma and was in coma. The doctors gave him barbiturates to speed up the appearances of brain death so that his organs could be harvested. Given these bizarre practices directed against the anonymous bodies of the poor , Dr. Z is adamantly opposed to Brazil’s new law of presumed consent: "This is a law against the poor. Nobody will remove a kidney in a private hospital, where there is even a team to provide psychological help to the family of victims... It is not the kidney of this super-citizen which will disappear, but the kidney of the poor individual [the sub-citizen] without resources, whose family is often hundreds of miles away."
During the military years, some surgeons harvested organs from the "living dead" sub-citizens out of fear and forced complicity. Others retrieved the organs for the financial rewards alone. Dr. Z: "The transplants teams in [certain] urban hospitals were real bandits after money. They were totally organ-crazy. I am not making unfounded accusations... During the late military government the transplant team of hospital Y used to transport organs from one region to the next via Super Highway Dutra with full military police escort, so that the purloined organs would arrive quickly and safely."
Here we have the material basis underlying the ‘epidemic’ of organ stealing fears and rumors spread by shantytown residents in Brazil and in Argentina in the late 1970s and early 1980s (Scheper-Hughe 1996) just when the military governments in each country believed that they could do as they pleased, help themselves as it were, to the bodies, the progeny, and body parts of those sub-citizens who were judged as expendable, as dirt, as Communists, in short, as social and political rubbish.
'The Organ Stealing' Rumor: A Late 20th Century Urban Legend
The lineage of this research in progress on the globalization of commerce in organs has its origins in the popular rumors that were circulating in the interior of Northeast Brazil during the mid 1980s. These were voices of the poorest of the poor living in hillside shantytowns of a sugar plantation market town, called "Bom Jesus da Mata" (Scheper-Hughes 1992). By 1984 the period of political violence was over and the gradual transition to democracy, accompanied by IMF economic austerities under 'Structural Adjustment', brought new hope and new forms of social suffering. It was during this time of transition that the stories of child kidnapping surfaced.
The rumor warned of the abduction and mutilation of children who were eyed as fodder , a source of spare parts, for wealthy transplant patients in the first world. Shantytown residents reported multiple sightings of large blue and yellow combi-vans driven by Americans or Japanese medical " agents", who were said to be scouring poor neighborhoods in search of stray youngsters. The children would be nabbed and shoved into the trunk of the van. Their discarded and eviscerated bodies -- minus heart, lungs, liver, kidneys, and eyes -- would turn up later by the side of roads, in between rows of sugarcane, or in hospital dumpsters.
At first, I interpreted these rumors as the creative inventions of illiterate people who had no way to substantiate such extreme claims. The rumors struck a resonant cord because they spoke directly to the ontological and bodily insecurity they felt as poor people on the face of the earth "to whom almost anything could be done". The rumors reflected the everyday threats to bodily security, urban violence, police terror, social anarchy, theft , loss, and fragmentation. What about the fear of new transplant surgeries? This was certainly attached to the mundane medical mishandling of the the bodies of the poor. Many imagined , with reason as it turns out, that autopsies were performed to harvest usable tissues and body parts from charity patients as a way of canceling their medical debts. It was common to hear in the 1980s that " little people like ourselves are worth nothing."
The rumors " logically" connected , and sometimes confused, the market in "spare babies" for international adoption with the market in "spare parts" for international transplant surgery. Prospective parents (mainly from Europe, North America and Israel) relied on Brazlian intermediaries to locate babies through institutions known in the vernacular as "fattening houses" (casas de engordar) transitional homes where infants were "fattened up" for overseas adoptions and where their various "handlers" were also "fattened" via the so-called legal fees -- often several thousand dollars -- which passed through many local hands. During recent fieldwork in Bom Jesus da Mata, I encountered dozens of cases of coerced adoption bordering on "child body stealing". Between 1992-1996 no fewer than 22 international adoptions had passed through the hands of a corrupt judge who was ultimately censored and removed for his role in facilitating the lucrative international adoption trade. In the midst of this co-existent black market for organs and babies, poor people can hardly be called "ignorant" for thinking that their babies are wanted as much for their lives as dead and for their organs.
The organ stealing rumors express the chronic "state of emergency" (see Taussig, 1992, citing Benjamin) and threatened subjectivity of subalterns living in a negative zone of existence where lives and bodies are experienced as a chronic crisis of presence (hunger, sickness, injury) on the one hand, and a constant crisis of absence and disappearance, on the other. These body stealing rumors were at the very least, we argued, metaphorically true operating by means of symbolic substitutions. They expressed an intuitive sense that something was gravely amiss in those bodies, perceptions grounded in a social and bio-medical reality in which their bodies and those of their children were seen, in fact, as dispensable and as fodder for the wealthy. The poor who inhabit Latin America's and Africa’s populous and miserable shantytowns and squatter camps can all too easily imagine that their bodies , and those of their young children, are eyed longingly by those with money , and that their deaths can be literally induced. As they envisioned it , the human organs ring proceeds from the bodies of the young, the poor, the black, and the beautiful to the bodies of the old, the rich, the white and the ugly.
It is the job of anthropologists, working in this murky realm, to disentangle the rumors of organ theft and expropriation of bodies from the effects of everyday violence and from the actual practices of medical exploitation which are real and terrible enough. The rumors and the metaphors of bodily invasion do materialize from time to time into ethnographic facts. The case, for example, of the theft of the eyes of Olivio Oliveira, a 56 year old, mentally ill, poor man living in a small town near Porto Alegre in the South of Brazil surfaced in November 1995 and almost immediately became an internationally cause celebre -- it remains a mystery. The case was investigated by doctors, surgeons, hospital administrators, police, and journalists. No arrests and no definitive conclusions were made. While some experts claimed that the man's eyes were pecked out by "urubus" (vultures) or gnawed away by rats, other noted that Mr. Oliveira's eyes appeared to have been carefully and surgically removed as if by a well trained medical specialist. How, why or to what end the eyes were harvested it was never discovered. Some people suggest that the corneas were used for transplant proceedings, others claim that the eyes were used by local corrupt politicians in black magic practices. Eventually the case was closed.
In our rational, secular world rumors are one (discredited) thing, while scientific reports in prestigious medical journals are quite another (credited) thing. However, in the late 1980s the two seemingly incompatible narratives began to converge. The veracity of the organ theft rumors was no longer limited to symbolic analysis as the metaphors materialized and hardened into scientific " facts". Dozens of articles published in The Lancet, Transplantation Proceedings, Journal of Health, Politics, Policy and Law, contained evidence of the growing 'commercialization ' of human organs. These range from India, where a veritable organs bazaar exists (despite of new laws suppressing it); to China, where compelling allegations about the use of organs from executed prisoners in profitable surgical procedures; to South Africa, where accusations of a gruesome traffic in body parts from police controlled state mortuaries to deviant healers involved in magical medicine has crossed the desk of the independent Truth and Reconciliation Commission; to Brazil, where various forms of "compensated gifting" to friends and family members to 'facilitate" transplant surgery is practiced; to the United States , where the American Medical Association's Committee on Ethics is evaluating a proposed "futures market" in human organs. For the remainder of this paper, I will highlight some of the discussions that have emerged from the Bellagio Task Force meetings and some preliminry findings of the comparative "Selling Life" project.
The Right to Sell and Future Markets
Despite evidence of widespread moral panic about bodily integrity and organ stealing some transplant surgeons and bioethicists, like Dr. Abdullah Daar , a member of the Bellagio Task Force, sees the commercialization and commodification of human organs, whether one likes it or not, as a fait accompli. Labor is sold, sex is sold, sperm and ova are sold, even babies are sold in international adoption. What makes kidneys so special, so exempt?, Daar has asked repeatedly. What is needed, he insists, is rigorous oversight and regulation in addition to an official Donors Bill of Rights that would both inform and protect potential donors.
But other members of the Task Force argue with Daar's reliance on western notions of contract and individual 'choice'. They are mindful of the social and economic context that makes the 'choice' to sell a kidney anything but a 'free' and 'autonomous' one in an urban slum of Calcutta or a shantytown of São Paulo. Similarly, the idea of "consent" is problematic in a prison with the executioner looking over one's shoulder. In response to Daar's critique of human rights "paternalism" and his defense of the autonomy of the individual and his or her right to sell an organ, Veena Das has countered that in all notions of contract there are certain exclusions -- such as in family law, labor law, and anti-trust law. There are basic assumptions concerning protected areas of life -- anything that would damage social or community relations -- that should be taken outside of contract theory. A market price -- even a fair one -- on body parts exploits the desperation of the poor. In addition, many humanists and bioethicists hold it to be self-evident that certain objects ( like irreplaceable, non renewable solid organs) are fundamentally 'inalienable' from the person. To ask the law to negotiate, as Daar suggests, a fair and reasonable price for a live human kidney is asking the law to go against everything that contract theory ( as well as society) stands for. In addition, one has to be concerned about the effects of organ sales on the coarsening of medical practice and on doctors who are forced to inflict physical harm on one person who is not viewed as a "patient" in order to sale the life of another individual who is exclusively viewed as "the patient".
Nonetheless, the movement toward commercialization is gaining ground in the United States. The AMA ( American Medical Association) is currently considering the possibility of financial incentives that would enable people to bequeath organs to their heirs or to charity for a price. Dr. L.R. Cohen (no relation to anthropologist Lawrence Cohen) has proposed a "futures market" in cadaveric organs that would operate through contracts offered to the general public. These contracts would provide that at the time of the seller's death, if organs are successfully transplanted from his body, a substantial sum would be paid to his designee. He suggests $5,000 per major organ utilized. Cohen's proposal is based on the idea that a market can exist side by side with and even supplement altruism. Pure gifting can always be expected among family members, but financial inducements might be necessary to provide organs for strangers.
Dr. Charles Plows, Chair of the AMA's Committee on Ethical and Judicial Affairs agrees in principle with Cohen's proposal: "The only one who doesn't get anything out of this whole transplant transaction is the person who's deceased. The hospital makes money out of furnishing the areas where this work is done. Certainly, transplant surgeons do well for themselves. The patient gets a life- saving organ. But the man or woman who's donating the organ receives nothing". At present the AMA is exploring several options. One is a fixed price per organ. Another is to let market forces -- supply and demand -- set the price. The idea still makes a lot of doctors in the U.S. uncomfortable, but Dr. Plows and his colleague hope to get a pilot project off the ground in 1998.
India: Kidney Bazaar
The first inklings of a commercial market in organ trafficking appeared in 1983 when an American physician, H. Barry Jacobs, established the International Kidney Exchange in an attempt to broker kidneys from living donors in the Third World, especially India. By the early 1990s upwards of 2,000 kidney transplants with living donors were performed each year in India, leading Prakash Chandra (1991) and other investigative journalists to refer to their country as the "great organ bazaar of the world." Proponents of paid living donors, such as Dr. K.C. Reddy, an Indian urologist with a thriving practice of kidney transplantation in Madras, argued that legalizing the trade would eliminate middle men who profit by exploiting paid donors.
Meanwhile, the free market in kidneys that catered through the 1980s to wealthy patients from the Middle East was forced underground following the passage of a law in 1994 that criminalizes organ sales. Recent reports by human rights activists, journalists, and medical anthropologists, including Lawrence Cohen, indicate that the law has produced in its wake an even larger domestic black market in kidneys. In some areas this new business is controlled by organized, cash-rich crime gangs expanding out from the heroin trade (in some cases with the backing of local political leaders). In other areas the business are controlled by ever more wealthy owners of profit hospitals.
An investigative report (Frontline December 26, 1997) found that a doctor-broker nexus in Bangalore and Madras still profits from the sale of kidneys by poor Indian donors to rich Indians, and to a smaller number of absolutely desperate foreigners with end-stage renal disease. A loophole in the law allows unrelated donors related to recipients by " ties of affection" to give a kidney following approval by local Medical Authorization Committees. These committees have been readily corrupted in areas where kidney sales have become an important source of local income. The result is that sales are now conducted with official seals of approval by the local Authorization Committee.
Today, Lawrence Cohen reports from the field , only the very rich can get an unrelated kidney. In addition, to paying the donor, the middle men, and the hospital, now they must bribe the Authorization Committee members as well. As for the kidney sellers, recruited by brokers who get half the cost of the sale, almost all are trapped in terrible cycles of debt and caught in the clutches of money lenders. The kidney trade is another link, Cohen suggests, in an older an earlier system of debt peonage which has been reinforced by neo-liberal structural readjustment policies. Kidney sales are a key sign, says Cohen, of the sometimes bizarre effects of a global capitalism that seeks to turn everything into a commodity.
And there are hints and allegations of criminal practices within this climate of rampant commercialism. During the Berkeley conference on the commercialization of organs, Das told an NPR ( National Public Radio, "Marketplace" program ) reporter of a young woman she encountered in Delhi whose stomach pains were diagnosed as a bladder stone requiring surgery. But, in fact, the doctor , the woman charged, used the bladder stone as a pretext to operate and remove one of her kidneys which he delivered to a middleman for an undisclosed and confidential third party.
China: Collective Bodies
Today, China stands alone in continuing to use the organs of executed prisoners for transplant surgery. Although this practice has been documented by various international human rights organizations and investigated even by the FBI, Chinese public officials have impeded any form of inspection or verification of the executions. In October 1984, a Chinese government directive issued a document stating that "the use of corpses or organs of executed criminals must be kept strictly secret, and attention must be paid to avoid negative repercussions" (cited in Human Rights Watch/Asia 1994:7).
Following up on a report published by Human Rights Watch/Asia in August 1994 on " Organ Procurement and Judicial Execution in China", David Rothman visited major hospitals in Beijing and Shanghai in 1995 where he interviewed transplant surgeons and other medical officers about the technical and the social dimensions of transplant surgery as practiced at their respective units. While the surgeons and hospital administrators answered technical questions freely and accurately, they refused to respond to such questions as: Where do donated organs come from? How many foreigners come to the medical institutions seeking transplants? How much do the hospitals charge for various transplant operations?
While the "blank stares" of Chinese medical personnel that Rothman encountered in response to his questions are no proof of complicity or guilt, Dr. C.J. Lee, head of a transplant team at in Taiwan, and member of the Bellagio Task Force, shared with the Task Force his personal knowledge and experience of transplant practices in Asia. The use of the organs of executed prisoners was practiced at his own unit in Taiwan until the country responded to the pressure of international human rights activists against it. China has held out, in part, Dr. Lee suggests, because of the need for foreign dollars and in part because there is less ethical soul-searching in China (as elsewhere in Asia) 'informed consent'. And, an alternative social ethic interprets the practice as a kind of public service, an opportunity to pay the community back for wrongs committed and to gain merit for ones self.
Of course, not all Chinese embrace this collectivist ethos and some see the practice as a gross human rights abuse. Mr. Lin , a recent Chinese immigrant to California, reported a disturbing story ( recorded for NPR's "Marketplace") during the Berkeley conference on the commercialization of organs, 1996. Just before arriving in California two years ago he visited a friend at a medical center in Shanghai. In the bed next to his friend was a wealthy and politically well situated professional man who told Mr. Lin that he was waiting for a kidney transplant later that day. His new kidney would arrive, he said, as soon as a prisoner was executed that morning. Minutes after the condemned prisoner was shot in the head, doctors present at the execution would quickly extract his kidneys and rush them to the hospital where two transplant surgery teams would be assembled and waiting. Reports by Human Rights Watch/Asia and by the Laogai Research Foundation (January 1995) have documented through Chinese informants and available medical and prison statistics that the state systematically takes kidneys, cornea, liver tissue and heart valves from executed prisoners. While these organs are sometimes given to reward politically well connected Chinese, often they are sold to medical "visitors" from Hong Kong, Taiwan, Singapore and other Pacific Rim nations who will pay as much as $30,000 for an organ.
Harry Wu, the human rights activists imprisoned in China until recently, was among the first to reveal the sale of prisoners organs. At the Berkeley conference Wu said: "In 1992 I interviewed a doctor who routinely participated in removing kidneys from condemned prisoners. In one case she said, breaking down in the telling, that she had even participated in a surgery in which two kidneys were removed from a living, anesthetized prisoner late at night. The following morning the prisoner was executed by a bullet to the head." In this chilling case, brain death followed, rather than preceded, the harvesting of his vital organs.
Wu and other human rights activists claim that the Chinese Government takes organs from 2,000 executed prisoners each year. Moreover, that number is growing because the list of capital crimes in China has been expanded to accommodate the demand for organs. While the precise number of prisoners executed in China each year is unknown, Amnesty International has recently reported that a new 'Strike Hard' anti-crime campaign has led to a sharp increase in the number of people executed, among them petty thieves and tax cheaters. In 1996 alone at least 6,100 death sentences were handed out and at least 4,367 confirmed executions took place. David Rothman, among others, is convinced that what lies behind the draconian anti-crime campaign is a 'thriving medical business' that relies on prisoners' organs for raw materials". The state is sponsoring, he says, an "insatiable killing machine" driven by the rapacious 'need' for fresh and healthy organs.
Recently , Wu’s allegations have been bolstered following a sting operation he set up in New York City that led to the arrest of two Chinese citizens offering to sell cornea, kidneys, livers and other human organs to American doctors wanting them for transplant surgery. Posing in the undercover operation as a prospective customer from a dialysis center, Wu produced a video tape of the men, Mr. Wang Chenyong and Mr. Fu Xingqi in a Manhattan hotel room offering to sell him quality organs from a dependable source -- fifty to two hundred prisoners executed on Hainan Island each year. Mr. Wang guaranteed this commitment by producing documents to Wu indicating that he had been deputy chief of criminal prosecutions in that prison. A pair of cornea would cost an exorbitant $ 5,000. In a taped telephone call, Wang boasted of making a 1000% profit. (Mail and Guardian 2/27/1998; San Jose Mercury News 3/19/98; New York Times 2/24/98). Following their arrest by FBI agents the men were charged with conspiring to sell human organs and are being held without bond awaiting criminal proceedings. As a further fallout, a German company, Frenesius Medical Care A.G., based in a suburb of Frankfurt, announced that it was ending its half-interest in kidney dialysis unit (next to a transplant clinic) in Guangzhou, China, citing the company's strong suspicions that foreign patients visiting the center may also be there to receive "kidneys harvested from executed Chinese criminals." (New York Times 3/7/98) Frenesius spokesman stated that the company did not know anything about the "cover-up" role of the dialysis center and that the center was totally administered by Chinese medical personnel and controlled by military commands.
South Africa:
Magical medicines, Human Rights Violations, and the Legacy of Apartheid
In South Africa, both under apartheid and in the new, democratic, and neo-liberal context, the practices of organ transplantation reveal the marked social and economic cleavages that still separate donors and recipients into two opposed and antagonistic populations. In the Black townships outside Cape Town, a stone's throw from the famous Groote Schurr teaching hospital where Christian Barnard first pioneered heart transplants, African people express fearful, suspicious, and negative attitudes toward organ transplantation. Among older people and recent residents from the rural homelands the idea of body tampering and organ harvesting around death bears too uncanny a resemblance to traditional witchcraft practices, especially "muti" (magical) murders or the purpose of removing body parts -- especially skulls, hearts, eyes, and genitals -- which are used and sold by deviant traditional practitioners to magically increase the wealth, influence, health or fertility of a paying client.
Paradoxically, both witchcraft and witch hunting ( see Niehaus 1996; Ashforth 1996; Keller 1994) have increased in some parts of even urban South Africa following the democratic transition. These seemingly apparent "gargoyles" of the past testify, instead, to the "modernity of witchcraft" (Geschiere 1997; Ashforth 1996; Taussig 1997) . to the very modern longings and heightened, if somewhat magical, expectations of poor South Africans improved life chances and material comforts since the fall of apartheid and the euphoric election of Nelson Mandela. Long frustrated desires for land, employment, housing, and a fair share in the material wealth still so casually flaunted by white South Africans, and the radical improvements promised through various neo-liberal development schemes and programs (such as the latest World Bank supported, macro-economic development initiative called GEAR ) which have not yet materialized have fostered a resurgence of traditional magic to make the promised wealth appear.
In 1995 an angry crowd of residents of Nyanga township in Cape Town tore down the shack of a suspected muti-murderer after police, tipped off by a local informer, discovered the dismembered body parts of a missing five year old boy, Lucky, smoldering in the fireplace and stored in medicine jars and boxes in the suspect's shack. On June 8, 1995, a Mr. Moses Mokgethi wa sentenced in the Rand Supreme Court , Gauteng, to life imprisonment for the murder of six children between the age of four and nine whose bodies were mutilated for hearts, livers and penises, which Mokethi claims he sold to a local township buisnessman for between 2,000 and 3,000 rands to strengthen his business (see Ashforth 1996:1228). Incidents like these, reported in the daily are followed and amplified by anxious rumors of luxury cars prowling squatter camps in search of children to steal for their heads and other body parts, of body parts stolen or purchased from public morgues in exchanges between greedy functionaries and witch doctors, of small business people using mutilated genitals in rituals to increase profits (see also White 1996).
Small wonder, then, that an older Xhosa woman I interviewed in February 1998, when confronted for the first time with the facts of transplant surgery, adamantly refused to believe it could be so. The old woman said it must be a hoax, a scary rumor which, like so many other improbable stories, circulated in her squatter settlement on the periphery of Cape Town . When I insisted that transplant surgery was no rumor but a bona fide medical practice, she exclaimed: " If what you are saying is true, that the white doctors can take the beating heart from one person who is dead, but not truly dead, and put it inside another person to give him strength and life, then these doctors are witches just like our own".
Apartheid Medicine: White Bodies, Black Hearts
Younger and more sophisticated township residents are knowledgeable about organ transplantation but most rejected it on the grounds of South Africa's legacy of apartheid medicine. "Why is it", I was asked, " that in our township we have never met or even heard of such a person who received a new heart, or eyes, or a kidney? And yet we know a great many people who say that the bodies of their dead have been tampered with in the police morgues? " Township residents are quick to note the inequality of the exchanges in which organs and tissues have been taken from young, productive, black bodies -- the victims of an excessive death toll produced by apartheid mandated substandard housing, poor street lighting, bad sanitation, and dangerous forms of transport as well as by the political violence of the struggle years -- and transplanted to older, debilitated, affluent , white bodies. In their view, organ transplantation reproduces the notorious Body of Apartheid. Even today in the context of the new South Africa, my township critics charged, surgery and other high tech medical procedures, including organ transplantation, are largely the prerogative of Whites.
Indeed, there is some truth to these allegations. During the heyday of apartheid, transplant surgeons were not obligated by law to solicit family consent before harvesting organs ( and tissues) from cadaveric donors. "Up until 1983 or 1984 the conditions for transplantation were easier ", said Dr. B., a young heart transplant surgeon at Groote-Schurr Hospital, where Dr. Christian Barnard pioneered heart transplant surgery. " We didn't worry too much in those early days. We just took the hearts we needed. But it was never a racial issue. Christian Barnard was very firm about this. He was one of those people who just ignored the government. Even when our hospital wards were still segregated by law , there was no race apartheid in transplant surgery". But what Dr. B. meant was that there was absolutely no hesitancy on the part of the doctors in transplanting Black and Colored
( mixed race ) "donor" hearts -- taken without consent or even without the knowledge of family members -- into the ailing bodies of their mostly white, male patients. (Up through the early 1990s about 85% of all heart transplant recipients at Grotto-Schurr hospital were white males). Transplant doctors refused to reveal the "race" of donor hearts to concerned and sometimes racist organ recipients, saying that 'hearts have no race'. "We always used whatever hearts we could get", the doctor concluded, no matter whether the patient feared he might be getting an "inferior organ".
With the passage of the Human Tissue Act of 1983 requiring prior individual consent and/or family consent at the time of death, organ harvesting became more complicated with far fewer donor organs from Blacks and virtually no donors from the large Cape Malay Moslem community. Since then, transplant co-ordinators arrived on the scene to educate, facilitate, and co-ordinate organ harvesting primarily from white and mixed race (Christian) donors.
When asked why , until very recently, there were so few Black and mixed race heart transplant patients, Dr. B. referred to a body of "scientific research indicating that Black South Africans coming from rural areas did not suffer the modern, urban and stress related scourges of ischemic heart disease which primarily affects more affluent white males in urban settings." But I found it difficult to reconcile this medical "just so" story with the reality of South African Blacks and Coloreds subjected throughout the apartheid years to forced migrations to mines and other industries in the Gauteng peri-urban area, and to forced removals to urban squatter camps, worker hostels, and other highly stressful urban institutions. In the Western Cape region , where Groote Schurr Hospital is located, 89.9 percent of the population is urban. In Gauteng, where Johannesburg and the second largest center of organ transplantation is located, 96.4 percent of the population is urban. It was also difficult to explain why, following the democratic transition, there was , in fact, an almost immediate democratization of heart transplant surgery at the public, academic hospital. In 1994, the year of the elections, for the very first time a significant percentage, 36 percent, of all heart transplant patients at Groote Schurr hospital were assigned to mixed race, Indian, or Black patients.
Eyes: the Window of the Soul
At the Cape Town state-run police mortuary, I investigated allegations by Black township residents of the misuse of body parts related to transplant surgery and to "muti" medicine. During the worst phases of political oppression under apartheid a great many physicians, district surgeons, and state pathologists working with police at the state run mortuaries collaborated in covering up in their autopsy reports the police actions that resulted in deaths and body mutilations of hundreds of "suspected terrorists" and political prisoners. For these reasons, the public morgue remains a place of horror and grave suspicion for a majority of township people.
The rumors of criminal body tampering practice have been augmented by several cases of blatant abuse that came to the attention of journalists. In 1995, the Afrikaans- medium newspaper, Rapport, (23 July 1995:1), reported criminal events at the state mortuary in Braamfontein, Johannesburg, concerning the body of Chris Hani. According to allegations made to the Johannesburg Regional Court, a policeman showed a private detective the mutilated body of Black political hero, Chris Hani, the day after he was murdered in 1993. Sargent Andre Schutte pled innocent to charges of defiling and corrupting the body of the slain leader. During preliminary investigations at the morgue a human heart, said to be that of Hani's, was sold by a minor official to investigative reporters for R2,000 (about $600 dollars at that time). The heart was subsequently handed over to the police.
In the course of my investigations in 1993-4, 1996, and again in 1998, I learned that cornea, heart valves, and other human tissues were routinely harvested by state pathologists and other mortuary staff and distributed to surgical and medical units, usually without soliciting family members' consent. The 'donor' bodies, most of them township Blacks and 'Coloureds', the unfortunate victims of violence and other traumas, are handled by state pathologists attached to public mortuaries still controlled by the police. There is disagreement among pathologists about these practices which while not strictly illegal are seen by some as unethical. The law stipulates that doctors may remove organs and tissues without prior consent if reasonable efforts were made to locate family members.
A state pathologist , attached to a prestigious academic teaching hospital, shared with me his uneasiness over the informal practice of 'presumed consent' with respect to the marginalized bodies of those who end up in the police morgues. A loophole in the 1983 Organ and Tissue Act allows "appropriate" officials to remove needed organs and tissues without consent when "reasonable attempts" to locate the potential donor's next of kin have failed. Since eyes and heart valves need to be removed within hours of death and given the difficulty of locating families living in distant townships and informal communities (squatter settlements) without adequate transportation and communication systems, some doctors and coroners use their authority to harvest the prized organs without giving too much thought to the feelings of the relations. They justify their actions as motivated by the altruistic desire to "save lives" despite the distress this behavior causes to the Black community. In return these organ providers gain, minimally, the gratitude, professional friendship, and the respect of the prestigious transplant teams who owe them favors in return. Since harvested cornea and heart valves are sold to the hospitals and clinics -- domestically and in the case of heart valves internationally -- that request them, the possibility of secret gratuities and honoraria paid on the side to cooperating mortuary staff cannot be discounted. Small gratuities were paid, for example, by a local , independent eye bank to transplant coordinators for the favor of carrying donor eyes designated for air transport to the local airport.
There is an active debate among pathologists, forensic specialists, lawyers, bio-ethicists and theologians about current mortuary-to-surgery practices, some of which are deemed unethical and others illegal. Currently, the South African Truth and Reconciliation Commission (TRC) is considering allegations by the family of a 17 year old victim of alleged "gross human rights" violations concerning the removal of his eyes at the Salt River Mortuary in August 1992 without family consent. The petition to the TRC by the parents of the late Andrew Sitshetshe , of Guguletu township, followed four years of failed attempts to get the attention of the ethics committee and hospital administrators at Groot-Schurr. The case was taken up by the TRC during its Health Sector Hearings in June 1997 in Cape Town as a graphic "illustration of the common practice of harvesting body parts from mortuaries without consent of the next of kin and the repercussions this had on one family" (Health and Human Rights Project: Professional Accountability in South Africa, Submission to the TRC for Consideration at the Hearings on the Health Sector, June 17 and 18, 1997).
The chilling story that Mrs. Sitshetshe told the TRC was as follows. On a Saturday night in August 1992, 17 year old Andrew Sikhosonke Sitshetshe, was gunned down by gang members in Guguletu township. Andrew had gone to a men's hostel to collect payment for a radio he had repaired for one of the residents. While waiting there he got caught in the line of fire by members of the infamous Balaclava Gang who broke into the hostel and began shooting. Badly wounded, Andrew was taken to the Guguletu police station where he waited on the floor for the ambulance to arrive. In the meantime his mother, Rosemary Sitsheshe, arrived at the police station to find her son lying on the floor with a bleeding chest wound. She identified herself and her son to the police officers. By the time the ambulance attendants arrived at the police station, Andrew was dead and they refused to take the body. The police called the Salt River Mortuary and advised Mrs. Sitsheshe to go home until the morning when she should report to the Mortuary and claim the body for burial. At the mortuary the state pathologist gave permission for Andrew's eyes to be removed and handed to Mrs. Roome of the Eye Bank Foundation of South Africa in Mowbray, Cape Town. The doctor gave his consent based on misinformation given him at the police mortuary that the body of Andrew Sitsheshe had not been identified and there was no paper found on the body indicating that the deceased was not an eye donor. Mrs. Sitsheshe had never been contacted.
When Andrew's parents arrived at the Salt River Police Mortuary the following morning they were turned away saying that the body of their son was "not ready" yet. They were finally allowed to view the body at 3pm. Mrs. Sitsheshe expressed shock at the changes she saw in her son's body since he was carried away to the morgue:
'I noticed that the blanket was covering the body was full of blood; and I discovered that he had two deep holes on the sides of his forehead and you could easily see the bone. His face was in bad condition. And I could see that something was wrong with his eyes...I started to question the people in charge and they said that nothing had happened..."
Mrs. Sitsheshe sought legal assistance in Cape Town and with the help of an independent pathologist she was able to determine that her son's eyes were surgically removed and the orbits filled with cotton wool and covered by a pink plastic eye cup in each case. The Sitsheshe family returned to confront the staff of the Salt River Mortuary and were treated abusively. The Chief State Pathologist allegedly explained that it would have been impossible to phone the family (who did own a telephone) in the middle of the night. But Mrs. Sitsheshe replied that the entire family was awake on that night anyway, and as it was easy to call the director of the Eye Bank in the middle of the night, why not the parents?
Andrew Sistshe was buried without his eyes. A few days later, Rosemary Sitsheshe , still unable to rest, went to the Eye Bank to confront Mrs. Broome, who told the mother that her son's corneas were removed and given to two recipients and her son's eyes were being kept in the refrigerator for the time being. She refused to surrender them to Andrew's mother who replied in a great state of distress: " Although my son is buried, is it good that his flesh is here, there, and everywhere, that part and parcel of his body are still floating around?"
Since that time, Mrs. Sitsheshe suffered depressions and lost her job as a school cafeteria worker; her husband left her. But she joined forces with other family members in a campaign to end the unauthorized harvesting of organs of mainly black and poor people in state mortuaries who have died tragic and violent deaths/ She told the TRC Hearings:
"I stand up and condemn this act in the strongest terms and those who are guilty must be punished...Must we be stripped of every comfort as well as our dignity?...How could the medical doctor decide or know what was a priority for us? "
Among the dozen questions with respect to the case of Andrew Sitsheshe that the TRC was asked to address is one that is central to our concern here: Under the [South African] Bill of Rights, how can we ensure equal access to organ transplantation for all of South Africa's people in need, especially those not covered by medical aid schemes? How can we institute equitable harvesting and transplantation?
In fact, the section in the Bill of Rights dealing with bodily integrity specifies
" the right of all citizens to make decisions about reproduction and their bodies free from coercion, discrimination and violence.The inclusion of the words "and their bodies" was explicitly included (according to an ANC spokesperson) to refer to organ transplantation in South Africa. Before the TRC there were only rumors and allegations
Only now following the TRC Hearings into Gross Human Rights abuses are those 'wild rumors' being substantiated as the details of apartheid medicine and its medical-political conspiracies and abusive practices coming to light. Perhaps we might consider the strange organ stealing rumors as themselves participating in the spirit of the official truth commissions by testifying to human suffering on the margins and peripheries of "the official story."
The Move to Primary Care and the Privatization of Organ Transplantation
Sentiments like those of the Sitsheshe family (above) toward organ harvesting and transplantation practices are widespread in the South African Black community and account, in part, for Health Minister Dr. Zuma's controversial transfer of public support away from tertiary medicine to primary care, a move not without its own contradictions. At present, organ transplantation is moving rapidly from the state, public sector hospitals and the academic research centers where transplantation was first developed in South Africa to new, relatively autonomous, private, for profit hospitals. Consequently, soon only the wealthy and those with excellent (private) medical insurance will have access to transplantation.
As if in anticipation of this outcome, the Constitutional Court of South Africa, responding to a painful case brought before the judges concerning a man from Durban suffering end stage renal disease, decided against the claim of every South African patient's "right to dialysis" and to kidney transplantation. The Supreme Court upheld the South African Department of Health's criteria for chronic renal dialysis based on the principle that "it will not be possible in the foreseeable future for chronic renal dialyses to be provided for all patients who could potentially benefit from this treatment". The main criterion for chronic dialysis is suitability for a renal transplant. This, in turn, requires that renal transplant candidates be free of other significant physical or mental disease, including vascular disease, chronic liver disease, or lung disease, malignancies, or HIV positivity.
As organ transplantation moves into the private sector, a creeping commercialism has necessarily taken hold. In the absence of a national policy regulating transplant surgery, and no regional, let alone national, official waiting lists, the distribution of transplantable organs is appallingly informal and subject to corruption. Public and private hospitals can hire their own transplant co-ordinators who are under pressure from competing, even warring, factions to "drop" the usable heart or kidney in a bucket rather than give it to a competitor. The situation is grave. The temptation "to accommodate" patients who are able to pay is affecting both the public and private sector hospitals. At Groote-Schurr's kidney transplant unit, a steady trickle of donor "couple" arrive from Mauritius and Nimibia. Although they claim to be related, the nurses say that many are simply paid donors, but since they arrive from across the border, the doctors look the other way. While I was in Cape Town, a very ill older business man from the Cameroon's arrived at the kidney transplant unit with a paid donor the man found in Johannesburg. The donor was a young university student from Burundi who agreed to part with one of his kidneys for his expenses and a bonus of 2,000 rand (about $400). The head of the kidney unit read the international medical codes against organ sales to the pair, explained the risks and dangers of living kidney donation, but as they persisted he agreed to order the blood matching tests. When they failed to match and were turned away, the symbiotic pair begged to be transplanted in any case. Such was their almost unimaginable desperation, that they were willing to face the eventuality of almost certain organ rejection. Of course, the doctors refused their plea. Will private hospitals be as conscientious as the public ones in refusing hopeless cases among those patients willing to pay regardless of the outcome?
Meanwhile, those who live at a distance, without easy means of communication and transportation, such as in the sprawling townships of Soweto outside Johannesburg and Khayalitsha outside Cape Town have a ghost of a chance of receiving a transplant. The rule of thumb among heart and kidney transplant surgeons in Johannesburg is: "No fixed home, no phone, no organ ". The ironies are striking. At the famous Chris Hani Bara Hospital on the outskirts of Soweto, I met a sprightly and playful middle aged man, flirting with nurses, during his dialysis treatment. "He's very familiar with you!", I commented to the head nurse. "And well, he might be", she replied. "He's been on the waiting list for a kidney for more than 20 years." Not a single patient at the huge Bara Hospital's kidney unit had received a transplant in the past year.
The week before I was in the splendid, suburban community of Sun Valley outside Cape Town where, in a private, gated community protected by armed guards for the comfort and security of the wealthy , white, and mostly retired residents , I met with Mr. W. Breytanbach, Ex-Deputy Minister of Defense under President P.W. Botha, still recuperating from the heart transplant he had received on his government pension and health plan in less than a month's wait. At first he was distraught on learning that he was the recipient of the heart of a young, colored nurse, and at first he blamed his difficult recovery on his "inferior woman's heart". He has since softened, he says, and he has even tried to contact the family of his donor through the hospital network so that he could thank them. The family has not responded. As we chatted about his time served on South Africa's notorious Security Committee, I had to control my rising sense of outrage. The sub-heading, "State Killer Gets New Heart" came several times to mind during the interview, prompting me ,finally, to ask Mr.Breytanbach if he thought he owed the new South African government something for having given him, of all people, a new lease on life. He replied:
" To this day I still do not know why I was given a heart transplant. I know that at the time I had only 10 or 12 days at most to live and if I did not have[the operation] I would be dead. And it is great to be alive! I look at the country and I see that there may be more people more deserving than me of a heart transplant , and many who cannot get it because of a shortage of funds or of donors with so many people waiting for hearts. But by hook or by crook, I don't know how Dr.V. does it [in the private hospital] but I have been there and I can see that there are no questions asked about whether the person can really afford it or not. If need be, [heart transplant surgeon] just goes ahead and operates."
At the venerable Groote-Schuur Hospital, however, the waiting time for all major surgical procedures has increased and a virtual moratorium has brought heart transplantation to a standstill.
Brazil : Compensated Gifting and the State's Body
While the transnational trade in organs has received extensive media attention, most organ trade is domestic. In Brazil during the late 1970s and 1980s there was evidence of the kind of rampant commercialism found in India today. As Dr.X, the nephrologist denounces: "The [organs] traffic was practically legalized here. It was a safe thing, taking place in both big and small hospitals, with no concern over its legality because of police cover-ups." The commerce reached a "scary peak" in the 80s when newspapers brought an impressive and alarming number of ads of organs for sale: "there were too many people offering to sell kidneys and corneas at varied prices, besides blood sold in the blood banks."
Ads, like the following from the Diário de Pernambuco, appeared in Brazil's major newspapers: " I am willing to sell any organ of my body that is not vital to my survival and which could help save another person's life in exchange for an amount of money that will allow me to feed my family." Ivo Patarra (198 : ), a journalist in Sao Paulo, tracked down the man who placed this ad, locating him in a peripheral suburb of Recife. Miguel Correia de Oliveira, age 30, married and the father of two small children, was unemployed and worried about his family's miserable condition. His rent was unpaid, food bills piling up, and he didn't even have enough money to purchase the newspaper every day to see if there had been a response. He told Patarra that he meant every word in the ad: "I would do exactly as I said and I have not regretted my offer. If I am able to sell [an organ] I know that I would have to undergo an operation that is difficult and risky. But I would sell any organ that would not immediately cause my death. It could be a kidney or an eye because I have two of them."
Mr. Oliveira said he had gotten the idea from a woman he had met in Belo Horizonte who had placed an ad in a paper and subsequently sold a kidney for $3,000. Miguel admitted that to sell an organ was a serious sin, but due to the desperate situation of his family , it was necessary, he said, "to put religion aside". Family members and neighbors tried to talk him out of the decision but he remained firm: "Look, I am living through all sorts of crises at present and I cannot make ends meet. If I could sell a kidney or an eye for that much money I would never have to work again. But I am not stupid. I would make the doctor examine me first and then pay me the money up front before the operation."
Beginning in the 1990s such blatant ads were prohibited. But as Dr. X points out "By no means has the commerce stopped. It is only less apparent." In fact, potential and often desperate willing organ "donors" still show up today unannounced at public and private transplant centers in Brazil's urban centers. But the wording of the proffered exchanges is more discreet, from "selling" and "buying" organs to "offers of help". Most are just hoping to solve a life dilemma by selling an 'spare' organ, but others, said Dr. N. of Sao Paulo , are quite simply "loucos" (mad). He recollected the "absurd" case of a man who offered to give the hospital's transplant team "all" of his organs, saying "I am already dead, all I have is this body, so please use it." He spoke of being " just a carcass" and wanting to donate everything. This "mad man", said Dr. N. was willing to accept for the sake of his family any "honorarium" that the hospital wanted to pay which he would leave behind to his loved ones. The doctors, of course, politely refused the man's offer. But Dr.N. continued: "Quite often people call me saying 'I am willing to sell a kidney, I am an engineer, an economist, I am unemployed, I have a debt... How do I proceed with the
‘ donation?' But we do not take the con