There are currently 96,559 candidates on the list awaiting a kidney transplant in the US, and over 1500 people on the waiting list in Australia. In major cities in the US, the average wait is five to ten years. In Australia, the average wait is over three years. For those on the list, there are meagre options to get off it. They could receive a kidney donation from a relative or a friend. Internationally, some have opted for a murkier route. In 2012, the World Health Organisation reported an influx of people taking “transplant tours” to countries such as China, Pakistan or India for often poorly regulated and illegal operations. (Currently, Iran is the only country where it is legal to sell your organs, but not to foreigners). The WHO estimated 10,000 operations involving “black market” organs per year.
Photo Illustration by Elena Scotti/Gizmodo/GMG
The numbers are fuzzy, but a 2009 study at UCLA showed that out of 33 transplant tourists, 17 returned with infections, and nine had to be hospitalised. There are many horror stories of organ trafficking: In China, a suspected organ theft of a young boy’s eyeballs; migrant workers being promised “a new iPad!” for a kidney; and the previously widespread, since outlawed and reportedly ongoing practice of organ harvesting from prisoners.
But there are rare, new alternatives of doctors incentivising altruistic donations. One such promising idea is UCLA’s new “take-a-kidney-leave-a-kidney” voucher program. It solves the problem of what doctors are calling “chronological incompatibility” — friends and family who would be willing to provide kidneys to relatives who might not need one until after the donor is dead or available to donate. Now they can pay their kidney forward and get a voucher for their recipient, who will be able to move up the transplant list. So far, the program has spurred at least 25 donations. Yet, 25 donations pales when you consider that 13 Americans died today, and every day, waiting for a kidney, according to the National Kidney Foundation.
In a perfect world, everybody goes to a place like UCLA and gets excellent care, along with a generous and healthy relative or friend. But this is not a perfect world. And like illegal organ trafficking, a decriminalised and regulated organ commerce worldwide would still likely to exploit economically disadvantaged people. All this considered, should we be allowed to put our kidneys on the free market? This week on Giz Asks, we talked to bioethicists, disagreeing doctors and the World Health Organisation about their opinions.
Carolyn Neuhaus, PhD
Research Scholar at The Hastings Center (a bioethics research institute)
There is an argument that people are already oppressed and will sell their kidneys regardless of the regulations. So legalising kidney vending might at least give them legal protections and better healthcare. Do you think that legalising kidney vending would, in the end, create better overall protections and health outcomes?
I see pros and cons on both sides of the argument, which makes me uncomfortable taking a hard stance. There’s a lot of grey here, and it shouldn’t be an easy decision.
There is a lot of evidence that creating a legitimate market, with rules and regulations, would serve to protect people who are already inclined to sell their organs. I appreciate that argument, but I think there are other ways to increase the supply of organs that we haven’t totally tapped into. For example, by better preserving the bodies of people who die in car crashes and are organ donors but are not eligible because of the time lapse in getting them to the hospital. There is also research in regenerate tissue, but it’s very speculative and far off and is not going to happen today.
But still, I’m more on board to work out those solutions. I think we need to turn over those stones before going the route [of selling kidneys].
Is it harder to make that argument to someone who’s going to die?
That’s very hard to do, and I want to support people who are in very painful situations. But we have to acknowledge that buying an organ on the black market comes with health risks for other people as well and contributing to a system that’s also serving to harm people. [One system] which is great is the network of sharing. For example, my brother needs a kidney, and I’m not a match, but you could go into a network, and I would donate to someone else. I think looking at alternative ways to donate to loved ones or to people who have died might be under-utilised. I would imagine that conversation should come up every time someone goes on transplant list. But I’m not privy to those conversations.
What’s the moral dilemma, when you consider that surrogacy can be just as dangerous as donating a kidney?
A conceptual question worth probing is: “To what extent is carrying a baby different that donating a kidney?” Are the risks the same, what are the psychological effects, what are the risks down the line?
The moral relationship between baby and parents versus the moral relationship [between donors]… to what extent it is or should [kidney donation] be seen as a moral relationship, versus a transactional relationship between sellers and participants?
Tarik Jašarević
Media Relations, World Health Organisation
Quoting from the “WHO Guiding Principles on Human Cell, Tissue and Organ Transplantation” endorsed by the Sixty-third World Health Assembly in resolution WHA63.22 on 21 May 2010:
Cells, tissues and organs should only be donated freely, without any monetary payment or other reward of monetary value. Purchasing, or offering to purchase, cells, tissues or organs for transplantation, or their sale by living persons or by the next of kin for deceased persons, should be banned.
The prohibition on sale or purchase of cells, tissues and organs does not preclude reimbursing reasonable and verifiable expenses incurred by the donor, including loss of income, or paying the costs of recovering, processing, preserving and supplying human cells, tissues or organs for transplantation.
Jašarević’s commentary:
Payment for cells, tissues and organs is likely to take unfair advantage of the poorest and most vulnerable groups, undermines altruistic donation, and leads to profiteering and human trafficking. Such payment conveys the idea that some persons lack dignity, that they are mere objects to be used by others.
Besides preventing trafficking in human materials, this Principle aims to affirm the special merit of donating human materials to save and enhance life. However, it allows for circumstances where it is customary to provide donors with tokens of gratitude that cannot be assigned a value in monetary terms. National law should ensure that any gifts or rewards are not, in fact, disguised forms of payment for donated cells, tissues or organs. Incentives in the form of “rewards” with monetary value that can be transferred to third parties are not different from monetary payments.
While the worst abuses involve living organ donors, dangers also arise when payments for cells, tissues and organs are made to next of kin of deceased persons, to vendors or brokers, or to institutions (such as mortuaries) having charge of dead bodies. Financial returns to such parties should be forbidden.
This Principle permits compensation for the costs of making donations (including medical expenses and lost earnings for live donors), lest they operate as a disincentive to donation. The need to cover legitimate costs of procurement and of ensuring the safety, quality and efficacy of human cell and tissue products and organs for transplantation is also accepted as long as the human body and its parts as such are not a source of financial gain.
Incentives that encompass essential items which donors would otherwise be unable to afford, such as medical care or health insurance coverage, raise concerns. Access to the highest attainable standard of health is a fundamental right, not something to be purchased in exchange for body parts. However, free periodic medical assessments related to the donation and insurance for death or complications that arise from the donation may legitimately be provided to living donors.
Health authorities should promote donation motivated by the need of the recipient and the benefit for the community. Any measures to encourage donation should respect the dignity of the donor and foster societal recognition of the altruistic nature of cell, tissue and organ donation. In any event, all practices to encourage the procurement of cells, tissues and organs for transplantation should be defined explicitly by health authorities in a transparent fashion.
National legal frameworks should address each country’s particular circumstances because the risks to donors and recipients vary. Each jurisdiction will determine the details and method of the prohibitions it will use, including sanctions which may encompass joint action with other countries in the region. The ban on paying for cells, tissues and organs should apply to all individuals, including transplant recipients who attempt to circumvent domestic regulations by travelling to locales where prohibitions on commercialization are not enforced.
Dr Gabriel Danovitch
Medical director of the Kidney and Pancreas Transplant Program at the David Geffen School of Medicine at UCLA, and one of the architects of the Declaration of Istanbul, a statement of principles against organ vending formed by the Transplantation Society and endorsed by 100 organisations from 78 countries
There are many reasons [why you can’t sell your kidney.]
You’re giving a part of your body away. You don’t have to be a doctor to imagine that, if you were so desperate you had to sell your kidney, would you feel good about yourself? Medicine is not mechanics. We’re human beings, it’s to improve people’s lives, certainly not make them worse.
Nowhere in the world has robust programs in altruistic programs in concert with paid donation. That’s why Iran is trying to stop their program. Relatives weren’t donating. If I needed a kidney, and one of my kids were to offer me a kidney, I would probably shed a tear, give them a hug, and accept it. But I could imagine a situation where, if I don’t have to make my kids go through that, I would buy one.
If you’re donating a kidney, that requires a trusting relationship between the doctor and the donor. I need to know things. If I’m giving to my son or wife, I’m not going to lie about my health because I don’t want to hurt my wife. The donor doesn’t care about me, he just wants to get his money.
What we need to do is make it easier for altruistic donors to donate. Remove obstacles, pay for expenses, flights, incidentals, meals, hotelling, taking time off work. There’s less donations by the poor than the rich because it’s just harder for them.
Any attempt at so-called regulating… a market, by definition, is not regulated. Markets don’t like regulations. Let’s say we were to allow a regulated market, and a donor would get $30,000. I’m just throwing this out. Why wouldn’t Singapore say you can get 50? In Doha you can get 80? And why wouldn’t the donors go around the world to get the best price? If we were to do that in the United States, it would be a disaster.
I’ve been working for the last 11 years on the Declaration of Istanbul to protect the rights and health of potential kidney donors. It’s “two steps forward, one step back,” but things are better now than they were a decade ago. The idea that we are responsible to protect donor health is one that is universally accepted.
There’s been definite progress in China. We don’t know everything that’s going on there, but we know that they are on a better track. Foreigners used to pile in there to get donations. It was disgusting, the crimes against humanity. They’re not piling in there anymore. China and the Philippines have basically closed off and improved, things have gotten much better in India and Israel, but now Egypt is the major center. That’s the “two steps forward, one step back.” But bad press helps to embarrass countries.
Dr Arthur Matas
Professor of Surgery and Director of the Renal Transplant Program at the University of Minnesota, Minneapolis. (Dr Matas does not directly advocate for cash-for-kidneys, but rather incentives such as tax breaks, university tuition or job training, as well as reimbursement for lost wages and health care.)
[Dr Danovitch] and I are friends. We have had many public debates on this issue. We’ve been over this together a million times.
There’s no data that donation goes down [when selling kidneys is legalised]… And I would argue that if the total number of donations goes up, who cares? Maybe you’re eliminating some of the people who feel pressure to donate because there’s no other choice. That’s why I’ve always argued that we need to do a trial to find out some of these things; if the total number of donations goes down, then the answer is clear. But what if the total number of spousal or relative donations went down ten per cent, and the total number of donations went up three hundred per cent. Would it matter?
The business about not taking care of your health… I just don’t buy that. We do an extraordinarily detailed psychosocial and medical exam on all of our donor evaluations. If you apply the same standards to the incentivized donor, there wouldn’t be a difference. Gabe would say “well, people will lie.” Well, people may lie today because they want so badly to donate to their brother.
There have been 60,000 people who have been taken off the waiting list in the last ten years because they either died or became too sick to transplant. [Author note: The US Department of Health and Human Services puts that figure at 76,632 when counting 2007-2017].
We all agree that unregulated systems, which is the transplant tourism that people are worried about, has failed. That’s because there’s a broker, a middle man who’s making a profit and abusing both the seller and the recipient. I’m talking about a regulated system where the government supplies the incentive, the standards for accepting a donor are exactly the same as they are for our donors today, and the kidney goes to the number one patient on the waiting list so it’s not the rich buying from the poor — the kidney just goes who whoever’s at the top of the list. By the way, the majority of renal transplants are to poor people, not rich people. [Due to diabetes] and poor healthcare, access to care, and hypertension. If it’s not treated, could create kidney failure.
You could argue that people will do this anyway, so they should benefit from getting health care and legal protections. Do you find a disparity in the different social spheres where this issue is discussed?
Well, no, but most of my conversations are with medical groups or students, but you know… after all, we do allow surrogacy, and allow incentives for eggs, sperm, body parts. We already practice this in this country and others… The risk of carrying a baby for nine months is no lower than being a kidney donor. I haven’t measured it exactly, but the risk of being a kidney donor in a highly selective group of healthy people is small. It’s not zero, but it’s small.
Dr Jeffrey Veale
Director of the UCLA Kidney Exchange Transplantation Program and co-founder of the “Chain,” the “take-a-kidney-leave-a-kidney” program
It seems one of those things that money shouldn’t be part of.
I’ve seen two patients from transplant tourism, and it’s not good. They got botched jobs, one lady came back and died. I can tell you, it’s just not the way to go. And if you as a doctor had a [prospective] kidney donor with a kidney stone or high blood pressure, you might be tempted to say yes, if you know that they really needed the money.
There are 15 million people with chronic kidney problems and they might have a willing donor now, but because of pregnancy or inevitable death they might not be able to get one. I see it all the time, people who are willing to give but aren’t compatible. I saw a husband who wanted to give to his wife but isn’t compatible — now he can do it as part of the chain or a swap program. In another case, I saw two sisters who loved each other very much; one sister looked like she wasn’t going to be on dialysis for five years, and the sister was willing to donate then, but likely wouldn’t be able to in five years because of pregnancy and because she was moving to another country. We just have to get in the mindset that people are just chronologically incompatible.
I think we may be able to win this game. In fact, the wait list is going down — I can’t remember the wait list going down since I’ve been working in this field.