The organ of last resort Nancy Scheper-Hughes, medical anth

[joeblow]

The organ of  last resort
Nancy Scheper-Hughes, medical anthropologist at the University of California, Berkeley

http://www.unesco.org/courier/2001_07/uk/doss34.htm

Modern medicine has given rise to a booming trade between poor and rich countries—the trade in human organs. But what of the bodies that are being plundered?

During the summer of 1998, I was sitting at a sidewalk cafe in downtown Sao Paulo with Laudiceia da Silva, who had just requested a legal investigation into the large public hospital where she had "lost" a kidney during an operation to remove an ovarian cyst.
The young woman's family doctor had discovered the kidney was missing during an examination soon after surgery. When confronted with the information, the hospital representative told a highly improbable story: that Laudiceia's missing kidney had been embedded in the large "mass" around her cyst. The hospital, however, refused to produce either their medical records or the evidence—the diseased ovary and the kidney had been "discarded," she was told. To make matters worse, Laudiceia's brother had been killed in a random act of urban violence several weeks earlier, and the family had arrived at the hospital too late to stop his organs being removed on the basis of Brazil's new "presumed consent" law.
"Poor people like ourselves are losing our organs to the state, one by one," Laudiceia said angrily.

"Follow the bodies"
Hers is but one of several credible stories of "kidney theft" that anthropologist Lawrence Cohen and I have encountered in South America, India and Bangladesh as part of our work for the Berkeley Organs Watch, an independent human rights organization seeking to investigate allegations of medical abuse in the harvesting, distribution and transplantation of organs.
The project stems from experience on a prestigious international taskforce set up to investigate the organ trade and develop ethical guidelines to prevent abuses. Soon after reaching the conclusion that the trade was far more extensive than previously thought, the Bellagio taskforce was disbanded. In the absence of any other institution of its kind, Organs Watch was conceived as a stop-gap measure, offering a frontline response to reports of illegal organ and tissue sales or theft anywhere in the world.
Our simple mandate is to "follow the bodies." We follow transplant patients from dialysis clinics to surgery, and donor bodies from township shabeens [bars] to police stations and public mortuaries and from there to the various eye banks, medical clinics and research laboratories where their parts are harvested and redistributed. At times, the surgery theatres feel more like theatres of the absurd, as a few scenes plucked from our fieldwork will show.
In a Chennai (Madras) slum in South India, my colleague Lawrence Cohen met five local women, each of whom had sold a kidney for 32,500 rupees (about $1,200 in 1999). Each had undergone their operation at the clinic of Dr. K.C. Reddy, India's most outspoken advocate of the individual right to sell a kidney. Unlike the more seedy "organs bazaars" of Bombay, Dr. Reddy prides himself on running an exemplary clinic: his kidney sellers are carefully screened, fully informed about the medical risks and provided with free health care at his clinic for two years after kidney removal. The women Cohen interviewed were mostly low-paid domestic workers with husbands in trouble or in debt. The kidney sale was usually preceded by a financial crisis. Did the sale make a difference to their lives, Cohen asked. Yes, for a time, but the money was soon swallowed by the usurious interest charged by the local money lenders. Would they do it again if they could? Yes, the women answered.
Several months later, I sat next to Rosemary Sitsheshe at her home in Guguletu township outside Cape Town, South Africa. Her only son, 17-year-old Andrew, had been caught in the crossfire of township gang warfare just before the end of apartheid. He died of a chest wound under police surveillance. The next day Rosemary went to the local police mortuary to claim his body, but officials turned her away. Two days later, when the family was finally allowed to view Andrew's body, they were shocked: the blanket over it was covered with blood and there were two deep holes on either side of his forehead. Rosemary protested, saying he had been killed by a single, clean bullet to his chest. The state pathologist treated her and her husband abusively.
Later, accompanied by her own private pathologist paid for by the African National Congress, Rosemary learned at the morgue that her son's eyes had been removed and that inside his abdominal cavity the organs had all been severed and carefully replaced. "But were those my son's organs?" she asked. "I know my son's eyes but not the colour or shape of his heart or kidneys." At the local eye bank, Rosemary was told that her son's corneas had been "shaved" and given to two "lucky patients." The remains of Andrew's eyes were being kept in the refrigerator and the director refused to return them to Rosemary for burial.
"Although my son is dead and buried," she said, "is it good that his flesh is here, there, and everywhere, and that parts of his body are still floating around? Must we Africans be stripped of every comfort?" Rosemary Sitsheshe has since taken her complaint against the police mortuary and eye bank to South Africa's Truth and Reconciliation Commission. She asked that her case be treated as one example of a practice that was widespread in police mortuaries under apartheid and which continues in some instances.

Transplant tourism
In the most bizarre fieldwork expedition of my career, I went under cover to the grounds of Montes de Oca state mental asylum in the province of Buenos Aires in January 2000, accompanied by a private detective. We went there to see what, if anything, we could discover about persistent reports of blood, tissue, and organ stealing from the bodies of profoundly mentally retarded, but otherwise physically healthy, inmates. The reports first surfaced in the early 1990s following the "disappearance" of a young psychiatrist, Dr. Gubileo, who had lived on the grounds of the institution. She was apparently on the verge of revealing the illicit practices by the director of the asylum. A court-ordered search of the grounds of Montes de Oca did not recover the remains of Dr. Gubileo, but did recover a few bodies of unidentified missing patients.
The only witnesses to the doctor's kidnapping were two asylum patients, who said they saw her being pushed into the back of a van belonging to the asylum. But declared mentally incompetent, the witnesses could not give testimony in court. The allegations of other nefarious goings-on at Montes de Oca led, ultimately, to the arrest of the medical director, followed by his unexplained death in a prison cell the day before he was to give testimony in court. The case was then closed.
Human strip mining of the dead for usable parts is not limited to former police states in South Africa, Brazil, and Argentina. Similar practices can be found in one of the wealthiest communities of the United States. In the fall of 1999, I sat in a diner in Hollywood with Jim C., notorious "organs broker" who solicited international buyers and sellers from his home. "There's no reason for anyone to die in this country while waiting for a heart or a kidney to materialize. There are plenty of spare organs to be had in other parts of the world." Though Jim is operating in a grey netherworld, he insists that what he does is not illegal. "Don't think of me as an outlaw," he said. "Think of me as a new version of the old-fashioned marriage broker. I locate and match up people in need."
Organ transactions today are a blend of altruism and commerce; of science, magic, and sorcery; of voluntarism and coercion; of gift, barter, and theft. In general, the organs flow from South to North, from poor to rich, from black and brown to white, and from female to male bodies. Today, affluent transplant tourists can travel to select medical sites in Turkey, Eastern Europe, Cuba, Germany and the United States in search of transplants that they cannot arrange quickly or safely enough at home. These special clinics can resemble four-star hotels or even as in Cuba, health spas for the rich and famous.
Israel has recently become something of a pariah in the transplant world. Without a strong culture of organ donation and under the pressure of angry transplant candidates, the Ministry of Health has refused to crack down on the country's multi-million dollar business in transplant tourism that arranges junkets from dialysis clinics in Jerusalem and Tel Aviv to medical centres in Europe and the United States.
"Why should we Israelis be made to travel to third world clinics to get the kidneys we need to survive from the bodies of peasants, soldiers, or guest workers who may be in worse physical shape than ourselves?" a 71-year-old "kidney buyer" from Tel Aviv asked me rhetorically. "Organs should be seen as a human, not as a national resource." It was good to see "Avirham," an elderly gentleman, alive and happy with his revitalizing 22-year-old "peasant" kidney. And his living donor? "A peasant, without anything!" he replied. "Do you have any idea what $1,000, let alone $5,000 means in the life of a peasant?"
For most bio-ethicists, the "slippery slope" in transplant medicine begins with the emergence of a black market in organs and tissue sales. For the anthropologist, it emerges much earlier: the first time a frail and ailing human looks at another living person and realizes that inside that other body is something that can prolong his or her life. The desire is articulated: "I want that; I need that even more than you." In terms of transplants, the kidney has emerged as the ultimate fetish, promising to satisfy the most basic of human desires—that for life, vitality and élan.
The sale of human organs and tissues requires that certain disadvantaged individuals and populations have been reduced to the role of "suppliers." It is a scenario in which bodies are dismembered, transported, processed and sold in the interests of a more socially advantaged population of organ and tissue receivers. I use the word "fetish" advisedly to conjure up the displaced magical energy that is invested in the strangely animate kidney. Avirham, who flew from Jerusalem to Georgia for his kidney, explained why he would never tolerate a donation from a corpse: "That kidney is practically dead. It was probably pinned down under the wheels of a car for several hours. . . I was able to see my donor. He was young, healthy, strong. Just what I was hoping for."
In Brazil, the refusal of a corpse's kidney was just as virulent. A surgeon in the area of Copacabana Beach said that most of his patients refuse to consider an organ from an "anonymous" dead person. "My patients do not trust the public health system. They fear that the organ will come to them full of pollutants." The ultimate fetish is the idea of "life" itself as an object of manipulation. This fetishization of life—to be preserved, prolonged and enhanced at almost any cost—erases any possibility of a social ethic. Often when I speak of troubling issues in organs procurement, I am accused of "taking a chance for life" away from someone. But I am trying to underscore that there is another "body" of patients whose needs are being ignored or violated.
Notions of bodily autonomy and integrity are almost universally shared today. They lie behind patients' rights movements, the demands of the wretchedly poor for dignified burial and popular resistance to "presumed consent" laws. But for some of those living on the margins of the global economy, the possibility of selling an organ seems like an act of empowerment. "I prefer to sell it [my body] myself rather than to let the state get it," was a sentiment frequently expressed by shantytown residents in urban Brazil.
In fact, it is in the West where the values of bodily autonomy and integrity are most under assault. As commercialization has entered almost every sphere of life—from markets in "beauty queen" ova and "genius sperm"—those in the North cannot claim any moral high ground. Meanwhile, the new constitutions and bills of rights adopted by democratic Brazil and post-apartheid South Africa are far more developed than "ours" in recognizing human rights to bodily autonomy and integrity.
Organs Watch is seeking assurances that transplant practices include attention to the needs and wishes of donors, both living and dead. We ask that surgeons pay close attention to where organs have come from and the manner in which they were procured. We want the "risks" and "benefits" of organ transplant surgery to be more equally distributed among and within nations, and among ethnic groups, genders and social classes. Finally, we want assurances that the so called "gift of life" never deteriorates into a "theft of life."