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By Nancy Scheper-Hughes
Department of Anthropology
University of California, Berkeley 94720
The urgent need to define new international ethical standards for human transplant surgery , in light of reports of abuses against the bodies of some of the most socially disadvantaged members of society, brought together in Bellagio, Italy in September 1995 a small , international group of transplant surgeons, organ procurement specialists, social scientists, and human rights activists, organized by the social historian David Rothman. This group, "The Bellagio Task Force on Organ Transplantation, Bodily Integrity, and the International Traffic in Organs" , of which I am a member, is examining the ethical, social, and medical effects of the commercialization of human organs and accusations of human rights abuses regarding the procurement and distribution of organs to supply a growing global market in human body parts.
At the top of our agenda are allegations of the use of organs from executed prisoners in China and elsewhere in Asia and South America for commercial transactions in transplant surgery; the continuing traffic in organs in India despite new laws which make the practice illegal in most regions; and the truth, if any, behind the global rumors of body stealing, child kidnapping, and body mutilations to procure organs for transplant surgery. My earlier research on the social and metaphorical "truths" that lay behind the child-and-organ stealing rumors in Brazil (see Scheper-Hughes 1992, chapter 6) and elsewhere (Scheper-Hughes 1996) lead to my invitation to serve on the Task Force as their anthropologist-ethnographer. At the second (1996) meeting in Bellagio, Italy, I was "delegated" to initiate ethnographic research on the social context of transplant surgery in a few sites -- Brazil, South Africa, and, through collaborations with my UC Berkeley colleague, Lawrence Cohen, India -- each chosen because transplant surgery is currently a contentious issue there. India continues to be a primary site for a lively domestic and international trade in kidneys purchased from living donors. Despite medical and philosophical debates about kidney sales (see Daar 1990, 1992; Reddy 1990; Evans 1998; Ratcliffe-Richards, et al 1998) and medical outcome studies showing high mortality rates among foreign recipients of purchased Indian kidneys (see Salahudeen et al. 1990), there have been no follow-up studies documenting the long-term medical and social effects of kidney sales on the "sellers", their families, or their communities.
In Brazil, allegations of child kidnapping, kidney theft, and rampant commerce in organs and other tissues and body parts continue despite the passage in 1997 of a "universal donor" law that was intended to stamp out rumors and to prevent the growth of an illegal market in human organs. South Africa was chosen as an initial research site because of the country's privileged position in the history of transplant surgery and because of the radical re-organization of public medicine under the new democracy and the channeling of state funds away from tertiary care and complex medicine toward primary care. This has initiated a transfer of dialysis and transplant surgery into the private sector with predictable negative consequences in terms of social equity . Meanwhile, allegations of gross medical abuses -- especially the illegal harvesting of organs at police morgues during and following the apartheid years -- have come to the attention of South Africa's official Truth and Reconciliation Commission (TRC). Finally, in 1998, Sheila Rothman and a small team of medical students in New York City initiated parallel research in New York City. Their preliminary findings (see S. Rothman 1998) reveal aspects of an apartheid like practice of transplant surgery that discriminates against the successful pre-screening of African-American, Latino, and women as candidates for organ transplantation there.
In light of these in the procurement of organs, the first report of the Bellagio Task Force, published in the medical journal, Transplantation Proceedings (see Rothman et al, 1997) recommended the creation of an international human donor surveillance committee that would investigate allegations of abuses, country by country, and serve as a clearing house for information on organ donation practices. As a first step toward that goal, Lawrence Cohen, David Rothman and I, have spear-headed a new three year project on " Money, Markets and Bodies", supported by the Open Society Institute and housed at the University of California, Berkeley and at the Medical School of Columbia University, New York that will investigate, document , publicize, and monitor (with the help of international human rights activists and local ethnographers and medical students ) human rights violations in the procurement and distribution of human organs. In the first year we expect to add several new sites in Eastern Europe, the Middle East, Southeast Asia, and South America to our on-going and collective research.
The following essay reports on an initial series of forays into alien and, at times, hostile and dangerous territory, where we have been exploring some of the back stage scenes of tissue and organ harvesting and organ transplantation as practiced today in public morgues, laboratories, prisons, hospitals and in discreet operating theaters where the exchanges of bodies, body parts, and technologies traverse local, regional, and national boundaries. Although my research is located in Brazil and South Africa, virtually every site of transplant surgery is in some sense tied to global networks and exchanges. Indeed, one could start from almost anywhere -- India, Japan, North America, Eastern Europe, the Middle East, China, South East Asia, South America, or Southern Africa -- and find one's local study site embedded in complex loops of regional and trans-national exchange. Meanwhile, the social world of transplant surgery is small and personalistic. At the upper echelons of academic transplant practice it could almost be described as a face-to-face society. Therefore, maintaining the strict anonymity of informants is essential, with the exception of those whose opinions are comments are already part of the public record.
Research took place between 1996 and 1998 during a total of five field trips, each roughly six to eight weeks in duration, in Brazil ( Recife, Salvador, Rio de Janeiro, and Sao Paulo), in South Africa ( Cape Town and Johannesburg), and, by Cohen, to India. At each site, aided by a small number of local research assistants and anthropologist-colleagues, we conducted observations and interviews at public and private transplant clinics and dialysis centers, medical reserach laboratories, eye banks, public morgues, police stations, newspaper offices, legal chambers and courts, state and municipal offices, parliament and any other sites where organ harvesting and transplant surgery were transacted, discussed or debated. In addition to open-ended interviews with transplant surgeons, transplant co-ordinators, nurses, hospital administrators, research scientists, bio-ethicists, transplant activists, transplant patients patients and living donors (related and unrelated) in each of these sites, Cohen and I spent time in rural areas and in urban slums, townships, and shantytowns located in proximity to large public hospitals and medical centers in order to discover what poor and socially marginalized people imagined and thought about organ transplantation, and about the organization of the body, the symbolic and cultural meanings of body parts, blood, death, and the proper treatment of the dead body.
Of the many fieldsites in which I have found myself, none compares to the 'world' of transplant surgery for its mythical properties, its codes of secrecy, its impunity, and its exoticism 3 . The ‘organs trade’ is extensive, lucrative, explicitly illegal in most countries, and unethical according to every governing body of medical , professional life. It is therefore covert. In some sites the organs trade links elite surgeons and technicians from the upper strata of bio-medical practice to ‘body mafia’ from the lowest reaches of the criminal world. The transactions can involve police, mortuary workers, pathologists, civil servants, ambulance drivers, emergency room workers, eye bank and blood bank managers, and transplant coordinators. Oliver Sack's (1995) felicitiuos phrase, "an anthropologist on Mars" comes immediately to mind. Playing the role of the anthropological court jester we began by raising "foolish" but necessary "first questions": What is going on here? What truths are being served up? Whose needs are being overlooked? Whose voices are being silenced? What unrecognized sacrifices are being made? What lies behind the transplant rhetoric of gifts, altuism, scarcities, and needs? I will argue that transplant surgery as it is practiced today in many global contexts is a blend of altruism and commerce, of science and magic, of gifting, barter and theft, of choice and coercion. Transplant surgery has re-conceptualized social relations between self and other, individual and society, and among the "three bodies", the existential lived body-self; the social, representational body; the body political (see Scheper-Hughes and Lock 1997). Finally, it has redefined the meanings of real/unreal, seen/unseen, life/death;, body/corpse/cadaver, person/non-person, rumors/ fiction/ fact. Throughout these radical transformations, the voice of anthropology (and of medical anthropology) has been relatively muted and the real and high stake debates have been waged among surgeons, bio-ethicists, international lawyers, and economists. From time to time anthropologists have intervened to "translate" or "correct" the prevailing medical and bio-ethical discourses on transplant practice as these conflict with alternative understandings of the body and of death. Here, Margaret Lock's (1996) animated discussions, debates, and difficult collaborations with the moral philosopher Janet Radcliffe-Richard (see Radcliffe- Richards, et al 1998), and Veena Das's responses to Radcliffe-Richards (Das, in press) and to Abdullah Daar (Das, 1996) are exemplary in this regard.
But perhaps what is needed from anthropology is something more akin to Donna Haraway’s (1985 ) radical "manifesto" for the cyborg bodies and cyborg selves that we have already become through the appearance of strange markets, excess capital, ‘surplus bodies’ and spare body parts. These have generated a transplant "body trade" which promises to certain, select individuals of reasonable economic "means" living almost anywhere in the world -- from the Amazon Basin 4 to the deserts of Oman -- a "miraculous" extension in what Giorgio Agamben (1998) refers to as bios -- brute or naked life, the elementary form of "species life" 5. In the face of this late modern dilemma -- this particular "end of the body" -- the task of anthropology is relatively straight forward: to activate our discipline’s "radical epistemological promise" ( Evens 1996) and our commitment to the "primacy of the ethical" (Scheper-Hughes 1994). What follows is a an ethnographic and reflexive essay on the transformations of "the body" and " the state" under conditions of neo-liberal economic globalism. The quotes indicate the fluidity of bodies and states vis-a-vis the power of financial markets and global capital.
George Soros (1998a and b) has recently analyzed some of the deficiencies of the global capitalist economy, particularly the erosion of social values and social cohesion in the face of the increasing dominance of anti-social market values. The dilemma is that markets are by nature indiscriminate and inclined to reduce everything -- including human beings, their labor and their reproductive capacity -- to the status of commodities, things that can be bought, sold, traded, and stolen. 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 current markets for human organs and tissues to supply a medical business driven by "supply and demand". The recent and rapid transfer of organ transplant technologies to countries in the East (China, Taiwan, and India ) and to the South ( especially Argentina, Chile, and Brazil) has created a global scarcity of viable organs that has initiated a movement of sick bodies in one direction and of "healthy" organs -- transported by commercial airlines in ordinary Styrofoam picnic coolers conveniently stored in overhead luggage compartments -- often in the reverse direction, creating a kind of "kula ring" of bodies and "spare" body parts.
What were once experimental procedures performed in a few advanced medical centers (most of them connected to academic institutions) have become common place surgeries throughout the world. Today, kidney transplantation is virtually universal, practiced in North and South America, Europe, Asia, and the Middle East. Survival rates for kidney transplant have increased markedly over the past decade, although these still vary by country, region, the quality and type of organ (living or cadaveric), and access to the anti-rejection drug, cyclosporine. In parts of the third world where morbidity rates from infection and hepatitis are higher, there is a preference for a living donor whose health status can be documented before the transplant operation. In Brazil, there is considerable resistance to accepting a "public" organ from an "anonymous" cadaver which may not have been properly screened.
In general, the flow of organs follows the modern routes of capital: from South to North, from third to first world, from poor to rich, from black and brown to white, and from female to male bodies. Religious prohibitions in one country or region can stimulate an "organs market" in more secular or pluralistic neighboring areas. Residents of the Gulf States (Kuwait, Saudi Arabia, Oman, United Arab Emirates) travel to India and Eastern Europe to obtain kidneys made scarce locally due to fundamentalist Islamic teachings that will in some areas allow organ transplantation (to save a life), but draw the line at organ donation. Japanese patients travel to North America for transplant surgery with organs retrieved from brain dead donors, a definition of death only recently and very reluctantly accepted in Japan. To this day heart transplantation is rarely performed in Japan and most kidney transplants rely on living, related donors (see Lock 1996, 1997; Ohnuki-Tierney 1994). For many years Japanese nationals have resorted to various intermediaries, sometimes with criminal connections 6, to locate donor hearts in other countries, including China (see Tsuyoshi Awaya , Testimony before the International Reltions Committee, US House of Representatives, June 4, 1998) and the United States.
Until the practice was condemned by the World Medical Association in 1994, patients from several Asian countries traveled to Taiwan to purchase organs harvested from executed prisoners. But the ban on the use of organs from executed prisoners in capitalist Taiwan merely opened up a similar practice in socialist China. The demand for hard currency by strapped governments has no fixed ideological or political boundaries.
Meanwhile, patients from Israel, which has its own well -developed, but under-used, transplantation centers (see S. Zev Kalifon 1995) travel elsewhere, to Eastern Europe where living kidney donors can be found, and to South Africa where the amenities in transplantation clinics in private hospitals can resemble four star hotels. Meanwhile, Turkey is emerging as a new and active site of illegal traffic in transplant organs with both living donors and recipients arriving from other countries for operations organized by illegal organs brokers. In all these transactions, a new profession of "organs brokers" ( like the notorious but elusive Dr. X who operates by fax, telephone, and e-mail out of a home office in southern California) are the essential actors.
Because of these unsavory events, Renee Fox and Judith Swazey (1990) have announced their departure from the field of organ transplantation after some forty years as sociologist ethnographers in the field. They have expressed their dismay at the "profanation" of organ transplantation over the past decade, especially the "excessive ardor" to prolong life indefinitely and the move toward financial incentives and "purchased" organs. More recently, Fox (1997: 253) expressed the hope that her decision would serve as a moral testimony against the perversions of a technology in which she had been a strong believer.
While cultural notions about the dignity of the body and of sovereign states pose some barriers to the global market in body parts, these ideas have proven to be fragile. In the west, theological and philosophical reservations gave way rather readily before the triumphant demands of advanced medicine and biotechnology. Donald Joralemon (1995: 335) has noted wryly that organ transplantation seems to be protected by a massive dose of cultural denial, an ideological equivalent of the powerful drug cyclosporine which prevents the individual body's rejection of a strange organ. This dose of denial is needed to overcome the social body's resistance to the "alien" idea of transplant and the new kinds of bodies and publics that it requires. No modern pope, beginning with Pius X11 has raised any moral objections to the requirements of transplant surgery. The Catholic Church decided over thirty years ago that the definition of deat -- unlike the definition of life -- should be left up to the doctors, paving the way for the acceptance of "brain stem" death.
While transplant surgery has been incorporated as a more or less routine" practice in the industrialized west, one can recapture some of the technology's "basic strangeness" by observing the effects of its expansion into new social , cultural, and economic settings. Wherever transplant surgery moves it challenges customary laws and traditional local practices bearing on the body, death, and social relations."Commonsense" notions of embodiment, relations of body parts to whole, and the treatment and disposal of the dying are consequently being reinvented throughout the world. Not only stock markets have crashed on the periphery in recent years -- so have long standing religious and cultural prohibitions.
Lawrence Cohen , who has worked in rural towns in various regions of India over the past decade, notes that in a very brief period 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. A decade ago when townspeople first heard through newspaper reports of kidney sales occurring in the cities of Bombay and Madras they responded with predictable alarm. Today, Cohen says, some of these same people now speak matter of factly about when it might be necessary to sell a "spare" organ. Cohen argues that it is not that every townsperson actually knows someone who has been tempted to sell a vital part of the self, but that the idea of the "commodified" kidney has permeated the social imaginary. today the "kidney" represents "Everyman's" last , economic resort. Today, writes Cohen (1998:4) "The kidney [stands] ...as the marker of one's economic horizon, one's ultimate collateral."
Some 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 neighbor is likely to respond. In 1998 Cohen encountered friends in Bernaris who were considering selling a kidney to raise money for a sister's dowry. In this instance, Cohen notes, "women flow in one direction and kidneys in the other" (ibid). And, the appearance of a new biomedical technology has reinforced a traditional practice , the dowry, that had been waning. With the appearance of new sources of capital, the dowry system is expanding, along with kidney sales, into areas where it had not been a traditional practice.
In the interior of Northeast Brazil , where I have been conducting ethnographic research for over a quarter of a century, in response to a kidney " market" that began to appear during the late 1970s, ordinary people have begun to view their matched organs as redundancies. Ads like the following began to appear in Brazilian newspapers, like this one published in the Diario de Pernambuco in 1981: " 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, a Sao Paulo journalist with whom I have been colloborating on this project, actually 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 were accumulating, and he did not even have the money to purchase the newspaper every day to see if there had been a response to his ad. He told Patarra: "I would do exactly as I said, and I have not regretted my offer. 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..."I am living through all sorts of crises 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. And after my bills were paid, I would invest what remains in the stock market."
In 1996 I interviewed a school teacher in the interior of Pernambuco who had been persuaded to donate a kidney to a distant male relation in exchange for a small compensation. Despite the payment Rosalva insisted that she had donated "from the heart" and out of pity for her cousin. "Besides", she added, "wouldn’t you feel obligated to give an organ of which you had two and the other had none?". But it was not so long ago that I had accompanied a small procession to the municipal graveyard in this same community for the ceremonial burial of an amputated foot. Religious and cultural sentiments about the sacredness and integrity of the body were still strong. Rosalva’s view, less than two decades later, of her body as a reservoir of duplicate parts was troubling.
A great many people -- not all of them wealthy -- have shown their willingness to travel great distances to secure a transplant using both legal and illegal channels even when survival rates in some of the more commercialized contexts is quite poor. For example, between 1983-1988, 131 patients from just three renal units in the United Arab Emirates and Oman traveled to India where they purchased, through local brokers, kidneys from living donors. The donors, mostly from urban shantytowns, were compensated between $2,000 and $3,000 for a kidney. News of an incipient "organs bazaars" in the slums of Bombay, Calcutta, and Madras appeared in Indian weeklies and in special reports by ABC and the BBC. It was not clear at the time how much of this reporting was to be trusted. But in the early 1990s scientific articles began to appear in The Lancet and Transplant Proceedings , reporting poor medical outcomes resulting from transplant with purchased kidneys from "donors" infected with hepatitis and HIV ( see Saalahudeen et al. 1990).
The first inklings of a commercial market in organs 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 some 2,000 kidney transplants with living donors were being performed each year in India, leading Prakash Chandra (1991) to refer to India as the " organs bazaar of the world." But the proponents of paid, living donors, such as Dr. K.C. Reddy (1990), a urologist with a thriving practice of kidney transplantation in Madras, argued that legalizing the buisness would eliminate the middle men who profit by exploiting paid donors. Reddy described the kidney market as a marriage bureau of sorts, bringing together desperately ill buyers and desperately poor sellers, each finding in the other a temporary truce against the respective wolf at their door.
The overt market in kidneys that catered largely to wealthy patients from the Middle East was forced underground following passage of a law in 1994 that criminalizes organ sales. But recent reports by human rights activists, journalists, and medical anthropologists, including Cohen and Das , indicate that the new law has produced in its wake an even larger domestic black market in kidneys, controlled by organized crime expanding out from the heroin trade (in some cases with the backing of local political leaders). In other areas of India the kidney "business " is controlled by the owners of "for profit" hospitals that cater to foreign and domestic patients able to pay tourist prices to occupy luxuriously equipped medical suites while awaiting the appearance of a living donor. Investigative reporters ( see Frontline December 26, 1997) found that a doctor-broker nexus in Bangalore and Madras continues to profit from kidney sales due to a loophole in the new law permits unrelated kidney "donation" following approval by local Medical Authorization Committees. Cohen and others report that 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, says Cohen, only the very rich can acquire an unrelated kidney. For in addition to paying the donor, the middle men, and the hospital, now they must bribe the Authorization Committee members. As for the kidney sellers, recruited by brokers who often 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 (1998) 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 of the bizarre effects of a global capitalism that seeks to turn everything into a commodity. And though fathers and brothers talk about selling kidneys to rescue dowry-less daughters or sisters, in fact most kidney "sellers" are women trying to rescue a husband, whether a "bad" spouse who has prejudiced the family by his drinking and unemployment or a "good" husband who has gotten trapped in the debt cycle. Underlying it is the logic of gender reciprocity: the husband "gives" his body in often servile and/or back-breaking labor, and the wife "gives " her body in a mutually life-saving medical procedure.
But the climate of rampant commercialism has produced rumors and allegations of organ theft in hospitals, similar to those frequently encountered in Brazil. During an international conference I organized in April 1996 at the University of California, Berkeley on the commerce in human organs, Veena Das told a National Public Radio reporter for the program, "Marketplace" the story of a young woman in Delhi whose stomach pains were diagnosed as a bladder stone requiring surgery. Later, the woman charged that the attending surgeon had used the "bladder stone" as a pretext to operate and remove one of her kidneys for sale to a third party. True or false -- and allegations like these are impossibly slippery because hospitals refuse to co-operate by opening their medical records to journalists or anthropologists -- such stories are believed by many poor people world-wide who avoid even the most necessary and routine operations performed at public hospitals.
China stands accused today of taking organs from executed prisoners for sale in transplant surgeries sought by mostly foreign patients. Human Rights Watch/Asia (1994) and the independent Laogai Research Foundation (January 1995) have published reports documenting through available statistics and allegations by Chinese informants, some of them doctors or prison guards, that the Chinese state systematically takes kidneys, cornea, liver tissue and heart valves from its executed prisoners. While some of these organs are given to reward politically well connected Chinese, others are sold to transplant patients from Hong Kong, Taiwan, Singapore and other mostly Asian nations who will pay as much as $30,000 for an organ. Public officials in China have denied the allegations, but they refuse to allow independent observers to be present at executions or to review transplant medical records. But as early as October 1984, the Chinese government published a directive stating that "the use of corpses or organs of executed criminals must be kept strictly secret... to avoid negative repercussions" (cited in Human Rights Watch/Asia 1994:7).
Robin Monroe, the author of the Human Rights Watch/Asia report (1994) told the Bellagio Task Force that organs were taken from some 2,000 executed prisoners each year. And, worse, that number was growing as the list of capital crimes in China has been expanded to accommodate the growing demand for organs. These allegations are supported an Amnesty International report claiming that a new "strike hard" anti-crime campaign in China has sharply increased the number of people executed, among them thieves and tax cheaters. In 1996 at least 6,100 death sentences were handed out and at least 4,367 confirmed executions took place.
Following these reports, David Rothman (1998) visited several 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 units. While the surgeons and hospital administrators readily answered technical questions, they refused to respond to questions regarding the sources of transplant organs, the costs for organs and surgery, or the numbers of foreign patients who receive transplants at Chinese medical institutions. And Rothman returned from China convinced that what lies behind the Chinese anti-crime campaign is a "thriving medical business that relies on prisoners' organs for raw materials". The Chinese state is sponsoring, he says, an "insatiable killing machine" driven by the demand for organs.
Tsuyoshi Awaya, another Bellagio Task Force member, has made five research trips to China since 1995 to study the dilemma of organs harvesting in Chinese prisons. In his most recent trip in 1997 Awaya was accompanied by a Japanese organs broker and several of his patients, all of whom returned to Japan with a new kidney. All the patients knew that their kidneys were taken from executed prisoners but this information did not influence their decision to go through with the transplants. In his statements to the International Relations Committee of the United States House of Representatiives (June 4, 1998) Awaya testified that a great many Japanese patients go overseas for organ transplants. Those who cannot afford going to the West, go to one of several "developing" countries in Asia, including China where "purchased" organs from executed prisoners are part of the "package" of hospital services for a transplant operation. Since prisoners are not "paid" for their "donation", "organs sales" per se do not exist in China. However, taking prisoners' organs without consent could be seen as a form of body theft (Awaya 1998: 50; see also Awaya 1996).
Finally, Dr. Chun Jean Lee, chief transplant surgeon at the National Taiwan University Medical Center , also a member of the Bellagio Task Force, is convinced that the allegations against China are true because the practice of using organs from executed prisoners was fairly widespread in Asian countries. He told the Task Force that until international human rights organizations put pressure on his institution, his own transplant unit in Taiwan had used prisons to supply the organs they needed. China has held out, Lee suggests, because of the desperate need for foreign dollars, and because there is less concern in Asia for issues of "informed consent." In some Asian nations the use of prisoner's organs is seen as a social good, a form of public service, and an opportunity to redeem the family's honor.
Of course, not all Chinese citizens embrace this collectivist ethos, of course, and human rights activists, such as Harry Wu , the controversial director of the Logai Foundation in California, see the practice as a gross violation of human rights. At the 1996 Berkeley conference on traffic in human organs, 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 scenario brain death followed, rather than preceded, the harvesting of the prisoner's vital organs. Then, he introduced Mr. Lin , a recent Chinese immigrant to California, who said that shortly before leaving China he visited a friend at a medical center in Shanghai. In the bed next to his friend was a politically well situated professional who told Lin that he was waiting for a kidney transplant later that day. The kidney, he explained, would arrive as soon as a prisoner was executed that morning. The prisoner would be intubated and prepared for the subsequent surgery by doctors present for the execution. Minutes later the man would be shot in the head, the doctors would extract his kidneys and rush them to the hospital where two transplant surgery teams would be assembled and waiting, one for each kidney.
Wu’s allegations were bolstered following a sting operation 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 to purchase them for transplant surgery.(Mail and Guardian 2/27/1998; San Jose Mercury News 3/19/98; New York Times 2/24/98). Posing as a prospective customer, Wu produced a video tape of the two men, Wang Chenyong and Fu Xingqi, in a Manhattan hotel room offering to sell "quality organs" from a dependable source: some 200 prisoners executed on Hainan Island each year. A pair of cornea would cost an exorbitant $ 5,000. Wang guaranteed this commitment by producing documents indicating that he had been deputy chief of criminal prosecutions in that prison. Following their arrest by FBI agents the men were charged with conspiring to sell human organs but the trial has been delayed because of concerns over the extent to which the defendants were "entrapped" in the case (New York Times , March 2, 1999:A19). As a futher fall out of this story, the German company, Fresenius Medical Care, based outside Frankfurt, announced that it was ending its half-interest in a kidney dialysis unit (next to a transplant clinic) in Guangzhou, China, noting the company's suspicions that foreign patients to the clinic were receiving "kidneys harvested from executed Chinese criminals." (New York Times 3/7/98).
While members of the Bellagio Task Force agreed on the human rights violations implicit in the use of executed prisoners' organs, they found the issue of organ sales more complex. Those opposing the idea of sales expressed concerns about social justice and equity. Would those forced by circumstnace to sell a kidney be in a roughly equivalent position to obtain dialysis or transplant surgery should their remaining kidney fail at a later date? Others noted the negative effects of organ sales on family and marital relations , gender relations, and community life. Others worried about the coarsening of medical sensibilities in the casual disregard by doctotrs of the primary ethical mandate to do no harm to the bodies in their care, including their donor-patients.
Those favoring "regulated sales" argued against social science "paternalism" and on behalf of individual rights, bodily autonomy, and the "right to sell" one's organs, tissues,blood or other body products , an argument that has gained currency in some scholarly circles (see Daar 1992; Kervorkian 1992; Marshall, Thomas and Daar 1996; Radcliffe- Richards, et al. 1998). Abdullah Daar , the most vocal supporter of "contract theory" on the Task Force, argues from a pragmatic position that regulation rather than prohibition or moral condemnation is the more appropraite response to a practice that is already widely established in many parts of the world, not only in India. What is needed, he argues, is rigorous oversight and the adoption of a "donors bill of rights" to inform and protect potential organ sellers.
Some transplant surgeons on the Task Force asked why kidneys were treated differently from other body parts that are sold commercially including skin, cornea, bones, bone marrow, cardiac valves, blood vessels, and blood. The exception was based (they suggest) on the layman's natural aversion to the idea of tampering with internal organs, a taboo which doctors overcome in their first days of medical training. Influenced by Daar's "rational choice" position, The Bellagio Task Force Report (1996: 2741 ) concluded that the "sale of body parts is already so widespread that it is not self-evident why solid organs should be excluded [from commercialization]. In many countries, blood, sperm and ova are sold...On what grounds may blood or bone be traded on the open market, but not cadaveric kidneys?" But the social scientists serving on the Task Force, remain profoundly critical of bio-ethical arguments based on Euro-American notions of contract and individual 'choice'. They are mindful of the social and economic contexts that make the 'choice' to sell a kidney in an urban slum of Calcutta or in a Brazilian favela anything but a 'free' and 'autonomous' one. Consent is problematic with "the executioner" -- whether on death row or the wolves at the door of the slum resident -- looking over one's shoulder. A market price on body parts -- even a fair one -- exploits the desperation of the poor, turning their suffering into an opportunity, as Veena Das ( in press) so aptly puts it . And, the argument for "regulation" is out of touch with the social and medical realities operating in many parts of the world but especially in second and third world nations. The medical institutions created to "monitor" organs harvesting and distribution are often dysfunctional, corrupt, or compromised by the power of organs markets and the impunity of the organs brokers, whether "doctors or body mafia.
In responding to Abdallah Daar on the question of "regulating" organ sales during the Berkeley Conference in 1996, Veena Das countered the neo-liberal defense of individual rights to sell by noting that in all contracts there are certain exclusions such as in family law, labor law, and anti-trust law. Anything that would damage social or community relations is generally excluded from contract theory. Asking the law to negotiate a fair price for a live human kidney is, Das argued, goes agaianst everything that contract theory stands for. When concepts such as individual agency and autonomy are invoked in defending the "right" to sell a spare organ, anthropologists might suggest that certain "living" things are not inalienable from the person or legitimate candidates for commodification. The removal of new-renewable organs leads to irreparable personal injury, an act in which medical practitioners, given their ethical standards, should not be asked to participate.
While to many surgeons an organ is a thing, an expensive " object " of health, a critical anthropologist like Veena Das must ask: "Just what is an organ?" Is the transplant surgeon's kidney seen as a redundancy, a 'spare part', equivalent to the Indian textile worker's kidney seen as 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, and neither is equivalent to the kidney seen as that precious "gift of life" anxiously sought by the desperate, end stage renal transplant patient. And, while bio-ethicists begin their equerries from an unexamined premise of the body (and its organs) as the unique "property" of the individual, anthropologists must intrude with our cautionary cultural relativism. Are those living under conditions of social insecurity and economic abandonment on the periphery of the new world order really the "owners" of their bodies? This seemingly self-evident first premise of Western bio-ethics would not be shared by peasants and shantytown dwellers in many parts of the third world, such as the chronically hungry sugar plantation workers in Northeast Brazil who frequently state with equally strong and self-evident conviction: "We are not even the owners of our own bodies" ( see Scheper-Hughes 1992, chapter 6).
Nonetheless, arguments for the commercialization of organs are gaining ground in the US and elsewhere. Llyod R. Cohen (1993) has proposed a "futures market" in cadaveric organs that would operate through advance contracts offered to the general public. If the organs are successfully transplanted at death, the contract would provide a substantial sum -- $5,000 per organ used has been suggested -- to the deceased person's designee. While gifting can always be expected among family members, financial inducements might be necessary, Cohen argues, to provide organs for strangers. The American Medical Association is considering various proposals that would enable people to bequeath organs to their own heirs or to charity for a price. In a telephone interview in 1996 with Dr. Charles Plows, Chair of the AMA's Committee on Ethical and Judicial Affairs , Plows said he agreeed in principle with Cohen's proposal. Everyone, he said, except the organ donor, benefits from the transplant transaction. So, at present the AMA is exploring several options. One is to set a fixed price per organ. Another is to allow market forces -- supply and demand -- establish the price. In all, the current amalgam of positions points to the constitution of new desires and needs, new social ties, social contracts, and new conceptions of justice and ethics constructed around the medical and mercantile "ends " and uses of the body.
The " demand" for human organs -- and for wealthy transplant patients to purchase these -- is driven by the medical discourse on scarcity. With similarities to the international market in child adoption (see Scheper-Hughes 1990; Raymond 1989) those looking for transplant organs -- both surgeons and their patients -- are often so single minded they are 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 questionable and even illegal practices are used to obtain the desired commodity, infant or kidney.
The specter of long transplant "waiting lists" -- often only virtual lists with little material basis in reality -- has motivated physicians, hospital administrators, government officials, and various intermediaries to engage in questionable tactics for procuring organs. The results are: blatant commercialism along side "compensated gifting"; doctors acting as brokers; and, fierce competition between public and private hospitals for patients of means. At its worst the scramble for organs and tissues has lead to gross human rights violations in intensive care units and in public morgues. But 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.
Several keywords in organ transplantation require a radical deconstruction, among them : "scarcity" , "need", "donation", "gift", "bond" "life", "death " , supply," and "demand". Organ 'scarcity' , for example, is invoked like a mantra in reference to the long "waiting lists" of expectant "candidates" for various transplant surgeries (see Randall 1991). In the U.S. alone , 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 the technicians of transplant surgery, represents an "artificial" need, one that can never be satisfied, for underlying it is the unprecedented possibility of extending life indefinitely with the organs of the other. I refer, with no disrespect intended to those now patiently waiting on organ transplant lists, to the age-old denial and refusal of death that contributes to what Ivan Illich (1976) called "medical nemesis".
Meanwhile, the so-called "gift of life" that is extended to terminal heart , lung, and liver patients is sometimes something other than the commonsense notion of "a life". The "survival" rates of a great many transplant patients often conceals the real living-in-death -- the weeks and months of extended suffering -- that precedes actual death 7. Transplant patients today are increasingly warned that they are not exchanging a death sentence for a new life, but rather that they are exchanging one mortal, chronic disease for another. " I tell all my heart transplant patients", said a South African transplant coordinator, " that after transplant they will have a condition similar to AIDS, and that in all probability they will die of an opportunistic infection resulting from the artificial suppression of their immune system". While this statement is an exaggeration, most transplant surgeons I interviewed accepted its basic premise. For example, Dr. N. of South Africa told of major depressions among his large sample of post-operative heart transplant patients, some leading to suicides following otherwise "excellent" transplants. For these and other complex reasons, Dr. N., a protoge of Dr. Christian Bernard, had decided to give up the practice of heart transplant surgery for other "less radical" surgical interventions.
The medical discourse on scarcity has produced what Margaret Lock (1996, 1997) has called "rapacious demands". Japanese sociologist, Tsuyoshi Awaya (1994) goes even further, referring to transplant surgery a form of "neo-cannibalism" . "We are now eyeing each other's bodies greedily", he says," as a source of detachable spare parts with which to extend our lives". While unwilling to condemn this "human revolution" which he sees as continuous with, indeed the final flowering of, our early human evolutionary history through which humans have colonized lands, animals, other peoples, and finally, our own bodies, Professor Awaya wants organ donors and recipients to recognize the kind of social exchange in which they are engaged. Through modern transplant technology the "biosociality" ( see Rabinow 1996) of a few is made possible through the literal incorporation of the body parts of those who often have no other social destiny than premature death (Scheper-Hughes 1992; Castel 1991; Biehl 1998, 1999 ).
The discourse on "scarcity" conceals the over-production of "excess" and "wasted" organs that daily end up in hospital dumpsters throughout those parts of the world where the necessary transplant infrastructure is lacking outside major cities. But the ill will and competitiveness of hospital workers and medical professionals also contributes to the production of organ "wastage". Transplant specialists whom Cohen and I interviewed in South Africa , India, and Brazil often scoffed at the notion of "organ scarcity" given the appallingly high rates of youth mortality, accidental deaths, homicides, and transport deaths that produce a super-abundance of young, healthy "cadavers". But these precious commodities are routinely wasted in the absence of trained "organ capture" teams in hospital emergency rooms and intensive care units, rapid transportation, and basic equipment to preserve "heart-beating" cadavers and their organs. And "organ scarcity" is reproduced in the increasing competition between public and private hospitals and their "competing" teams of transplant surgeons who, in the words of one South African transplant co-ordinator, " order their assistants to dispose of perfectly good organs rather than allow the competition to get their hands on them". The real scarcity, as Cohen (1998) notes, is not of organs but of transplant patients of sufficient means to pay for the expensive surgery. In India, Brazil, and even in South Africa there are a superabundance of poor people willing to sell a kidney for a pittance
And, while "high quality" organs and tissues are scarce, there are plenty of what Dr. S., the director of an Eye Bank in Sao Paulo, referred to as usable "left-overs" floating around the world. Brazil, he said, has long been a favored "dumping ground" for surplus inventories from the first world , including old, poor quality or damaged tissues and organs. In extensive interviews with Dr. S. in 1997 and, again, in 1998, he complained of a U.S. based program which routinely sent surplus cornea to his Center. "Obviously," he said, "these are not the best cornea. The Americans will only send us what they have already rejected for themselves."
In Cape Town, South Africa, Mrs. R., the director of her country's largest eye bank, an independent foundation, normally keeps a dozen or more "post-dated" cadaver eyes in her organization's refrigerator. These "poor quality" "cornea" (but , in fact, they were eyes ) would not be used, she said, for transplantation anywhere in South Africa. They could be sent to less fortunate, neighboring countries that requested them. Nearby, in his office at an academic hospital center, Dr. B, a young heart transplant surgeon tried to retrieve for me an e-mail message from a "human organs broker" living in southern California. Dr. X. promises his e-mail based clients throughout the world the delivery of "fresh organs" anywhere within 30 days of placing an electronic mail order. [My efforts to reach this North American broker, who is currently under FBI investigation have failed]. Because commercial exchanges have also contributed to the transfer of transplantation capabilities to previously under served areas of the world, transplant specialists I interviewed in Brazil and South Africa are deeply ambivalent about them. Surgeons in Sao Paulo, Brazil told of a controversial plan proposed some years ago by Dr. Thomas Starzl of the University of Pittsburgh Medical School., a case widely covered in the American and Brazilian press. Starzl proposed an agreement with the Brazilian Association of Organ Transplantation whereby his institution would exchange "state of art" transplant expertise for a regular supply of "surplus" Brazilian human livers. Starzl described the proposal as an important first step in establishing an "international exchange" of organs for transplant. Since Brazil had not yet at that time developed a liver transplant program, it had a "surplus" of livers that could help meet the needs of American transplant patients. In exchange for those "excess" livers , Starzl and his colleagues would help surgeons at the major public medical center in Sao Paulo develop their own liver transplant program. The public outcry in Brazil against this ghoulish exchange fueled in large part by the Brazilian media (see Isto E Senhor, 11 de dezembro, 1991; Folha de Sao Paulo, December 1, 1991,4:1) interrupted the agreement.
Although Brazilian livers were not delivered to Pittsburgh, many other "third world" organs and tissues have found their way to the U.S. over the past decades. In the files of an activist political leader in Sao Paulo I found results of a police investigation of the local Medical-Legal Institute (police morgue) indicating that several thousand pituitary glands had been taken (without consent) from poor people's cadavers and sold to private medical firms in the U.S. where they were used in the production of growth hormones. Similarly, during the late military dictatorship years, an anatomy professor at the Federal University of Pernambuco in Recife was prosecuted for having sold thousands of inner ear parts taken from pauper cadavers to NASA for their space training and research programs.
Even today such practices continue. Abbokinase, a widely used clot-busting drug processed by Bio Whittaker company in Walkersville, Maryland and produced for sale by Abbott Laboratories purchases materials derived from kidneys taken from deceased newborns in a hospital from Cali, Colombia without any evidence of consent, informed or otherwise, from the parents (Wolfe 1999). In South Africa, the director of an experimental research science unit of a large public medical school showed me official documents approving the transfer of human heart valves taken (without consent) from the bodies of the poor in the police mortuary and shipped "for handling costs" to medical centers in Germany and Austria. These permissible fees , I was told, helped defray the unit's research program in the face of the austerities and downsizing of advanced medical research facilities in the new South Africa.
But a great many "ordinary" citizens in India, South Africa, and Brazil protest such commercial exchanges as a form of global (South-to-North )"bio-piracy" (see Shiva 1997). Increasingly, one hears demands to "nationalize" dead bodies, tissues, and body parts to protect them from global exploitation. The mere idea of "Brazilian livers" going to American transplant patients gives Dr. O., a Brazilian surgeon , "an attack of spleen". A white South African transplant co-ordinator attached to a large private hospital, criticised the policy that allowed many wealthy foreigners -- especially "ex-colonials" from Botswana and Nimibia -- to come to South Africa in search of organs and transplant surgery. " I can’t stop them from coming to this hospital", she said, " but I tell them that 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 myself that the organ gets tossed into a bucket". The co-ordinator defended her harsh remarks as following the directives of Dr. N.C. Dlamini Zuma, South Africa’s controversial Minister of Health to give preferential treatment , as it were, to South Africa's long excluded Black majority. Such nationalist medical sentiments are not shared by hospital administrators in South Africa for whom other considerations -- especially the ability of foreign patients to pay twice or more what the State or private insurance companies in South Africa will allow for the surgery -- are often uppermost. In one academic and public hospital’s kidney transplant unit, that I visited in 1998, a steady stream of paying foreigners from Mauritius was largely responsible for keeping the beleagured unit solvent, following Dr. Zuma’s budget cuts and reallocation of state funds toward primary care medicine.
Death is, of course, another "keyword" in transplantation.
The possibilitiy of extending life through transplantation were facilitated by medical definitions of irreversible coma ( at the end of the 1950s) and of "brain stem death" 8 (at the end of the 1960s ) when death became an epiphenomenon of transplantation. Here , one sees the awesome power of the life sciences and medical technology over modern states. In the age of transplant surgery, life and death are replaced with surrogates, proxies, and facsimiles and ordinary people have relinquished the power to determine the moment of death which now requires technical and legal expertise beyond their ability ( see Agambem 1998:165).
Additionally, the new bio-technologies have thrown conventional, western thinking about ownership of the "dead" body in relation to the state into doubt. Are Enlightenment notions of the body as the unique property of the individual still viable in light of the many competing claims on human tissues and genetic material by the state and by commercial pharmaceutical and biotechnology research companies ( see Rabinow 1996; Curran 1991; Neves 1993)? Can earlier Enlightenment view exist in the presence of the claims of modern states, including Spain, Austria, Germany, and now, Brazil, to complete authority over the disposal of bodies , organs, and tissues at death? What kind of state assumes rights both to the bodies of those presumed to be dead and of those presumed to give consent to organ harvesting ? (see Shiva 1997; Berlinger and Garrafa 1996) Since the passage of the new compulsory donation law in Brazil, one hears angry references to the dead person as "the state's body." Certainly, both the family and the Church have lost control over the dead body 9.
While most doctors have worked through their own doubts about the new criteria of brain death, a great many ordinary people still resist it. Brain stem death is not an intuitive or commonsense perception; it is far from obvious to family members, nursing staff, and to some medical specialists. The language of brain death is replete with indeterminacy and contradiction. Does brain death anticipate somatic death? Should we call it , as Agambem does, "the death that precedes death"? (1998: 163 ). What is the relation between the time of technically declared brain" death" and the "deadline" for harvesting usable organs? A 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 liminal state somewhere between life and death so that we can harvest the organs to save another person's life?' Then, it would be ethical. Then it would bean honest transaction."
Dr. Cicero Galli Coimbra, a faculty member of the Department of Neurology and Neurosurgery at the Federal University of Sao Paulo where he also directs the Laboratorio de Neurologia Experimental , has written several scientific papers (Coimbra, n.d.) questioning the validity, thirty years later, of the criteria established thirty years ago by the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death (1968). During interviews with him and his staff at his laboratory in 1998, Coimbra reiterated his claims, backed by his own research and his clinical work, that brain stem death, as currently defined, includes a number of patients whose lives could be saved. Moreover, Coimbra claims that "apnea testing" as widely used to determine brain stem death actually induces -- rather than diagnoses -- irreversible brain damage. " All the so-called confirmatory tests", he said, " reflect nothing more than the detrimental effects of doctor -induced,intercranial circulatory arrest." Dr. Coimbra, who refuses anonymity, is a major critic of Brazil's new compulsory donation law which he sees as an assault on his clinical population of brain traumatized patients.
The body may be defined as "brain dead" for one purpose -- organ retrieval -- while still perceived as " alive" for other purposes including family ties, affections, religious beliefs, or notions of individual dignity 10. Even when somatic death is obvious to family members and loved ones, the perceptual shift from the dead body -- the "recently departed", the "beloved deceased" , " our dearly departed brother" -- to the anonymous and de-personalized cadaver ( as usable object and reservoir of spare parts) may take more than the pressured "technical time" allowed to harvest organs usable for transplantation. But even as the retrieval time is extended with new conservation methods, the confusion and doubt of family members may increase.
The "gift of life" demands a parallel gift -- the "gift of death", the giving over of life before its normally recognized time. In the language of anthropology brain stem death is social, not biological, death. To Coimbra and some of his colleagues, brain stem death has created a population of living dead people. In a great many industrialized societies, including Japan, Brazil, and the U.S. (see Kolata 1995) brain stem death has yet to be embraced as a "commonsense" view of death, let alone in countries where transplant surgery is still rare. And yet, the public unrest in Brazil following passage of the country's new "presumed consent" law in 1997 (see below) is an exception to the general rule of public apathy toward the state's assumption of control over the dead body.
Transplant surgeons often explain the "problem" of popular resistance to brain stem death, organ harvesting, and transplantation itself in terms of a cultural time lag that prevents "ordinary people" from accepting the changes brought about by new medical technologies. While the postmodern state has certainly expanded its control over bodies and over death (see Agamben 1998: 119-125) through recent "advances" in biotechnology, genetics, and biomedicine, there are many antecedents and genealogies to consider. The Comaroffs (1992), for example, showed the extent to which British colonial regimes in Africa relied on medical practices to discipline and "civilize" newly colonized peoples. The African colonies became "laboratories" for experiments with medical sciences and public health practices. And, the medical experiments under Nazi National Socialism produced, through applied eugenics and death sentencing, a concentration camp population of walking cadavers , of "living dead people" ( Agambem 1998: 136) whose lives could be taken without explanation or justification. Agambem dares to compare these slave-bodies to the "living dead" candidates for organ donation held hostage to the machine in today's intensive care units.
The idea of "organ scarcity has historical antecedents in the long-standing "shortage" of human bodies and human body parts for autopsy, medical training, and medical experimentation (see Majno 1969; Foucault 1975; Richardson 1989,1996). Who and what gets defined as "waste" in any given society often has bearing on the lives of the poorest in countries with a ready surplus of unidentified, unclaimed pauper bodies, as in Brazil (see Scheper-Hughes 1992, 1996; Biehl 1998), South Africa (Lerer 1996) and India. In Europe, during the 16th, 17th, and 18th centuries, the corpses of gallows prisoners were offered to barbers and surgeons to dispose with as they wished. "Criminal" bodies were required then, just as they are now, for "scientific" and medical reasons". In Brazil as in France (Laqueur 1983) during early phases of modernity paupers had no autonomy at death and their bodies could be confiscated from poor houses and work houses and sold to medical students and to hospitals. Because the body was considered part of the estate of the dead man and could be used to cover outstanding debts, the bodies of paupers were often left unclaimed by relatives to be used for medical research and education. Indeed, there is a long ancestry to medical claims on "surplus" bodies. To this day many rural people in Northeast Brazil fear medicine and the state, imagining that almost anything can be done to them either before or at the hour of their deaths. Those fears -- once specific to the rural and shantytown poor -- have spread today to working class Brazilians who are united in their opposition to Brazil's universal donation law, fearing that it will be used against them and to serve the needs of more affluent citizens. Such fears, we have learned, are not entirely groundless.
The poor and disadvantaged populations of the world have not remained silent in the face of threats and assaults to their bodily integrity, security, and dignity. For those living in urban shantytowns and hillside favelas, possessing little or no "symbolic capital" , the circulation of body stealing and organ theft rumors allowed people to announce their fears that "something is gravely amiss". The organ rumors warned of the existence and dangerous proximity of markets in bodies and body parts. As Veena Das (1998:185) has noted there is a long history in radical social science on the role of rumor in mobilizing crowds. The subaltern school has seen in rumors a special form of communication among the socially dispossessed. Guha ( 1983: 256, 201, cited by Das: 186) identified various features of rumor, including "its capacity to build solidarity, and the overwhelming urge it prompts in listeners to pass it on to others....the performative power of [rumor] circulation results in its continuous spreading, an almost uncontrollable impulse to pass it on to another person".
The latest version of the " organ stealing rumor " seems to have begun in Brazil or Guatemala in the 1980s and, indeed, spread from there like wildfire to other, similar political contexts (see Scheper-Hughes 1996). The South African variants, are so different, however (see below) they should be considered independent creations. I first heard the rumor when it was circulating in the shantytowns of Northeast Brazil in the 1980s. It warned of child kidnapping and body stealing by "medical agents" from the United States and Japan who were said to be seeking a fresh supply of human organs for transplant surgeries in the first world. Shantytown residents reported multiple sightings of large blue and yellow combi-vans 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 expressing the chronic "state of emergency" experienced by desperately poor people living on the margins of the newly emerging global economy. I noted that the rumors coincided with a covert "war" against mostly black and semi-abandoned street children in urban Brazil ( see Scheper-Hughes and Hoffman 1998) and with a booming market in international adoptions (see Scheper-Hughes 1991). The rumors confused the market in "spare babies" for international adoption with the market in "spare parts" for transplant surgery. Poor and semi-literate parents, tricked or intimidated into surrendering their babies for domestic and/or international adoption, imagined that their babies were wanted as fodder for transplant surgery. In the midst of co-exiting "black markets" for organs and babies, the rumor condensed them into a single frightening story.
It is the task of the anthropologists, working in such murky realms, to disentangle rumors and the uncanny from from the realities of everyday life which are often horrific enough. In the following analysis I am not suggesting that all rumors and urban legends about body stealing and organ theft can be reduced to specific historical facts. These rumors are part of a universal class of popular culture dating back to at least Medieval Europe (see Dundes 1991 ), and they serve multiple ends. But the current spate of organ stealing rumors seem to constitute what James Scott (1985 ) has called a classic " weapon of the weak". The rumors have shown their ability to challenge and interrupt the designs of medicine and the state. They have, for example, contributed to a climate of "civil" resistance toward "compulsory" organ donation in Brazil and they caused voluntary organ donations to drop precipitously in Argentina in 1980s in the wake of organ stealing rumors there (Cantarovitch 1990). The organ-theft rumors in addition to media reports of rampant commercialism in the procurement of organs have contributed to a growing "backlash" against transplant ethics and to a sense of demoralization among some transplant surgeons themselves.
Dr.X, a heart transplant surgeon in Cape Town, South Africa said during an interview in February 1998 that he had become very "disheartened" about his profession’s decline in prestige and popular confidence: "Organ transplantation has moved from an era back in 1967 when the public attitude was very different ...People then spoke about organ donation as that fantastic gift. Our first organ donor, Denise Dawer, and her family, were very much hallowed here; they were honored for what they did. Today, organ donation has lost its luster. The rumors of organ stealing are just a part of it. The families of potential donors throughout the world have been put under a lot more pressure. And there have been some unfortunate incidents. So we’ve begun to experience a sea of backlash. In Europe there is a new resistance toward the state’s demand to donate. Suddenly, new objections are being raised. The Lutheran Church in Germany has started to question the idea of brain death, long after it was generally accepted there. And so, we are seeing a drop of about 20% in organ donations in Europe, most acutely in Germany. And what happens in Europe has repercussions for South Africa".
It is important to note the timing and the geo-political mapping of these organ theft rumors. While blood libel legends and body snatching rumors have appeared at various historical periods, the current generation of rumors arose and spread in the 1980s within specific political contexts. They followed the recent history of military regimes, police states, civil wars, and " dirty wars" in which abductions, "disappearances", mutilations, and deaths in detention and under strange circumstances were commonplace. During the military regimes of the 1970s and 1980s in Brazil , Argentina and Chile the state launched a series of violent attacks on certain classes of sub-citizens -- subversives, Jewish intellectuals, journalists, university students , labor leaders, and writers and other social critics whose bodies, in addition to the usual tortures, were mined for their reproductive capacities and sometimes even for their organs to service the needs of super-citizens, especially elite military families.
During the Argentine ‘Dirty War" (1976 to 1982) infants and small children of imprisoned dissidents were kidnapped and given to reward loyal, childless military families (see Suarez-Orozco 1987). Older children were abducted by security officers, brutalized in detention, and then returned ( politically "transformed") to their relatives. Other children of suspected subversives were tortured in front of their parents and some died in prison. These forms of state-level "body snatching" were justified in terms of "saving" Argentina's innocent children from the "germ" of Communism. Later, revelations of an illegal market in blood, cornea and organs taken from "executed" political prisoners in Argentina appeared in the British Medical Journal (Chaudhary 1992). Between 1976 and 1991 some 1,321 patients died under mysterious circumstances and another 1,400 patients "disappeared" at the state mental asylum of Montes de Oca, not far from Buenos Aires where many "insane" political dissidents were sent. Years later, when some of the bodies were exhumed, it was found that their eyes and other body parts had been removed.
Despite these grotesque political realities, Felix Cantarovitch (1990) reporting from the Ministry of Health in Buenos Aires, complained in a special issue of Transplantation Proceedings: "In Argentina between 1984 and 1987 a persistent rumor circulated about child kidnapping. The rumor was extremely troublesome because of its persistence sustained by the exaggerated press that has always been a powerful tool to attract attention of people about the matter. In November 1987 the Secretary of Health gathered the most important authorities of justice, police, medical associations and also members of Parliament with the purpose of determining the truth. As a result it was stated that all the rumors and comments made by the press were completely spurious."
Similarly, in Brazil, during the military years, adults and children were kidnapped , and now it appears that their "organs" were sometimes kidnapped and "disappeared" as well. Organ transplant surgeries and organ sales reached a peak in Brazil in the late 1970s during the presidency of General Figueiredo. According to my well placed sources, during the late military dictatorship period , a covert traffic in bodies, organs, and tissues taken from the despised social and political classes was flagrant and supported by the military state. A senior physician attached to large academic hospital in Brazil said that the commerce in organs there in the late 1970s was rampant and "quasi-legal". Surgeons like himself, he charged, were ordered to produce quotas of "quality" organs and they were protected from any legal actions by police cover-ups. "The transplants teams in [X and Y ] hospitals were real bandits after money. They were totally organ-crazy. The transplant team of hospital [Y ] would transport freshly procured organs by ambulance from one region to the next via Super Highway Dutra. The ambulance was accompanied by a full military police escort, so that the organs would arrive quickly and safely."
Sometimes, Dr. X. continued, the organs were gotten by criminal means. He told of surreal medical scenarios in which doctors and transplant teams met their quotas by "inducing" symptoms of brain death in seriously ill patients. The donors, he said, were the normal " suspects" -- people from the lowest classes and from families unable to defend them. The doctors would apply injections of strong barbiturates after which they would call on two other unsuspecting doctors to testify, according to the established protocols, that the criteria for brain death had been met and that the organs could be harvested. Because of this history of past abuses by some of his own colleagues, Dr. X adamantly opposes Brazil’s law of presumed consent, calling it a law against the poor. " It is not the organs of the super-citizen which will disappear, but those of people without any resources."
Similar allegations of body tampering and organ theft against doctors working in hospitals and in police mortuaries in South Africa during the late apartheid years when the country was plunged into a civil war surfaced during the hearings of the South African Truth and Reconciliation Commission (see below). In these "stranger than fiction" accounts we can begin to see some material basis for the ‘epidemics’ of organ stealing rumors. They surfaced at a time when the military in each country believed that they could do as they pleased to the bodies, organs, and progeny of its sub-citizens, those people perceived as social and political "waste".
In Argentina, Brazil, and Guatemala the organ stealing rumors surfaced during or soon after the democratization process was initiated and in the wake of human rights reports such as Nunca Mas in Argentina and Brazil Nunca Mas. They appeared during a time when ordinary people became aware of the magnitude of the atrocities practiced by the state and its military and medical officials. Insofar as the poor of urban shantytowns are rarely called upon to speak before official truth commissions, the body theft rumors may be seen as a surrogate form of political witnessing. The rumors participated in the spirit of human rights testifying to human suffering on the margins of "the official story" .
In all, the body and organ stealing rumors of the 1980s and 1990s were at the very least metaphorically true, operating by means of symbolic substitutions. The rumors expressed the chronic "state of emergency" (see Taussig, 1992, citing Benjamin) of subalterns and sub-citizens living in a negative zone of existence where lives and bodies are experienced as a constant crisis of presence (hunger, sickness, injury) on the one hand, and as a crisis of absence and disappearance on the other. The rumors spoke of the ontological insecurity of poor people "to whom almost anything could be done". They reflected the everyday threats to bodily security, urban violence, police terror, social anarchy, theft , loss, and fragmentation. Many of the poor imagined , with some reason, that autopsies were performed to harvest usable tissues and body parts from paupers whose bodies had reverted to the state: "Little people like ourselves are worth more dead than alive."
Recently, new varients of the body parts rumor , originating in the impoverished periphery of the global economic order , have migrated to the industrialized North where they circulate among affluent people through e-mail chain letters, despite the efforts of an organized U.S. government disinformation campaign to kill it ( see USIA 1994). Indeed, a great many people in the world today are uneasy about the nature of the beast that medical technology has released in the name of transplant surgery (see White 1994).
But in our "rational", secular world rumors are one (discredited) thing, while scientific reports in medical journals are quite another (credited) thing. In the late 1980s the two narratives began to converge as dozens of articles published in The Lancet, Transplantation Proceedings, Journal of Health, Politics, Policy and Law, cited evidence of an illegal commerce and black-market in human organs. Indeed, urban legends and rumors, like metaphors, do sometimes harden into ethnographic "facts".
Finally, in 1996, I decided to track down the strange rumors to their most obvious, and yet least studied, source: routine practices of organ procurement for transplant surgery (see Scheper-Hughes 1998). But as soon as I abandoned more symbolic analyses for practical and material explanations, my research was discredited by social scientists and medical professionals, suggesting that I had fallen into the "assumptive world" of my uneducated informants. Indeed, a great deal is invested in maintaining a social and clinical reality denying any factual basis for poor peoples fears of medical technologies. The transplant community's narrative concerning the absurdity of the organ stealing "rumors" offers a remarkably resilient defense against having to respond seriously to allegations of medical abuses in organ harvesting.
And so, for example, a transplantation website (TransWeb) posts the "Top Ten Myths About Donation and Transplantation" next to authoritative refutaions of each. The "myth" that "rich and famous people get moved to the top of the waiting list while regular people have to wait a long time for a transplant" is refuted with the following blanket statement: "The organ allocation system is blind to wealth or social status". But our preliminary research indicates this, like other of the transplant "myths", indeed have some basis in contemporaray transplant practices. The director of his region's Transplant Central in souhern Brazil explained exactly how wealthy clients (including foreigners) -- and those with political and social connections -- managed to bypass established waiting lists and how patients without resources were often dropped, without their knowledge, from "active status" on the wait lists for an organ.
Even the most preposterous of the organ stealing rumors -- "I heard about this guy who woke up the next morning in a bathtub full of ice. His kidneys were stolen for sale on the black market" -- which the TransWeb authors say has never been documented anywhere, finds some basis in law suits and criminal proceedings, some still unresolved or pending. In Brazil, for example, the case of the theft of the eyes of Olivio Oliveira, a 56 year old, mentally ill man living in a small town near Porto Alegre in the South of Brazil has never been solved. The story first surfaced in local newspapers in November 1995 and soon became an international cause celebre. The case was investigated by doctors, surgeons, hospital administrators, police, and journalists. While some experts claimed that the man's eyes were pecked out by "urubus" (vultures) or gnawed away by rats, others noted that Oliveira's eyes seemed to have been carefully, even surgically removed as if by a well trained medical specialist. Eventually the case was closed.
More recently, Laudiceia Cristina da Silva, a young receptionist in Sao Paulo, filed a complaint with the city government requesting a police investigation of the public hospital where in June 1997 one of her kidneys was removed without her knowledge or consent during a minor surgery to remove an ovarian cyst. The missing kidney was discovered soon after the operation by the woman's family doctor during a routine follow-up examination. When confronted with the information, the hospital surgeon explained that the missing kidney had been embedded in the large ovarian cyst , a highly improbably medical narrative. And the hospital refused to produce their medical records and the evidence -- ovary and kidney -- had been discarded. When Ferreira we called on representatives of the Sao Paulo Medical Council , which investigates allegations of malpractice, they refused to grant an interview. The director of the Medical Council said in a telephone call that there was no reason to distrust the hospital's version of the story. the Council had no intention of launching an independent investigation. But Laudiceia insists that she will pursue her case legally until the hospital is forced to account for what happened, whether it was a gross medical error or a criminal case of kidney theft.
A stone's throw from the famous Groote Schurr teaching hospital where Christian Barnard first pioneered heart transplants, residents in Black townships outside Cape Town express fearful, suspicious, and negative attitudes toward organ transplantation. Among older people and recent arrivals from the rural homelands the very idea of organ harvesting bears an uncanny resemblance to traditional witchcraft practices, especially "muti" (magical) murders in which body parts -- especially skulls, hearts, eyes, and genitals -- are removed and used or sold by deviant traditional practitioners to magically increase the wealth, influence, health or fertility of a paying client. An older Xhosa woman and recent rural migrant to the outskirts of Cape Town commented in disbelief when my assistant and I confronted her with the facts of transplant surgery: " 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".
Under apartheid and under South Africa's new, democratic, and neo-liberal context, organ transplant practices reveal the marked social and economic cleavages that separate donors and recipients into two opposed and antagonistic populations. Paradoxically, both witchcraft and witchhunting ( see Niehaus 1996; Ashforth 1996; Keller 1994) have been experiencing a renaissance in parts of South Africa following the democratic transition. These seeming "gargoyles" of the past testify, instead, to the "modernity of witchcraft" (Geschiere 1997; Ashforth 1996; Taussig 1997) and to the hyper modern longings and magical expectations of poor South Africans for improved life chances since the fall of apartheid and the election of Mandela. Long frustrated desires for land, employment, housing, and a fair share in the material wealth which have not yet materialized have fostered a resurgence of 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 smoldering in the fireplace and stored in medicine jars and boxes in the suspect's shack. On June 8, 1995, Moses Mokgethi was 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 Mokgethi claims he sold to a local township businessman for between 2,000 and 3,000 rands to strengthen his business (see Ashforth 1996:1228). Such widely publicized incidents are often followed by anxious rumors of luxury cars prowling squatter camps in search of children to steal for their heads and soft skulls or rumors of body parts stolen or purchased by "witch doctors" from corrupt doctors and police officials at public morgues for use in rituals of magical increase. These rumors are conflated with fears of autopsy and organ harvesting for transplantation.
Younger and more sophisticated township residents are critical of organ transplantation as a living 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 excess mortality caused by apartheid's policies of substandard housing, poor street lighting, bad sanitation, hazardous transportation in addition to the overt political violence of the apartheid state and the black struggle for freedom -- and transplanted to older, debilitated, affluent , white bodies. In their view, organ transplantation reproduces the notorious body of apartheid. Even in the new South Africa, transplant surgery and other high tech medical procedures are largely the prerogative of Whites.
During the apartheid years, transplant surgeons were not obligated to solicit family consent before harvesting organs ( and tissues) from cadaver donors. "Up until 1984 the conditions for transplantation were easier ", said Dr. B., a heart transplant surgeon at Groote-Schurr Hospital in Cape Town. " We didn't worry too much in those days. We just took the hearts we needed. But it was never a racial issue. Christian Barnyard 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 no hesitation in transplanting Black and Colored ( mixed race ) "donor" hearts -- taken without consent or 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 Groote 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, whether or not the patient feared he might be getting an "inferior organ". When asked why there were so few Black and mixed race heart transplant patients, Dr.B cited vague scientific findings 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 this medical myth was difficult to reconcile with the reality of the forced migrations of South African Blacks to mines and other industries in the peri-urban area, and to the history of forced removals to urban squatter camps, worker hostels, and other highly stressful urban institutions. And, by 1994, the year of the first democratic elections, for the very first time a significant percentage, 36 percent, of all heart transplants at Groote Schurr hospital were assigned to mixed race, Indian, or Black patients. With the passage of the Human Tissue Act of 1983 requiring individual or family members consent at the time of death, organ harvesting became more complicated. South African Blacks are reluctant organ, blood, and tissue donors 11 and few voluntary donations come from the large Cape Malay Moslem community due to perceived religious prohibitions. Stories of organ stealing and body tampering at the police mortuaries further intefere with voluntary organ donation in these population groups.
In 1996 and again in 1998 I began to investigate allegations of organ theft at the state-run police mortuary in Cape Town. During the anti- apartheid struggle years many physicians, district surgeons, and state pathologists working with police at the mortuaries collaborated in covering up police actions that had resulted in deaths and body mutilations of hundreds of "suspected terrorists" and political prisoners. Meanwhile, rumors of criminal body tampering were fueled by several cases that came to the attention of journalists. On July 23, 1995, the Afrikaans- language newspaper, Rapport, (23 July 1995:1) covered a story about a private detective who testified in the Johannesburg Regional Court that a policeman had shown him the mutilated body of Chris Hani in a Johannesburg mortuary the day after the black activist and political hero was murdered in 1993. A human heart alleged to be that of Hani's was sold for 2,000 Rand by a mortuary worker to disguised investigative reporters. The heart was subsequently handed over to police and Sergeant Andre Schutte was charged with defiling and corrupting the body of the slain leader. Due to stories such as these , the public morgue remains a place of horror and suspicion for township residents.
In the course of my investigations I learned that cornea, heart valves, and other human tissues were 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. Some pathologists hold that these practices are legal, if contested, but some of their colleagues consider them unethical.
A state pathologist , attached to a prestigious academic teaching hospital spoke of his uneasiness over the informal practice of "presumed consent". A loophole in the 1983 Organ and Tissue Act allows the "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". In return these organ providers gain, minimally, the gratitude, professional friendship, and the respect of the prestigious transplant teams who owe them certain professional favors in return. Since harvested cornea and heart valves are sometimes sold to other 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.
Currently, the South African Truth and Reconciliation Commission (TRC) is considering allegations of gross human rights violations at the Salt River Mortuary by the parents and survivors of 17 year old Andrew Sitshetshe of Guguletu township who failed to get a response to their complaint from the ethics committee and administrators at Groot-Schurr Hospital. The case was taken up by the TRC at its Health Sector Hearings in June 1997. ( See 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, Cape Town). In August 1992, young Andrew Sikhosonke Sitshetshe was caught in the fire of township gang warfare. Badly wounded, Andrew was taken to the Guguletu police station. where his mother, Rosemary found her son lying on the floor with a bleeding chest wound. By the time the ambulance attendants arrived, Andrew was dead and the police had Andrew taken to the Salt River Mortuary. They advised Rosemary Sitsheshe to go home until the morning when she could claim her son's body for burial. When Andrew's parents arrived at the mortuary the following morning, the officials turned them away saying that the body was not yet ready for viewing. When later in the day the family was finally allowed to view the body they were shocked at the changes.
Rosemary Sitsheshe testified to the TRC: "The blanket covering the body was full of blood and he had two deep holes on the sides of his forehead so 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."
In fact, Andrew's eyes had been removed at the morgue and when members of the Sitsheshe family returned to confront the mortuary staff they were treated abusively. A few days later, Mrs. Sitsheshe, unable to rest, went to the Eye Bank to confront the director and request what was left of her son's eyes. The director informed Mrs. Sitsheshe that her son's corneas had been "shaved" and given to two recipients, and his eyes were being kept in the refrigerator. She refused to surrender them to Andrew's mother for burial. Consequently, Andrew Sitshetshe was buried without his eyes. And, Mrs. Sitshetshe complained to the Truth and Reconciliation Commission:
" 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?....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? " Leslie London, a professor of health at the University of Cape Town testified to the TRC on behalf of the Sitsheshe: "These were not events involving a few bad apples...These abuses arose in a context in which the entire fabric of the health sector was permeated by apartheid, and in which basic human rights were profoundly disvalued."
In response to this case, the TRC raised two questions of central concern: how under the new Bill of Rights, might the new government ensure equal access to organ transplantation for all of South Africa's people in need, especially those not covered by medical aid schemes? Secondly, how might the state institute equitable harvesting and transplantation? The relevant 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" referred directly to organ harvesting practices in South Africa.
Popular sentiments against organ harvesting and transplantation practices in the African community may have contributed to Health Minister, N.C. Dlamini 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 state hospitals and the academic research centers where organ transplantation was first developed in South Africa to new, relatively autonomous, private, for profit hospitals. Soon only the wealthy and those with excellent , private medical insurance will have access to transplantation.
In November 1997, the Constitutional Court of South Africa decided against a universal right to dialysis and kidney transplant [see Soobramoney vs. Minister of Health, Kwa Zulu-Natal ], a decision that Constitutional Court Judge Albie Sachs described to me as necessary, given the country's limited economic resources, but "wrenchingly painful". The court was responding to the case of a 41 year old unemployed man from Durban ,who is a diabetic with kidney failure. The man had used up his available medical insurance and was denied dialysis at public expense at his provincial hospital, following a stroke. The high court upheld the South African Ministry of Health's policy based on the new nation's limited financial and medical resources. The main criterion for chronic dialysis is suitability for a renal transplant which requires that candidates be free of all other significant physical or mental disease, including vascular disease, chronic liver disease, or lung disease, alcoholism, malignancies, or HIV positivity. And so, Mr. Soobramoney was sent home to die.
As organ transplantation moves into the private sector, commercialism has 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 informal and subject to corruption. Although all hospitals and medical centers have ethics boards to review decisions concerning the distribution of organs for transplant, in fact, transplant teams are allowed a great deal of autonomy. Public and private hospitals hire their own transplant co-ordinators who say they are sometimes under pressure from their surgeons to dispose of usable hearts or kidneys rather than give it to a competing institution, following the rather informal rules set up between and among hospitals and transplant centers.
The temptation "to accommodate" patients who are able to pay is beginning to affect both the public and private sector hospitals. At one large public hospital's kidney transplant unit, a steady trickle of kidney patients and their live donors arrive from Mauritius and Nimibia. Although claiming to be "relatives", the nurses say that many are paid donors, and since they arrive from "across the border", the doctors tend to look the other way. While I was in Cape Town in 1998, a very ill , older business man from the Cameroon's arrived at the kidney transplant unit of a public hospital accompanied by a paid donor the man had located in Johannesburg. The donor was a young college student who agreed to part with one of his kidneys for less than $2,000. When the couple failed to cross- match in blood tests and were turned away, they returned to the hospital the next day, begging to be transplanted in any case. The patient was willing to face almost certain organ rejection. They were turned away, but would private hospitals be as conscientious in refusing such hopeless cases among those willing to pay regardless of the outcome?
Meanwhile, those acutely ill patients who live at a distance, without easy means of communication and transportation, such as in the sprawling townships of Soweto outside Johannesburg or Khayalitsha outside Cape Town have little 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 who had been on the hospital 's 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. But the week before I met with Wynand Breytanbach, ex-deputy minister of defense under President P.W. Botha who was recuperating in his splendid home outside Cape Town from the heart transplant he had received on his government pension and health plan after less than a month's wait. As Breytanbach spoke about his time served on South Africa's notorious Security Committee and justified the violence that was visited on dissidents and ANC "terrorists" I had to control my rising outrage. Meanwhile, at the venerable Groote-Schuur Hospital a virtual , if unofficial, moratorium had brought heart transplantation to a standstill in February 1998.
There are several distinct narratives concerning abusive and deviant practices of organ procurement for transplant surgery in Brazil, depending on the particular era in transplant surgery, the type of surgery, and whether living or cadaveric donors. The first narrative (discussed earlier) concerns the gross human rights violations of the bodies of poor sub-citizens, living and dead, as practiced during the later years of the Brazilian military dictatorship when, as Dr. X put it,"transplant surgeons were real pirates after bodies and body parts ". With the transition to democracy in the mid 1980s the violations committed during the military dictatorship years were replaced by softer forms of organ sales and "compensated gifting" between family members and strangers.
Democratization and valient attempts to centralize organ harvesting and distribution regionally in the cities of Rio de Janeiro, Sao Paulo, and Recife, among others, have certainly eroded but not ended the many loopholes and "jeitos" available to weathy "super-citizens " which enable them to move ahead on waiting lists and obtain organs months and years ahead of ordinary citizens who are dependent on the national health service (SUS) or on inadequate medical insurance programs. From the industrialized south to the rural interior of Northeast Brazil transplant surgeons, patients, organ recipients, and transplant activists tell stories of laws and medical-hospital regulations that are bent, "negotiated" , "facilitated" or circumvented by means of personal contacts and "jeitos", a popular expression for ways of getting through obstacles by means of wit, cunning, trickery, bribery, or influence, especially by those with material or symbolic capital.
A young informant reported to my assistant, Mariana Ferreira, in Sao Paulo in December 1997 that after being told he would need a cornea transplant, the doctor reassured him: "I can refer you to some friends of mine at X Hospital. You will still need to register with the cornea waiting list, but if you have $ 3,000 cash you can cut through the list and be placed up front."
A kidney transplant activist in Sao Paulo showed us her files on the hundreds of ordinary citizens and candidates for kidney transplant who , despite medical exams and multiple referrals, have never been called to the top of any transplant list, herself included. She was cynical about the wealthy people who arrive in Sao Paulo from elsewhere in the country and who always returned home with the organ they seek, often within weeks. "The waiting list makes donkeys out of us", she said."Sometimes I think we are just there to 'decorate' the list." Neide's criticisms were supported by transplant surgeons in public and private medical centers who complained that affluent patients were hard to come by, since most traveled to Europe or the United States to get "quality organs" at "up scale" medical centers. And, of course, they said, money "paves the way" for them, whether in Houston, New York, or Sao Paulo. Transplant surgeons at the large public hospitals in the cities of Recife, Rio de Janeiro, and Sao Paulo I visited in 1997 and 1998 seemed to be engaged in an Italian strike (a slow down) as they waited for the real scarce commodity -- paying patients -- to arrive. In the meantime, few transplants were done under the system of national health insurance.
The complicated workings of Brazil's too-tiered health care system -- a free national health care system (SUS), universally available and universally disdained and a " booming" private medical sector, available to the minority and coveted by all -- generates ideal conditions for a commerce in organs and for "bribes" and "facilitations" to speed up access to transplant procedures. In the absence of a unified organ sharing network, comparable to UNOS in the U.S. and Eurotransplant in western Europe, private transplantation clinics compete with public sector hospitals for available organs. Since financial incentives are so much greater in the private sector ( where surgeons can be paid many times the standard fee for transplant surgery allowed by SUS) private hospitals are more aggressive in locating and obtaining organs. 12 SUS pays the hospital $7,000 for a kidney transplant, of which the medical team receives $ 2,000. In a private hospital the same surgery can reap between $25,000 to $50,000. In the case of liver transplants, SUS pays the hospital $24,000 dollars, while in a private clinic this surgery ranges from $50,000 to $ 300,000, depending on the complications. The chief nurse responsible for the Transplant Unit of a private hospital in São Paulo said that the above quoted average costs per transplant surgery pertained only to the hospital expenses. "Medical honoraria", she said,
" are negotiated between the patient and the surgeons. We do not interfere in those details."
So, though the Brazilian constitution guarantees dialysis and organ transplant to Brazilian citizens who need them, waiting lists for transplant surgery, are filled with people, like Neide who have been "on hold" for decades, since the minimum fee payment schedule established by SUS hardly makes the surgery worth their while. Dr.J., a young transplant surgeon in Rio de Janeiro, took me for a tour of his empty transplant unit on the 13th floor of a huge public hospital. "It is a shame", he said. "But there is simply no motivation to operate under the state system [of payment]. Most [surgeons] just bide their time here during their weekly shifts. Their real work is with paying patients in private clinics."
But even at smaller, private hospitals, like the RP in Recife, most kidney transplant patients were local and of modest means. "Why would a wealthy person come here?", asked the irritated director of the kidney transplant unit, in answer to my questions about commercialization in his unit. Although trained abroad at the best academic hospitals, Dr.P claimed that his kidney transplant unit were slighted by the "bourgeoisie" who went south to Sao Paulo or north to the U.S. for their surgical operations. His unit survived largely through living kidney donation, mostly through kin-related donation, but also through non-related "compensated" donations (paid to the recipient) by strangers, "friends", and distant kin.
While the " global business" in organs has received extensive media attention, most organ trade is domestic, following the usual social and economic cleavages and obeying local rules of class, race, gender, and geography. According to an elderly Brazilian surgeon interviewed by my assistant in Sao Paulo in 1997 a "shadow" commerce in organs has long been a reality among and between Brazilians. " Those who suffer most" , he said, " are the usual ones, mostly poor and uneducated, who are tricked or pressured into donation through private transactions that rarely come to the attention of the doctors." During the 1970s and 1980s there was evidence of the kind of rampant commercialism found in India today. I interviewed Dr.J, a nephrologist in private practice in Rio who denounced the medical climate in his city in those days: "The [organs] traffic was practically legalized here. It was a safe thing, taking place in both large and small hospitals, with no concern over its illegality."
The commerce reached a "scary peak" , he said, in the 1980s when newspapers published an alarming number of ads of organs for sale: "There were just too many people offering to sell kidneys and cornea at competing prices, not to mention the 'bad' [i.e. HIV contaminated] blood that was also being sold to private blood banks." Beginning in the 1990s, in the improved economic climate of Brazil, such blatant ads disappeared. But according to Dr. J: "The commerce has not stopped. It is simply less visible today."
According to Dr. X. of Sao Paulo, organ "donors" still show up , unannounced, at both large and small transplant centers. The wording of the exchanges is more discreet: from "selling" and "buying" organs to "offers" of help. "The price of kidneys vary. If it is an economist in need of money, naturally the price is higher. If it is a simple person, it will be cheaper." For example, he said, from time to time a patient arrives who is all dressed in the latest fashion with expensive jewelry, and she brings with her a " donor" who is wearing rubber sandals. " She describes him as her cousin from the interior of the state. We refuse to operate, and when they insist I send them to a judge to decide and leave it to him to authorize or not the transaction."
In addition to these wholly private transactions among live donor and recipient couples which most doctors tolerate as "having nothing to do with them", there are organized crime rings that deal in human body parts from hospitals and mortuaries. Brazil's leading newspaper, the Folha de São Paulo , carried several stories in 1997 of police investigations of "body mafia," criminals with connections to hospital and emergency room staff, ambulance drivers, regular and state mortuary police, and who trade in blood, organs, and human tissues from cadavers. In one case, falsified death certificates were provided to conceal the known identities of mutilated corpses in the Medical-Legal Institute of Rio de Janeiro. Investigations resulted in criminal proceedings against the identified ring of criminal mortuary workers.
Even where there is no explicit "commerce’ in organs, the social inequity inherent in the public medical care system interferes with the harvesting of organs and produces an unjust distribution. Transplant specialists such as Dr. X from São Paulo, note a common occurrence: "Sometimes a young patient dies in the periphery and is identified as a potential donor. A mobile intensive care unit arrives and takes him to the hospital so he can be placed in better [clinical] conditions to become a donor body. The family is confused and does not understand what is going on. Before this, there was no room for him in the public hospital. Suddenly, he is put into a super modern Intensive Care Unit in a private hospital or an academic research hospital . This is why the poor so often say -- and with some reason -- that they are worth more dead than alive. "
Although the earlier law regulating living organ donors (Law No.8489 issued in 1992) required a special judicial authorization to allow a non-related living donation to proceed, loopholes were common especially in small, private hospitals where living kidneys "donors" remain the rule. In July of 1997 and in August 1998 I spent time in a private hospital in Recife where 70% of all kidney transplants rely on living donors. Hospital statistics for the past decade listed 37 "unrelated" living donors in addition to a larger number of highly suspect "cousins", "god-children", "in-laws", "nieces" and "nephews". Hospital administrators, social workers, and the psychologist were not defensive about their practice which was legal as long as a local judge was willing to sign off an exception. And, they always did. Today, under the new universal donation law, there is no written stipulation about living donation and no specific code against organ sales. It was simply left out, perhaps by oversight.
Brazil has 117 medically certified centers for kidney transplant, 22 centers for heart transplant, and 19 centers for liver transplant 13 and a large number of cornea transplant centers of which only 17 are certified. The demand to keep these clinics operating at an optimum and cost-effective level has meant greater tolerance toward various informal incentives to encourage organ donation by relatives and friends. Here the lines between "bought" and "gifted" organs are fuzzy. Rewarded gifting is accepted by some transplant surgeons as an ethically 'neutral' practice. Although most transplant surgeons avoid patients they suspect of arranging a paid donor, others turn a blind eye to such exchanges. A transplant surgeon in Rio de Janeiro said: "What people work out in private between themselves have nothing to do with me. I am a doctor, not a policeman."
The compensations offered to living donors, including a relative, vary -- from small lump sums of $1,000 to privileges over inheritance. A São Paulo surgeon explained: "Yes, of course, sometimes people get things. A brother who donates his kidney will receive a private financial bonus. Later we learn that he got a car. Or, a son who donates a kidney to the father -- a situation we don't usually encourage -- gets extra privileges within the family." A nephrologist in Rio de Janeiro told of a young woman who agreed to donate a kidney to her uncle in exchange for a house. The surgeons resisted because the patient was a poor candidate for transplant and non-compliant. But after being turned away at a large public hospital he found a private clinic that accepted him. And the outcome? "The man suffered various crises of kidney rejection, he wound up back in dialyses, and was dead within the year. And there was the daughter, minus a kidney, but enjoying her new home."
In addition to rewarded gifting within families, sometimes considerable pressure, or even threats, can be exerted especially on lower status, poor, or female relatives to volunteer as kidney donors. Dr. N., a transplant surgeon in Salvador, Bahia, interviewed in June 1998 by one of my research assistants, told of the case of a young woman who was threatened by her brother who said he would kill her, if she refused to give him a kidney. He said: "The whole issue of organ capture occurring within the family involves an intensely private dynamic that often escapes the control of the most careful medical professionals".
Overall, greater pressure is exerted on lower status, poorer, or female relatives to "volunteer" as donors, which is especially problematic since these vulnerable social groups have a much smaller chance of being organ recipients themselves.14 A transplant surgeon in São Paulo explained that " the tendency, often unconscious, is to choose the least productive member of the family as a kidney donor. One might choose, for example, the single aunt." And by and large living related kidney donors tend to be female , whether mothers, sisters, and daughters. A surgeon in Sao Paulo with a large pediatric kidney transplant practice defended his clinic statistics showing a preponderance of female living related donors. "Of course", he said , " it is only natural that the mother is the primary donor. But, I usually try to enlist the father first. I tell him that the mother has already given life to the child, and now it is his turn. But the men tend to feel that organ donation is a womanly thing to do."
Zulaide, a working class physical education teacher from a small town in Pernambuco, Brazil , was approached by her older brother to be a kidney donor in the mid 1990s. He had been in dialysis for years awaiting a cadaveric organ. Because of his distance from the medical center and the low fees covered by SUS and the national health system's refusal to pay for blood matching tests, Roberto's chances of receiving an "official" organ were slim, indeed. Along with the other 15,000 thousand Brazilians waiting for a cadaveric kidney, Roberto would have to remain wedded to an antiquated dialysis machine. Ever since the much publicized medical disaster of 1995 in which 38 dialysis patients from the interior town of Caruaru, Pernambuco died of a bacterial infection transmitted through just such poorly maintained "public" machines, kidney patients have been willing to do almost anything to avoid dialysis and obtain a transplant.
Balking at the suggestion that he find a paid donor, Roberto agreed to allow his younger sister, a healthy, young married woman with three children, help him out. Although Zulaide freely donated her kidney -- "I gave it from the heart", she said, and not for gain" -- the operation was not a success. Her kidney was rejected, and Roberto died within the year. Complications arose in her own recovery and Zulaide had to give up her physically demanding job. But when she went to the private transplant clinic in Recife looking for follow up medical attention , she was rebuffed by the doctors. She was selected as a donor , the surgeons insisted, because she was healthy. Her complaints, they said, were probably psychological, a syndrome one doctor called "donor regret", a kind of "compensatory neurosis". Zulaide scoffed at this interpretation: "I miss my brother, not my kidney", she maintains.
On the other side of town, Wellington Barbosa, an affluent pharmacist in his late 60s was told he needed a heart transplant. In contrast to the endless delay that Zulaide's brother, Roberto, faced as a SUS-dependent patient, Wellington 's private doctor was able to 'facilitate' his move to head of the waiting list for heart transplant patients at a prestigious medical center in São Paulo. Consequently, Wellington's new heart was happily beating inside his chest within a matter of weeks. Meanwhile, in the crowded hillside shantytown which practically looks down into Wellington's property lives Carminha dos Santos in a two room shack. It was her perception of injustice with respect to the unequal exchange of organs that kept Carminha in a fruitless search of transplant surgery for her only son, Tomas, who lost his sight at the age of seven following the medical maltreatment of an eye infection. Scar tissue had grown over the cornea of both eyes and Tomas, now l3, was living in a world of impenetrable darkness. Carminha was certain that her son's condition could be reversed -- even if only in one eye -- by a cornea transplant. The obstacle , as she saw it, was that the " 'eye banks', like everything else in the world, were reserved for those with money".
Carminha first took the boy to Recife, and when that failed she traveled with him by bus to Rio de Janeiro where mother and son pursued one lead after another, going from hospital to hospital and doctor to doctor. Throughout all she persisted in the belief that somewhere she would find "a sainted doctor", a doctor of conscience who would be willing to help. "Don't they give new eyes to the rich"? And, wasn't her own son "equal before the eyes of God?" she asked. But in the end Carminha returned home angry and defeated. Her only hope now is to get a trained seeing eye dog for her son through a Catholic charity. "I learned one thing", she concluded bitterly with reference to Brazil's new compulsory organ donation law, " The bodies of the poor are worth more to the state dead than alive".
According to legislators interviewed , Brazil's new law 15 of presumed consent issued on February 4, 1997 was designed to produce a surplus of organs for transplant surgery, guarantee an equilibrium between supply and demand, establish equity in the distribution of organs, and end any commerce in organs. But almost immediately, the law was contested from above and below, by surgeons and by the popular classes. Most transplant specialists attributed the real problems of organ transplantation to the lack of medical and technological infrastructure for organ capture, distribution, and transplant surgery. The head nurse of the largest private transplant center in Sao Paulo explained :"The government wanted the population to believe that the real problem was the family's refusal to donate. The truth is that the national health care system does not have the technical capacity to maintain the donor’s body. And so, we lose most donors. When we think we have found a perfect donor , a 25 year-old man who suffered a car accident, who is brain dead but otherwise perfect, it is a weekend, and there is no public [SUS] surgeon available and the perfect heart goes into the garbage."
The new organ law, similar to compulsory donation laws in Belgium and Spain, makes all Brazilian adults into universal organ donors at death unless the individual officially declares him or herself a 'non donor of organs and tissues'. When the law went into effect in January 1, 1998, the state assumed the official function of monitoring the harvesting and distribution of cadaveric organs. But still there is nothing to prevent a continuing commerce in organs because the new law eliminated a key article in the previous law which required the courts to authorize permission for any non-kin-related transplants. This opens up the possibility for a perfectly legal commerce in kidneys among living, unrelated donors. The pertinent secion of the law reads : "Any able person according to the terms of civil law can dispose of tissues, organs and body parts to be removed in life for transplant and therapeutic ends (Federal Law Number 9,434, Chapter III, Section II, Article 15). As Dr.X , a surgeon from Sao Paulo explained: "If you want to 'sell' a kidney to somebody, it is no longer my duty as a doctor to investigate. According to the new law, all responsibility resides in the state alone."
And, despite the new law, those who are better off economically will continue to refuse cadaveric organs. A strong preference for a known, living donor will keep the market for kidneys alive. According to a nephrologist in private practice in Rio de Janeiro, only poorer clients will "accept" a cadaveric kidney for transplant: "In my experience the rich always want a kidney from a living person about whom something is known." The doctor says that his private patients express as much horror at the idea of receiving a "public" organ as of "public" blood in a transfusion. "Deep down", he said, " there is a visceral disbelief in our national health system. The fear of contracting AIDS or hepatitis from a public corpses is extreme." And, in fact, he concluded, these fears are not entirely groundless.
But the director of Rio de Janeiro's notorious state mortuary welcomed the new law of presumed consent as a thoroughly modern institution which offered an opportunity to educate the "ignorant povão" (the masses) in the new democracy. But to the proverbial 'average' man and woman on the streets of São Paulo, Rio, Recife, and Salvador the new law is seen as another bureaucratic assault on their bodies. The only way to exempt oneself was for adults over the age of 18 years to request new identity cards or drivers licenses that are officially stamped with the logo: "I am not a donor of organs or tissues".
In 1997 and again in 1998 people formed long lines in civil registry offices all over the country to "opt out" of the pool of compulsory organ donors. My assistants and I visited registry offices in the cities of Rio de Janeiro, Sao Paulo, Salvador, and San Carlos. Everywhere, people expressed anger and resentment toward an imperious act of the State against "little people" like themselves. Here and there individuals expressed some support for the "good intention" of the law, but they doubted the moral and organizational capacity of the State to implement it fairly. Variants of the same story were repeated up and down the line of those waiting at the Felix Pacheco Institute in Leblon, Rio de Janeiro. Most said they did not trust the state to prevent abuses against bodies of the poor and powerless. "Doctors have never treated us with respect before this law", said Magdelena, a domestic worker, referring to the scandal of sterilizations performed on poor women without their consent."Why would they suddenly protect our rights and our bodies after this law?"
Carlos Almeida, a 52 years-old construction worker in Sao Paulo saw the law as driven by profit: "Who can guarantee that doctors will not speed up death, give a little "jeitinho" [ a little devious help] for some guy to die quicker in order to profit from it? I don’t put any faith in this business of brain death. As long as the heart is beating, there is still life for me." Almeida advised his adult sons not to become donors: "I told them that there are people around like vultures after the organs of young and healthy persons." A retired accountant , Inácio Fagundes, was amazed to learn the technicalities of the new law. Shaking his head, he asked: "Does this law mean that when I die they can take my body, cut it up, take what they wish, even if my family does not agree?" On being told that this was more or less the case, Fagundes told the civil register: "Stamp it very large on my identity card:" Fagundes will not donate anything!"
So, finally, we must ask what kind of civilization our global economy has produced? Under what social conditions can a fair, equitable, just, and ethical practice of organ harvesting and distribution for transplant surgery can exist? Organ transplantation depends on a social contract and social trust, the grounds for which must be explicit. Minimally, this requires national laws and international guidelines outlining and protecting the rights of organ donors, living and dead, as well as organ recipients. Additionally, organ transplantation requires a reasonably fair and equitable health care system.
The social ethics of transplant surgery also requires a reasonably democratic state in which basic human rights, including bodily integrity, are protected and guaranteed. Organ transplantation occurring, even in elite medical centers by the most conscientious of physicians, within the milieu of a police state or authoritarian state -- as the illustrations from China, and from pre-democratic transition in Brazil and the old, apartheid governed South Africa exemplify -- can lead to gross human rights abuses of both living and dead bodies. Similarly, where vestiges of "debt peonage" systems exist which unfairly bind workers to their bosses or money lenders, and where class, race, and caste ideologies render certain kinds of bodies -- whether women, common criminals, pauper bodies in the mortuary, or street children -- as "waste", these sentiments will corrupt medical practices concerning brain death, organ harvesting, and distribution.
Under conditions such as these the most vulnerable citizens will fight back with the only resources they have -- gossip , rumors, urban legends and resistance to "modern laws" such as Brazil's new compulsory donation law. In this way, they act and react to the "situation of emergency" that exists for them in this time of economic and democratic readjustments. These subaltern voices manifest their consciousness of social exclusions and articulate their own ethical and political categories in the face of the "consuming" demands which value their bodies most at the point they can be claimed by the State as "brain dead" and a reservoir of spare parts. While to transplant specialists an organ is just a "thing", a commodity better used than wasted, to a great many people an organ is something else ---a lively, animate, spiritualized and "charismatic" part of the self.
Acknowledgements: This article has emerged from a larger comparative and collaborative project, "Selling Life" , co- directed by Nancy Scheper-Hughes and Lawrence Cohen at the University of California, Berkeley and funded by an Individual Fellowship from the Open Society Foundation in New York City. David and Sheila Rothman are also collaborators in this larger project. A first draft was written while I was a resident scholar at the Institute on Violence, Culture and Survival at the Virginia Foundation for the Humanities, Charlottesville, Virginia. João Guilherme Biehl collaborated in the compilation of field data and in discussing many of the points in this paper. In Brazil, I was assisted by a team of local researchers: Professor Mariana K. Ferreira ( Department of Anthropology, University of Sao Paulo), Núbia Bento Rodrigues ( Community Medicine, Medical School, University of Salvador), and Misha Klein ( Anthropology, University of San Carlos). In South Africa, I was aided immeasurably by my field assistant, Anthony Monga Melwanaof the University of Cape Town and Charlotte Roman of Goodwood, Cape Town. The research assistance offered by Suzanne Calpestri, of the George and Mary Foster Anthropology Library of UC Berkeley has been inestimable. Several of my colleagues in the Department of Anthropology made substantial contributions to the revision of this paper. To all of the above I am extremely grateful.
Notes
1. This essay is offered as a "transplanted" surrogate for the Sidney Mintz lecture, "Small Wars: the Cultural Politics of Childhood" which I was honored to present at Johns Hopkins University , October 28, 1996. A revised and expanded version of that lecture was published as the introduction to Nancy Scheper-Hughes and Carolyn Sargent, eds. Small Wars: the Cultural Politics of Childhood (University of California Press, 1998). I hope that traces of Sid Mintz's historical and ethnographic sensibility can be recognized in the following analysis of the commodification of human organs, yet another variant of the global trade in bodies, desires, and needs. (see Mintz 1985).
2. Although I have been harassed in the field before with respect to other research projects, this is the first time , and in the course of investigations into the traffic ( of organs and babies) in the interior of Brazil that I was warned of being followed by the "hit man" representing a deeply implicated and corrupt Judge.
3. For example, Dr. Christian Bernard, the world's first heart transplant surgeon, is now comfortably retired and enjoying his later years in the peace and tranquillity of the beautiful rural western Cape wine lands. He spends his free time writing science fiction "thrillers" (see, for example, The Donor, 1996) with a strong autobiographical flavor, dealing with the outrageous passions and ethical quandaries surrounding the endless quest and insatiable appetite for fresh human (or human-baboon surrogate) organs for transplant. But Dr. Bernard refused to be interviewed (except briefly by phone) on the real life struggles between some of his own protoges now operating in competing public and the private sectors, each suing the other for defamation of character, concealing negative data on transplant mortalities, and destroying usable donor hearts to keep them from "the competition" (see Vosloo vs. Von Oppel, Supreme Court of Cape Town, February 1998).
4. At the prestigious Hospital das Clinicas , Mariana Ferreira and I were able to follow the relatively uncomplicated transplant surgery of Domba, a Suri Indian religious leader with end stage renal disease who had been flown by small plane to Sao Paulo from his small reserve in Amazonas. Domba was , in fact, considerbaly less anxious in facing the operation than the local business man who shared his semi-private hospital room. Domba was certain that his spirit familiars would accompany him into and through the operation.
5. I am indebted to Joao Biehl for the reference to Agamben's recent work and for pointing out his relevance to this project.
6. According to Margaret Lock (personal communication) who is currently engaged in a comparative study of brain death and transplant surgery in Japan and Canada (1996, 1997), a ring of Japanese yakuza gangsters, working on behalf of Japanese transplant candidates through connections with surgeons at a major medical center in Boston was uncovered by journalists and broken up by police there several years ago.
7. The suffering to transplant patients caused by the blend of clinical and" experimental" liver transplant procedures lead one noted bio-ethicist (M.Rorty, personal communication) to stipulate an exception in her own living will. All ‘usable’ organs -- minus her liver --are donated to medical science. She observed too much suffering in post-operative liver transplant patients to which she had no desire to contribute. Likewise, Veena Das (in press) refers to "the tension between the therapeutic and the experimental" in liver transplant surgeries performed in parts of India.
8. Brain stem death implies that there are no homeostatic functions remaining. The patient cannot breath spontaneously and support of cardiovascular function is usually necessary. However, the criteria used in defining brain death vary across states, regions, and nations. In Japan only 25% of the population accepts the idea of brain death, while in Cuba the fact of irreversible damage to the brain stem is sufficient to declare the person dead. Some doctors accept brain stem death alone, while others the upper brain., responsible for thought, memory, emotions and voluntary muscle movements, must also cease to function.
9. I recall how recently it was in rural Ireland when it was still customary to call the village priest, not 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. Dr. Healy would berate a villager for calling him away to attend to a dying person. "Call the priest", he would say. "There's nothing that I can do here." And so, the passage to death itself was mediated by spiritual, not medical, body rituals.
10. A young farmer from the Dingle Peninsula , Morisheen, shared with me 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.
11. See Robin Palmer, 1984. "Blood donation in the Border Region: Black Donors, Exdonors, and Nondonors. Institute of Social and Economic Research, Rhodes University, Gramstown; R.E. Pike, et al., 1993. "Public Attitudes to Organ Donation in South Africa". South African Medical Journal 83(February) 91-94.
12. For an overview of the workings of Brazilian public health institution regarding dialysis and transplantation see the dissertation of Vera Schattan Pereira Coelho, 1996.
13. See "Censo Nacional de Transplantes de Orgaos" (data collected from January to December 1997).
14. A survey of the distribution of renal transplants in Europe and North America
( Kjellstrand 1990 ) shows that women and non- white patients had only 2/3 the chance of men and white patients to receive a transplant. A study by the Southeastern Organ Procurement Foundation in 1978 (cited in Callender, Bey, Miles and Yeager 1995) noted a disparity in the United States between the large numbers of African American patients on dialysis and the small numbers of African American transplant patients. The preliminary research of Sheila Rothman (1998) reveals a pattern of unintended discrimination in screening of African-American and Latino transplant candidates in New York City.
15. The problem of presumed consent for organ retrieval from cadavers is not limited to countries in the South where vast segments of the population are illiterate or semi literate. In the U.S.today there is considerable resistance to cadaveric organ donatation ( Kolata 1995). And James Childress (1996:11) notes that the the laws regarding organ harvesting from cadavers in the United States are "marked by inconsistencies regarding rights holders, whether these are the individual while alive or the family after the individual’s death". In practice, the state assumes the rights over any cadavers presumed to be ‘abandoned’by kin. In addition, in many states there is " presumed consent" for the removal of cornea, skin, pituitary gland and other tissues and parts , even under ordinary circumstances and without informing the next of kin. But this presumption of consent is not supported in the U.S. whenever people become aware of routine organ and issue harvesting practices.
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Inspired by Sweetness and Power, in which Sidney Mintz traces the colonial and mercantilist routes of enslaving tastes and artificial needs, this paper maps a late 20th century global trade in bodies, body parts, desires, and invented scarcities. Organ transplant takes place today in a transnational space with surgeons, patients, organ donors, recipients, brokers and intermediaries -- some with criminal connections -- following new paths of capital and technology in the global economy. The stakes are high, for the technologies and practices of transplant surgery have demonstrated their power to re- conceptualize the human body and the relations of body parts to the whole and to the person, and of people and bodies to each other. The phenomenal spread of these technologies and the artificial needs , scarcities, and new commodities (i.e. fresh organs) that they inspire -- especially within the context of a triumphant neoliberalism -- raises many issues central to anthropology's concern with global dominations and local resistances including the re-ordering of relations between individual bodies and the state, between gifts and commodities, between fact and rumor, and between medicine and magic in post-modernity.
Nancy Scheper-Hughes is Professor of Anthropology at the University of California, Berkeley where she directs the doctoral program in medical anthropology, "Critical Studies in Medicine, Science and the Body". She is the author of Saints, Scholars and Schizophrenics: Mental Illness in Rural Ireland (University of California Press, 1979, revised edition, 2,000) and Death without Weeping: the Violence of Everyday Life in Brazil (University of California Press, 1992) and the editor of Child Survival (D.Reidel, 1987), Psychiatry Inside Out: Selected Writings of Franco Basaglia ( Columbia University Press, 1987) and ( with Caroline Sargent) Small Wars: The Cultural Politics of Childhood ( University of California Press, 1998). She is a member of the international Bellagio Task Force on Transplantation, Bodily Integrity, and the International Traffic in Organs and a co-author of the first Task Force Report (1997, Transplant Proceedings, 29, 2739-2745). The field research in Brazil and South Africa on which this article is based was supported by an Open Society Institute Individual Fellowship (1997-1998).