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U.S. law is clear, but ethical issues abound in organ transplantation centers
Medical tourism, illegal donors pose dilemmas
While it is illegal for an individual to sell his or her organs to transplant recipients in the United States and in most other countries, experts indicate the selling of organs is widespread in certain developing countries.
Some of those organs make their way to the Unites States, those involved in research and transplantation medical care say.
The practice of medical tourism — or patients on the transplant waiting list in the U.S. going abroad to essentially purchase organs, often from financially desperate donors — has become more common as the supply of available organs for transplant outstrips the supply.
Alternatively, donors who are willing to sell organs sometimes come to the United States for transplant in this country.
"I would say it is clearly not legal to do so in the United States — that's clear," says Ann Mongoven, PhD, MPH, of the Center for Ethics and the Humanities in Life Sciences at Michigan State University in East Lansing, MI. "The question about whether it happens in the Unites States, I think, is a more open question. We certainly know of cases where it did. And the question, then is: How widespread is that? It's very hard to know, because it's illegal. So, it's hard to track.
"I think in many of the cases we're aware of, someone was brought in from overseas, and in order to provide an organ, they were posed as a relation or friend of the recipient but actually were there on a paid basis."
The organization she credits with having done the greatest amount of tracking of illegal practices in organ donation is Organ Watch, headed by medical anthropologist Nancy Scheper Hughes, a professor at the University of California, Berkeley. But proof is hard to come by.
Some who spoke to MEA told of transplant centers being "hoodwinked" by individuals who came to this country specifically to sell an organ. Mongoven says one such donor from Israel even made a documentary of his experience titled "Kidney Beans."
"Because they are posing themselves as a personal supporter or friend of the recipient . . . this is why, in some instances, it can, in fact, be difficult for a transplant center to know, because the would-be donor is saying all the right things," Mongoven says.
View from the inside
New York City transplant surgeon Thomas Diflo, MD, FACS, who published an article in 2001 in the Village Voice on the practice in China of executing prisoners — some of them political prisoners — to obtain their organs illegally, tells MEA that certain illegal practices related to organ donation have been "going on probably as long as we've been doing transplants."
"Certainly, it's been going on for at least the last 20 years," he notes. That's about the time anti-rejection drugs for organ transplant recipients became available, making it easier and more successful from a medical perspective for transplant hopefuls to receive donations from individuals other than close family members.
Diflo, associate professor of surgery and director of the Surgical Skills Lab, at New York University School of Medicine, agrees that "it's hard to tell," despite extensive screening processes in place at most transplant centers, whether or not these practices are increasing.
According to Michael E. Shapiro, MD, FACS, chief, organ transplantation, at Hackensack University Medical Center, and professor of surgery, Touro University College of Medicine, there was tremendous attention on a case from the summer when a Brooklyn rabbi was alleged to have been trafficking in organs with Israeli donors.
"Obviously, there was a lot of press…which is, as near as I can tell, the first arrest in the United States for someone trafficking in organs," says Shapiro, who is also chair of the ethics committee for the United Network for Organ Sharing (UNOS), and he spoke to MEA in that capacity.
"That's something that many of us have been concerned about happening for some time now, but this is the first time that they've ever caught somebody," Shapiro tells MEA.
And while he says that some in the transplant community may have suspected this was taking place, "none of us, I think, had the kind of evidence that you [would] want to call the FBI about."
"But many of us have seen people over the years where you just had a very uncomfortable feeling that you weren't getting the straight scoop from a donor and a recipient," he says. "And some of us, on occasion, have turned folks away [because] we felt so uncomfortable . . . "
Physicians and surgeons are within their rights to turn patients away in such instances.
"Like any other physician, you can choose who you wish to treat or not treat, unless you're in an emergency situation," Shapiro says.
But again, actual numbers are difficult to obtain, experts say.
"People aren't terribly up-front about it," Diflo says. "It's not something that they really like to talk about — with rare exceptions. So, it's hard to get a handle on the numbers."
Instances like the rabbi allegedly trafficking organs and the documentary "Kidney Beans," may not be anomalies.
"Again, these are the sort of famous cases that come to public attention, and the question is, how many of these cases are coming to public attention?" says Mongoven. "I think the answer is we don't really know. We have every reason to believe there are patterns there, but we don't know how big they are."
UNOS policy/public comment period
In 1984, the National Organ Transplantation Act was passed, which made it illegal to traffic in organs. Shapiro notes that the legislation itself uses the term "valuable consideration," which is interpreted as meaning a financial payment for an organ.
"So, many of us have always told patients that the gift from a living donor, in fact, has to be a gift . . .," Shapiro says.
But a cash payment isn't the sole possibility to fall under the legal term "valuable consideration," he notes.
"One might be concerned about an employee donating an organ to a member of his employer's family . . . from the point of view of coercion that we would want that donor making that donation voluntarily and not feeling pressure. It's hard in that sort of power relationship," Shapiro says. "One would also be concerned that there had been some sort of offer made. You know, give my daughter a kidney, and in six months, we'll promote you kind of thing — which would also [be considered] valuable consideration."
Currently, UNOS is accepting public comment on a proposed policy to require transplant centers to obtain a signed document from donors indicating that they are aware and understand that selling organs in a federal crime in the United States.
Due to recent media attention regarding trafficking practices globally and in the U.S., Shapiro says that the UNOS living donor committee "felt that it would be important for transplant programs to inform donors and recipients that it's illegal to do this. Almost all of us already do that. And to document . . . the donor and recipient understand. "…You can document that they say they understand, but unless you give them an exam, I'm not sure you can document their understanding."
In terms of what would be accomplished by having both the donor and organ recipient document this, Shapiro explains, "That's a good question, and I'm not sure I know the answer to that."
"You could say that you're doing that because it's important to inform donors, because they might not know," he continues. "I have to tell you that I would be terribly surprised [if] there has ever been these Perry Mason moments. I can't believe you would say to a donor, 'You know, it's illegal for you to get paid for an organ, and the donor would jump up and say, 'Oh, my gosh, I never knew that. You know, they were offering me money; I guess I have to leave.' I'm not that naïve."
Shapiro says that the FBI transcripts from the Brooklyn case show that the alleged organ trafficker "went on at some depth about how they prepare these donors for their donor interviews, and they coach them, and obviously they have to lie.
"So, I am sure that in the setting of a poor Brazilian, Pakistani, [or] Filipino selling his organ that they may or may not know that it's illegal. I don't believe that Israelis coming to the United States and selling their organs don't know that what they're doing is illegal and haven't been told that they need to lie when they're asked," Shapiro says.
Diflo agrees that "these people know what they're doing is illegal — it's not a big surprise to them. Having them sign a UNOS-required form that says it's against the law is not going to make any difference."
Requiring documentation, he suggests, is "not going to change anything."
Is treating illegal recipients also complicity?
Another ethical issue arises when transplant recipients in the United States engage in medical tourism by going to a foreign country to seek an organ and undergo the transplantation procedure abroad, as well.
A dilemma is created for many transplant surgeons when that patient returns to the United States seeking the necessary continuing care for transplant recipients from their U.S. physician. What's a physician in these circumstances to do?
"That's a very difficult dilemma for the physician, because they certainly want their patients to get good follow-up care and don't want to abandon a long-standing patient, but at the same time, they may not wish to participate in the international organ trade," Mongoven tells MEA. "So, the question becomes: If I provide follow-up care, am I not actually becoming complicit in this whole trade?"
In previous years, Diflo said he had such patients who had gone abroad for organs return to the U.S. and seek out his care.
"This is where we're obligated to take care of the people who seek us out, but I was kind of in a moral quandary about these patients . . .," Diflo tells MEA. "My eventual conclusion was that I was just going to continue taking care of them, as I had before, but I decided to be more proactive about it, and anybody who expressed interest in going abroad and obtaining an organ, I told them beforehand that I thought it was not a good idea. "Second of all, I told them that if they did that, then we would sever our relationship with them, and we wouldn't care for them when they came back. That's how we decided to address it."
Although the issue did not come up frequently in previous years, and does not come up frequently now, Diflo says, "we try to dissuade them and give them all the rationales for not doing it — sub-par care, not really know what the situation is with the donors and things like that."
Depending on the country where the organ is obtained abroad, "it could [increase the risk of] transmission of things like hepatitis, even HIV, or things like that from donors who aren't terribly well-screened. So, there are potential risks to the recipient that [he or she] might not anticipate," Diflo says.
UNOS policy on organ-related "tourism"
Shapiro notes that there are UNOS policy guidelines from its ethics committee for physicians regarding medical tourism patients returning to the U.S. for care. In such cases, Shapiro says the UNOS ethics paper on this issue notes it is advised that "In emergent situations, patients should be evaluated and treated according to the standards of care . . . while there may not be an obligation on the part of individual physicians to care for such patients in non-emergent situations, the medical community has an obligation to care for these patients."
The guidelines also suggest that if a physician declines to treat patients in these cases, citing conscientious objections, "the physician should help the patient locate an alternative physician, and may terminate the physician-patient relationship in accordance with local professional practice."
Mary Ann Baily, PhD, an economist and former research scholar at The Hastings Center in Garrison, NY, tells MEA that "this is such a difficult topic and such a can of worms. I wish this situation didn't exist, but it does. And it's really beginning to be clear that it really does, and it's getting worse," she says.