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Ethical Considerations Follow-Up Informed Consent Living Donor Research Living Kidney Donor Organ Markets

More Bad News For Iranian Kidney Donors – er – Sellers

From Transplant Proceedings:

 

With assistance of the Iranian Kidney Foundation, we accessed the contact information of living donors through the years 2001–2012. We tried to contact donors who have donated at least 2 years before the survey. We interviewed these donors according to a questionnaire that was approved by the ethics committee of the research deputy of Tehran University of Medical Sciences. The collected data were analyzed using the SPSS software version 20.

Results

The contact data of 388 donors were available but we were able to contact only 60 donors. We found that 40% of donors had been informed about the risks and benefits of donation. Also, 11% of donors had not had a full physical examination and in 5% even blood pressure was not measured before donation by the transplantation team. The donors reported that 34% of them had not been educated on how they should follow up their health status and 50% of the donors did not have any follow-up after donation.

 

The most understated conclusion in the history of conclusions:

 

In the Iranian model of transplantation the donors are the neglected victims of renal transplantation and this model should be revised immediately, concerning both the medical and ethical issues.

 

Khatami, M., Nikravan, N., & Alimohammadi, F. (2015). Quality and Quantity of Health Evaluation and the Follow-up of Iranian Living Donors Transplantation Proceedings, 47 (4), 1092-1095 DOI: 10.1016/j.transproceed.2014.11.059

Categories
Ethical Considerations Living Donor Research Organ Markets

How Victims of Organ Trafficking in Bangladesh Fare

My prior post addressed how the attitudes underlying kidney markets has infiltrated our own. Today, I want to discuss how the kidney sellers fared after relinquishing their kidney: (any bolding is mine)

 

After the surgery, the first thing the sellers notice is the rough cut about 20 inches long on their bodies. The sellers are unaware that if the buyers had paid only $200 more, the surgeons could have used laparoscopic surgery, which requires an incision as small as four inches. To minimize the cost, the sellers are also released from the hospital within five days after having this highly sophisticated operation. Sellers return to the broker’s unhygienic apartment with a permanent scar of this bioviolence.

 

Staying in India, especially after the operation, is so inconvenient that almost every seller travels back to Bangladesh within a few days, despite the doctor’s recommendation to stay a few weeks longer. While travelling by train in such early stages of recovery, some sellers experience bleeding from their wound. Malek, a 28-year-old seller, visited doctors in Calcutta for the bleeding but could not afford to stay for his treatment. When the sellers cross the border into Bangladesh, they reenter their old life with a new, damaged body, the end product of the bioviolence.

 

After returning home, sellers are under constant psychological pressure to explain their absence and to hide their scars.. If the scars are revealed, the sellers make up a story of an unfortunate accident that happened during their job in a distant city. However, some sellers are unable to hide their actions; they are stigmatized and are called “the kidney man.” A few sellers also decide not to get married, ever.

Above all, the sellers’ health profoundly deteriorate in the postvending phase. They experience numerous physical problems and went through severe psychological suffering. The sellers refer to themselves as “handicapped.” Yet, none of the sellers could afford the biannual postoperative health checkup, which costs only 1,500 Taka ($22).

 

Most sellers (27 out of 33 sellers) do not receive the full amount of money they had been promised…

Only two sellers, Abul (32) and Rahmat (28), benefited economically, opening a livestock farm and buying land with the payment. The others have not escaped poverty and are actually living in worse conditions than they were before their operations…

Of Bangladeshi sellers, 78 percent reported that their economic condition deteriorated in most cases after the surgery; many sellers lost their jobs and were still unemployed, while others were able to work fewer hours because they had only one kidney.

 

Every year, most sellers vividly remember their operation day—“the death day,” as one of them called it. Every day, all sellers live with the fear of dying sooner because they have only one kidney

 

Some sellers therefore felt strange when their recipient died. Those sellers could not comprehend how one of their body parts could have died when they themselves were still alive.

 

The sellers I interviewed tended to withdraw from their family, friends, and society. They suffered from grave sadness, distress, hopelessness, and crying spells. In their frustration, some sellers therefore became
addicted to drugs.

 

Thirty-three Bangladeshi sellers typically experience pain, weakness, weight loss, and frequent illness after selling their kidneys

 

A quick review of studies from other countries with legal, quasi-legal or illegal kidney markets will tell the same tale. Commodifying kidneys benefits recipients, and physicians but is highly detrimental to the person relinquishing the organ.

 

Moniruzzaman M (2012). “Living cadavers” in Bangladesh: bioviolence in the human organ bazaar. Medical anthropology quarterly, 26 (1), 69-91 PMID: 22574392

Categories
Ethical Considerations Living Donor Research Organ Markets

Biolviolence and Organ Donation

I’d never heard the term “bioviolence” until today, when I began reading an article by Monir Moniruzzaman entitled “Living Cadavers in Bangladesh”. While the article is an examination of organ trafficking in Bangladesh, its themes extend into issues regarding all forms of human organ and tissue use – and commercialization.

This paragraph in particular:

 

In essence, bioviolence is an act of inflicting harm and intentional manipulation to exploit certain bodies as a means to an end. This term not only refers to the act itself (i.e., extracting organs from the physical body) but also to the processes involved (i.e., deception and manipulation for organ procurement) in the exploitation of bodies, mostly of impoverished populations

 

In addition to organ donation, the author cites assisted reproductive technology (surrogacy), Henrietta Lacks’ HeLa cells, and clinical drug trials as other forms of bioviolence – the people used or taken from are usually impoverished or otherwise disadvantaged while whose those who benefit from the results are affluent and/or privileged.

But back to organ donation:

 

Margaret Lock (2000) addresses the symbolic violence, particularly in cadaveric organ procurement, elaborating how the transplant industry creates an insatiable demand for organs, which will, as she argues, always remain greater than the supply because the medical eligibility to receive an organ grows even more acute (see also Illich 1976; Koch 2002; Scheper-Hughes 2003a; Sharp 2006). At the same time, the industry studiously ignores the source of harvested organs almost all the time. Lock therefore underscores that this artificially created organ scarcity and the procuring of organs from every source generate unavoidable violence, which flourishes in every aspect of the transplant enterprise, but has been largely masked by powerful rhetoric associated with “the gift of life.” According to Lock, this constitutes symbolic violence, as it folds seamlessly into the institutional setting, appears as a natural phenomenon for daily life, and becomes normalized through the rhetoric of scientific progress (Lock 2000:291).

 

I admit, a lot of this is discomforting. No one wants to believe that people are being harmed for their organs (deceased or living) or that transplant professionals are motivated by anything other than concern for their sick patients (the would-be recipients). But the horror stories of “dead” people regaining consciousness are more than urban legends, and the discourse regarding “cardiac” death and “brain” death are real. As science progresses, so do the ethical lines thin and stretch. And break.

I read articles about organ trafficking (and discuss them) not because I need confirmation that organ trafficking is abhorrent, but because of how the themes mirror themselves in our Western systems of donation.

 

The interviewed sellers have very limited knowledge about organs in the human body.

 

How much information are potential (western) living kidney donors given about the functions and role of their kidneys? At least in the U.S. no education is required prior to donation. Nothing about how the kidneys help regulate water, potassium, sodium etc in the body, or produce vitamin D, which assists in bone growth and health. Without providing information, or giving a potential living kidney donor a quiz, how can a transplant center be sure someone is making an educated decision to donate?

 

Most sellers also revealed that brokers encourage them to participate in the trade by repeatedly telling a story about the sleeping kidney. The story goes like this: A person has two kidneys: one works and the other one sleeps. If one kidney is infected, the other kidney automatically starts working. But if one kidney is damaged, the other one will be damaged, too, because of the polluted blood. Therefore, everyone can be healthy with only one kidney. During the operation, the doctor first starts a donor’s sleeping kidney with medicine. The “newly awakened” kidney stays in the donor’s body and the “old” kidney is removed and given to the transplant recipient. In this manner, selling a kidney is presented as a win–win situation.

 

While we don’t have this level of fabrication happening in the US, how many times have you the word “spare” used in connection with living donation?

“Donate your spare!”

“I donated my spare!”

“Got a spare?”

“Save a life with your spare!”

 

After further negotiations, the buyers finally agree to pay 100,000 Taka ($1,400)

Many sellers are not pleased; the buyers promise to offer them a job, arrange a visa and citizenship they will need for going abroad, or allocate land. All sellers are fearful; the buyers guarantee that the operation is 100 percent safe, saying that the sellers will be in the hands of world-renowned specialists.

 

Compared to:

“…The complication rates are low”

“Living donors go through the donation experience without experiencing any decrease in lifespan and they do not have a higher rate of kidney failure.”

“Kidney donor surgery is a very safe operation”

“Years of research and follow up studies with live kidney donors confirm that donating a kidney does not have an adverse effect on future health in any way”

 

The kidney sellers reported:

…the recipients attempt to convince them by portraying “kidney donation” as a “noble act” that saves lives…

 

In the U.S. and West:

Heroes.

Gift of Life.

 

I shouldn’t have to say the following, but years of dealing of with internet commentors has proven that it’s better to soothe the rabble before it gets riled up:

I am not saying the Western models of living kidney donation (aka altruistic) are, in any way, as indefensible as what’s occurring in Pakistan, India, Bangladesh and other countries. However, in order for our claims as beacons of ethical pureness to be taken seriously, we have to examine how the attitudes that permit the atrocities occurring in those countries are at work in ours. Historically, we have not cared for our living donors in any meaningful way, and we continue to hedge our responsibilities to do so. Just because the kidney sellers in Bangladesh (or otherwise) are harmed more than those in the U.S. does not mean our obligation to our living donors is, in any way, moot. It simply means we’re not as enlightened as we’d like to believe.

 

 
Moniruzzaman M (2012). “Living cadavers” in Bangladesh: bioviolence in the human organ bazaar. Medical anthropology quarterly, 26 (1), 69-91 PMID: 22574392

Categories
Advocacy Ethical Considerations Living Donor Research Living Kidney Donor Organ Markets

Transplant Industry’s Role in Illegal Organ Trade

I’ve written about Dr. Nancy Scheper-Hughes before. The writer of this article asks the right question: why is no one listening to her?

 

Regarding her time at a 1995 conference in Bellagio, Italy (emphasis mine):

One [transplant] surgeon told her that he knew of patients who had traveled to India to purchase kidneys. She remembers an Israeli surgeon telling her that Palestinian laborers were “very generous” with their kidneys, and often donated to strangers in exchange for “a small honorarium.” A heart surgeon from Eastern Europe admitted his concern that medical tourism would encourage doctors from his country to harvest organs from brain-dead donors who were “not quite as dead as we might like them to be.” In these new practices, Scheper-Hughes began to understand, human organs and tissue generally moved from south to north, from the poor to the rich, and from brown-skinned to lighter-skinned people.

 

Results of her late 1990’s research (emphasis mine):

In the Philippines, kidney sellers she interviewed often pulled up their shirts, displaying their nephrectomy scars with evident pride. They spoke of the surgery as a sacrifice made for their families, and members of their community sometimes compared their abdominal incisions to the lance wounds Christ received on the cross. 

In Moldova, as she reported in a 2003 paper published in the Journal of Human Rights, people who had sold their kidneys were considered so morally and physically compromised that they were treated as social pariahs. “That son of a bitch left me an invalid,” one Moldovan paid donor said of his surgeon. 

Young Brazilian men who had been flown to South Africa to sell their kidneys described to Scheper-Hughes how the experience had gained them a pass into the world of tourism and medical marvels. One told her that his main regret was not having spent more time in the hospital. “There were clean sheets, hot showers, lots of food,” he recalled. As he recovered, he went down to the hospital courtyard and bought himself his first cappuccino. “It was like ambrosia,” he said. “I really felt like a big tourist.” In the end, some attested that they would make the deal again, and some regretted the decision. “They treated me OK until they got what they wanted,” another seller told her. “Then I was thrown away like garbage.”

 

Regarding the “transplant establishment”:

“Transplant surgeons vie only with the Vatican and its cardinals with respect to their assumption of privilege, irrefutability and of a kind of ‘divine election’ that seems to place them above (or outside) the mundane laws that govern ordinary mortals,” she wrote in one article. “Like child-molesting priests among Catholic clergy, these outlaw surgeons are protected by the corporate transplant professionals hierarchy.”

 

By far, the most illuminating portion of the article is an interview Scheper-Hughes secured with a retired US transplant surgeon (at a “major east coast hospital”) in January 2012 (emphasis mine):

The surgeon volunteered that he had conducted transplants later revealed to have been set up by Rosenbaum, but said that he had no direct knowledge that the donors had been paid. “In the back of my mind there is always the possibility that there is some incentive, but you can’t control it. Personally, I don’t see anything wrong with it.” Then he added: “I know it is illegal. We have a protocol.”

 

 He went on to suggest that it was likely that everyone involved at the hospital had good reason to be suspicious. “There is no question that everyone in the program felt that it would be very possible that there was some kind of incentive there. I didn’t feel that I had to be the police. As long as I don’t know and as long as I don’t have any evidence, I’m not going to deny the transplant just because I have the suspicion,” he said.

 

When the surgeon suggested that all of his patients did well, her tone turned stern. “I want to tell you something,” she said. “Your patients didn’t all do so well—the donors didn’t all do well,” she said, adding, “There is no dependable aftercare. They go thousands of miles away and you don’t know what happened to them. So you don’t know who dies.” The doctor seemed momentarily chastened, but he maintained that he had improved the health of patients who needed transplants and that he had done nothing wrong.

 

That, my friends, is everything you need to know about the US transplant industry. They know, but don’t care, that international laws are being broken. They know, but don’t care, that disadvantaged people are being used as medical supply. And they know, but don’t care, that those same people are suffering because of it. Their one and only concern is for the recipients.

 

 

Categories
Organ Markets

Take 10 Minutes to Listen To This

Art Caplan and Nancy Schepler-Hughes talk about organ trafficking.

http://www.armoudian.com/log/scholars-circle/the-scholars-circle-radio-march-23rd-2014/

 
 

Also – read how Nancy tried to tell every law enforcement and public policy agency about Rosenbaum’s kidney trafficking ring, and no one would listen here.