The Anatomy of the Organ Trade
Our conversation with Ric Esther Bienstock, director of Tales from the Organ Trade, about the morally ambiguous world of organ trafficking.
There is a roaring illegal trade in organs going on, with networks that extend from the suburbs of Toronto to the slums of Manila. But does the illegality make each person involved morally culpable to the same degree? We talked to the director of Tales from the Organ Trade, Ric Esther Bienstock, about what it was like to enter the morally ambiguous world of organ trafficking, and whether the stories she heard clarified or complicated her own beliefs about the ethics of selling or buying a chance at a better life.
What do you think is the most common misconception of who and what the black market organ trade involves?
The most common misconception in the world of organ trafficking is the idea that people wake up in a bathtub full of ice with a kidney missing. This is an absolute urban myth. The more complex issue that I explore in the film is that of coercion. The media tends to report on this issue in very black and white terms, so the impression one gets is that organ sellers are forced to sell, or that their organs are “stolen.” Even in the Kosovo organ trafficking case that I investigate in the documentary, the people who sold their kidneys are characterized by the prosecution and the media as having been coerced. They are portrayed simply as victims.
I challenged the prosecutor as well as several bioethicists on this issue of coercion. I told them that I’ve spoken to dozens and dozens of organ sellers and each of them told me that they did this willingly. In fact, they were the ones seeking out the organ brokers. The prevailing view on this is that they are “coerced” by their own poverty and desperation. Of course that’s true. No one who isn’t desperate for cash will sell a kidney. But one of the questions I hope to raise in the film is: If people are making the choice to sell a kidney out of economic desperation, does it invalidate this as an act of free will? And do they have the right to make this decision about their own bodies? Also, if the act of selling can liberate them from poverty, do we have a right to condemn them to the poverty they are trying to escape? Having said that, there is no doubt that the black market organ trade is rife with exploitation. Virtually all organ sellers are shortchanged by brokers – who are often grassroots recruiters – and who barter in kidneys to make a quick buck. Furthermore, there is no guarantee the organ donors are properly tested and should things go wrong (and they often do) these sellers have no safety net.
Another misconception is that the organ trade is driven by rich Westerners who have no qualms about travelling to developing countries to harvest the organs of the poor. But generally, this is far from reality. The trade is driven by affluent (often middle class) Westerners who are desperate to live. But it is also driven by locals who can afford the transplant. Filipinos buy organs from Filipinos. Chinese buy organs from Chinese, and Indians buy organs from Indians. This is not only a trade driven by the West. Those that come from “the West” are often those who have been taken off the transplant list at home because their health has deteriorated during their years of waiting on dialysis. So they are no longer eligible for a transplant. They either find a kidney overseas, or they die. And most of them want to believe that they are somehow helping the people who are selling their kidneys. This is sometimes self-serving rationalization, but I guess it’s human nature. And sometimes, as you will see in my film, it’s true.
Clearly the buyer and seller stereotypes don’t hold. What about the idea that is only poor men selling their organs to support their families?
Both women and men sell their kidneys. In India there are villages of women who all bear the scar of having sold their kidneys.
So is the fact that the functioning of the organ market depends on a lot more than poor men being forced to sell their kidneys the most important take-home from the film?
If there’s one message that I hope the film succeeds in delivering, it’s that this is a complex issue, often misrepresented by the media as pure and simple exploitation. What I discovered while making this film is that it’s a much more nuanced issue, and one that won’t simply be resolved by trying to shut down the black market. We can only succeed in doing so, if we find solutions for those in need of a transplant, and opportunities for those who desperately need the money. This film is as much about poverty as it is about the organ trade.
The ethical ambiguities of the organ trade come through strongly in the film. Where do you come down personally on the morality or immorality of selling or buying an organ on the black market? Did your position change on account making this film?
There are no legal ambiguities in the organ trade. It’s illegal to buy or sell a kidney. Period. But my experience making the film was a real emotional and ethical roller coaster. I think that the black market has to be shut down – as a “black market.” The black market potentially leaves both the organ sellers AND the recipients vulnerable to abuse and to sub-standard medical practice. What threw me off while filming was the sudden realization that, for some people, selling a kidney might, in fact, help them out of a life of relentless subsistence existence. At one point during the shoot we were following a young man trying to sell his kidney. His dream was to move out of the urban slum where he and his wife and young child live in a borrowed hut, into a small house in a rural area where he could farm and raise chickens. The kidney broker he was working with got scared by our cameras and, at the last minute, told him the operation was cancelled. In fact, she had switched to another donor with the same blood type. Instead of feeling like I had saved him, I felt like I had robbed him of what might be his only chance to better himself. I was surprised at my own feelings and that’s when I decided that I wanted to take viewers on the same ethically ambiguous journey I took while making the film. There is no simple solution, but closing our eyes to it and just trying to shut down the black market will only drive it further underground.
I need to be clear that this is a very different issue than the stories emerging from China where they are executing prisoners for their organs. Or in villages in India where moneylenders are forcing their debtors to sell their kidneys to repay them. These are not ethically ambiguous circumstances. But most of the organ trade takes place in the more ambiguous world of desperation on both sides of the equation.
Are there important differences between the black market organ trade and other illicit economies, such as human trafficking or the global drug trade?
I don’t think human trafficking or the drug trade have very much in common with the organ trade even though they’re often lumped together. There is no analogy there. The interesting thing about the organ trade is that the act of giving an organ is considered heroic in our society. And the medical risks of doing so are considered acceptable by the medical and ethical establishment, or they wouldn’t encourage and accept altruistic donation. The point here is that something changes when you add money to this equation. At the end of the day, donating an organ is a “good” act. It saves a life. So the question is, how and why does money change the equation? I think a closer analogy to kidney selling is surrogate motherhood. Pregnancy and kidney donation both have about the same medical risk. And in both cases, the outcome for the recipients (of the baby or the kidney) is positive. The question always remains – is it merely exploitative or is there a model that is ethically acceptable? I don’t have the answer, but I think it’s a question that has to be explored and not shut down in a knee-jerk fashion. Our medical ethics continue to evolve with advances in medicine. Stem cell research has forced us to reconsider many aspects of our existence. I’m not an expert in these issues, but I would hope that those who are will continue to discuss and debate openly.
How would you characterize the role of the Internet in the black market organ trade? Has it made it easier or harder to track and regulate?
The Internet has certainly played a role in the black market, but, based on my experience filming, it has changed over time. There was a time when there were numerous websites offering various operations and what is called “transplant tourism” all over the world. Most of these sites are shutting down as the efforts to curb the trade in human organs become more organized and as more cases of black market operations are being prosecuted. Most of the people I’ve spoken with who went overseas (people who appear in the film and many others who are either on the cutting room floor or who didn’t want to participate in the documentary) found their “brokers” through friends or friends of friends or through contacts in dialysis centers. Having said that, the Internet, including YouTube and Facebook are full of appeals from people in dire need of an organ looking for someone to help them. It’s heartbreaking listening to or reading the stories of family members trying find donors for their loved ones as you can feel the absolute desperation in their pleas. This is not about the black market, but rather appealing to altruistic donors. And there are many examples of people who have found their donors in this way. So the Internet continues to be a platform in which people try to find solutions.
And what about using the internet to help in tracking and regulation?
I think tracking the black market is very difficult. Doctors in the West are best able to collect data as they see patients that come back from overseas with a new kidney. And if they didn’t get transplanted at home, then clearly, in most cases, they went the illicit route. Regulating it is another story entirely. In countries that claim to have shut down the trade, there are still cases. In the Philippines, for example, affluent Filipinos can still buy their kidneys by having the “donor” claim that they’re giving their organ altruistically. Even in the West, there is no way we can track who is getting paid if they tell the ethics committee that they are donating out of the goodness of their heart. None of these illegal transactions are currently being tracked by anyone because they are untrackable. I think the World Health Organization’s estimate that one kidney is sold every sixty minutes is a gross understatement. In “Tales From the Organ Trade” we film someone who sold his kidney on Craigslist. But that’s not what he told the hospital. So there are lots of illicit operations taking place around the globe that are slipping through the cracks.
What does the evolution of the black market organ trade reveal about the impacts of globalization on developing versus developed countries? If and how are the flows of donors and recipients likely to change in future?
The evolution and expansion of the organ trade is a matter of supply and demand. And the demand side of the equation is growing rapidly. There was a time when there were fewer candidates for transplantation because tissue matching had to be much more exact. Now, with the anti-rejection drugs and the cocktails of medication people can take, it’s easier to match people. Also, we’ve expanded the criteria for who is eligible for a kidney. As we increase the ages of those we’re willing to perform transplants for, we increase the need for kidneys. Also, diabetes, the leading cause of kidney disease, is the fastest growing disease in many countries right now. Finally, even as we push for more people to sign their donor cards (which is absolutely necessary since, besides kidneys, we still need lungs and hearts and other organs that can’t be donated until death) you have to die in a certain way for your organs to be useful. With seatbelt laws, for example, there is less mortality on the highways. We simply don’t have enough people to donate even if we all signed our cards. So the demand will continue to increase at breakneck speed. As for supply, unless we can eradicate poverty, there will always be people willing to sell their kidneys.
I guess our ability to travel across the globe to procure a kidney in a developing country can be called an impact of globalization. But so much of this trade also takes place by locals, with locals, that it’s more an indication of the staggering chasm between the haves and the have-nots. As I saw with the gentleman who sold his kidney in the U.S. on Craigslist, this isn’t something that only happens on foreign soil.
So, with globalization fueling the creation of extreme income inequality around the world, is there any reason to hope that the trade’s exponential growth trajectory might change?
I think one of the great hopes for the future is that medical science will be able to bio-engineer a kidney and potentially other organs. That would be the ideal solution.
Do individual states have any ability to influence the future of the black market organ trade? In the course of making the film, did you come across a state who’s approach to this issue struck you as particularly smart or forward-looking?
I think individual states are trying to influence the future of the black market. In 2008, more than 100 national and international medical organizations and other bodies, including some government agencies, endorsed the Declaration of Istanbul on Organ Trafficking and Transplant Tourism. The declaration is a document that advocates the prohibition of transplant commercialism, transplant tourism and organ trafficking. Executive members of this initiative have been travelling the world advocating for every country to develop it’s own cadaveric organ donation system and to shut down the black market. I think all this effort is laudable, but it’s not working. The black market is just being driven further underground. In many countries where they proudly report that no foreigners can get transplants, there are still operations going on in the dark of night in hospitals in the provinces where all it takes is a little bit of cash to get the medical staff to participate and the security staff to turn a blind eye.
Even more troubling are the countries that claim to have shut down the black market but are actually skirting the law in another, more dangerous way. Their hospitals accept recipients as long as they bring their own donor. So recipients find their donors in developing countries and travel to a medical center in Egypt, for example, to get their transplant. Then everyone returns to their home country. The transplant is not tracked as illicit. And the donor has absolutely no access to the hospital or any medical care post op. The black market is flourishing in many countries including Sri Lanka, Pakistan, Egypt, and Columbia, and it is starting to pick up in Iraq at the moment.
And what about countries setting standards for best practices?
Spain is a great example of a country that has been very proactive in solving the organ shortage. They have what is called an “opt-out” system or “presumed consent.” This means that everyone in the country is presumed to be an organ donor (on death) unless they actively opt-out and request NOT to be a donor. This has increased the amount of donors considerably and they have a much shorter waiting list. Of course, an initiative like this has to be coupled with a very well coordinated system that works within each hospital to identify patients that are potential donors (meaning clinically brain dead, for example) so that they can be matched before they expire. Grisly, but true. There are other countries with the opt-out system, but it hasn’t been implemented in North America.
One thing is very clear to me. We will not be able to eradicate the black market if we don’t find a solution to the organ shortage. When it comes to life and death, if someone has the wherewithal, they will choose life. And how can we judge them? What would each one of us do faced with a similar life or death situation?
Did you notice any differences in the tenor of the debates over the black market organ trade in North America versus Europe?
It’s not really a debate in either region because everyone is in agreement that the black market is objectionable. While there are several serious thinkers, ethicists, and doctors trying to propose an ethical framework for incentivized donation, there is no traction for this anywhere in the world but Iran. So there isn’t a robust debate for the moment. Iran does allow compensation for donors. And there is no one on the waiting list. Everyone who needs a kidney gets a kidney. I tried to get into Iran but they wouldn’t grant me a visa. But I’ve heard two distinctively different takes on Iran – both from reliable sources: the first is that the system is not working for the donors because they are stigmatized and no better off financially soon after they donate their kidney because the money runs out and they are back at square one. The other source tells me that young men in Iran are selling their kidneys for a down payment on a house, and that this is common practice and it’s allowing them to start a life with a roof over their heads.
It seems like there are no shortage of cases which complicate the assumption that donation with compensation is a uniformly bad idea.
I spoke with an Indian transplant surgeon who challenged me with a case that he had recently confronted. A father came to him wanting to sell his kidney to raise money for a daughter who was ill. He needed the funds for her treatment. The daughter is the sole breadwinner in the family and if she can’t work, the entire family will end up on the street. He had to refuse this man’s kidney because it is illegal for him to accept it. The daughter didn’t survive and these parents are now living on the street in abject poverty. Ironically, if his daughter had kidney failure, he would have been allowed to give her his kidney. But he wasn’t allowed to sell it to save her life.
This example really forced me to think about the organ trade in very different terms.
Check out Tales from the Organ Trade at Hot Docs:
April 28 at 7:00pm – Bader Theatre
April 29 at 1:00 pm – Toronto Bell Lightbox
May 2 at 4:00pm – Scotiabank Theatre