Donors should be rewarded for their kidneys

Millions of people like me need kidneys and there aren't enough. The government should give benefits to live donors

Published October 26, 2009 12:20AM (EDT)

The U.N. and the Council of Europe have together issued a new report on the horror of trafficking in human organs. The report, titled "Trafficking in Organs, Cells and Tissues and Trafficking in Human Beings for the Purpose of Removing Organs," joins a stack of other reports that all repeat the same mantra: The body or its parts cannot be used for financial gain. It echoes the rightful condemnation of the traffickers who use poverty to convince poor people to give kidneys they are not healthy enough to give to some better-off person in exchange for a few thousand dollars. But like the other reports it also infers that the only ethical transplant policy is one exclusively based on altruism, and refuses to so much as explore whether there might be some forms of compensating donors for their generosity that would be ethical and fair.

Worldwide, 1 million people die each year from end-stage renal disease. About 600,000 live in such undeveloped countries that even dialysis is not available. But about 40 percent of the 1.2 million people on dialysis will also die and most of those lives could have been saved had a healthy kidney been available for transplant when they were first diagnosed. Right now the shortage of kidneys means that just under 70,000 people a year will get a transplant. The magnitude of this problem is lost in the COE/U.N. report's rather single-minded focus on brokers and middlemen, the traffickers who are responsible for between 3,000 and 7,000 black market kidney transplants each year. When you realize that 1 million people need kidneys, it becomes clear very quickly that the problem is huge and the black market is small, and altruism is not enough to bridge the gap between them.

Everyone with kidney disease who has some control over their lives and some options confronts the reality of supply and demand. The way the system works in the U.S. is that patients who want to get a transplant in a timely manner are on their own to recruit a living donor. If you count on getting a deceased person's kidney off the waiting list, your chances of dying on dialysis are higher than getting a kidney. I'm one of those people. I'm not yet in renal failure or on dialysis but I'm aware that the clock is ticking. My prospects for a living donor are great, since many friends have offered, although the first few tested did not make it. I need a younger person with stronger kidneys. So I must ask: Is there a way I could pay someone for their kidney that would be non-exploitative even if illegal? Of course there is.

I've considered three scenarios in which I would pay for a kidney. Two involve a degree of altruism combined with financial interest and the third is purely in the economic interest of the donor. Scenario one developed in response to the reaction of colleagues in the Latin American women's movement to my search for a donor. Several friends offered to find a colleague who would like to give me a kidney but could also benefit from financial support for their work in the movement. So many people work for justice for organizations with little money and make next to no salary and have no pension. My friends felt that I could help such a person with a contribution to their work or an investment in their pension. I loved this idea. Reciprocal generosity. I would rather receive a kidney from someone who needed my help than from a friend who is well off. The second idea was to offer something meaningful to my well-off friends -- I would contribute $50,000 to the charities of their choice. Their donation of a kidney would result in two goods -- I would get a kidney that would enable me to live and a charity would be able to do better work.

The third option would put me in the realm of organ trafficking. I'm a well-connected, international person. I could beat the system and find a colleague in the health field in the countries where transplant tourism occurs. I could insist on a donor who meets U.S. medical standards, be admitted to a good hospital and get good care. In return, I could meet the donor's real need. I have enough money to lift the donor out of poverty and into the middle class and I have enough money to guarantee any continued healthcare the donor would need if there were complications from the surgery. I could not promise the donor that he or she would not die, but I cannot promise that to an altruistic donor either. And the risk of death is considered small enough that kidney transplants are legal in the U.S.

None of the above options are optimal ways of saving my life or anyone else's. And I am painfully aware of my financial privilege and how unfair it is to others. But people like me are forced to think about such options because altruism is not enough -- because so few people have been convinced or motivated purely by the love of others to donate a kidney. The very people who are working to motivate donation via government transplant programs and nonprofit organizations have not themselves donated kidneys. Primary-care doctors routinely discourage healthy patients who want to donate a kidney from doing so. Two very healthy friends who told their doctors they were considering donating to me were told to forget it -- that they should not take the risk. Neither doctor provided any information to them on what that supposed risk was. In a survey of primary-care physicians in Spain, only 21 percent approved of living kidney donation. The leading U.S. ethicist on organ transplantation, Arthur Caplan, a coauthor of the U.N. report, describes living donation as "maiming." Caplan has said that the only possible justification for allowing someone to decide to "maim" themselves is if "the donor chooses to undergo the harm of surgery solely to help another." Does Caplan think that conceptualizing living donation in this way, as something akin to martyrdom, is going to encourage people to donate organs?

There is no doubt that transplant policy needs to have as a top priority protection of donors against exploitation and fairness in the distribution of organs, but it must also recognize that the lives of millions of potential organ recipients are at stake. While a fine philosophical argument can be made that allowing people to receive direct compensation from the government in exchange for organ donation is fair and just, the concern we rightly have for the potential abuse of such a system and the vehemence of the professional and medical lobby's opposition to such a system speaks against it. But there are viable policy positions that lie somewhere in-between the demand for absolute altruism and the drive toward a free but regulated market in organs. Just as we need to get out of our head the idea that organ donation must be pure, we should also shed the market mentality. 

What might such a middle ground look like? The foundational principle would be generosity. The act of giving a kidney or part of one's liver is an inherently generous act. Right now, it is treated in public as extraordinarily generous and in private as so crazy and dangerous no government should encourage it. A more temperate view would be for society to honor, and be generous toward, those who give organs. At a minimum donors should receive free and comprehensive health, disability and life insurance following transplant.

Sound sensible? Organizations like the National Kidney Foundation actually oppose such largess. They operate on the principle that a donor's altruism should be so pure that she is not in any way better off as a result of transplantation and if insurance is provided it be limited to insurance for medical issues directly related to the transplant. Other possible acts of generosity toward donors might include tax credits and educational benefits similar to those received by military personnel. None of these should be conceptualized as payment for organs or as an incentive to convince or coerce people to give an organ. These are instead things that we should do out of a sense of fairness and appreciation for a good deed, whether or not they result in a single additional organ being donated.

Instead, we have the new U.N. report, which is no more helpful than past reports when it comes to solutions. It acknowledges that we will not end organ trafficking unless we end the shortage of organs for transplantation; it acknowledges that the methods tried up to now have not worked. It then insists that the same principles that have led to the failure to solve the problem and the same tired half measures that have failed are the only ones we can use. If the U.S. government adopts the values and solutions outlined in this report, it will have condemned people with ESRD to death as surely as has our policy in Darfur.

Perhaps the most damaging recommendation of the report is its insistence that efforts to expand organ donation should focus on more organs from dead people and that living donors should be viewed as a "complement" to that effort. There are simply not enough healthy kidneys available from dead people to meet the need. In the U.S., which has a sophisticated and efficient system for gaining consent to use deceased kidneys, about 10,000 are used annually in transplantation. Perhaps improvements in our consent process could yield another 5,000 kidneys. With 345,000 people on dialysis, 15,000 kidneys is a drop in the bucket.

Moreover, it is ethically and medically irresponsible for the U.N. report to favor the use of kidneys from deceased persons over living donation. The report notes that of the three types of kidneys used in transplantation, kidneys from living donors last the longest. More than 80 percent are still working after five years. Only 69.8 percent of kidneys from deceased persons are still working -- and in a growing category of deceased kidneys that come from people who are much older or had conditions such as high blood pressure that would have disqualified them from use 10 years ago, the survival rate goes down to 55.1 percent.

How can the U.N. and the Council of Europe claim that such results are "excellent" and that we should favor deceased donation over living donation? Such advice might make sense if transplants had high complication rates for the donor. In fact, they are remarkably safe. The death rate in kidney removal is three for every 10,000 procedures -- fewer than in liposuction. Other complications are rare. If the transplant field were not tied in knots by the ambivalence toward the ethics of living donation, it would strongly urge that living donation be the method of choice and efforts should be focused on increasing living donation and on educating health professionals and the public about its safety and efficacy. Instead of spending more millions of dollars on campaigns to get people to sign organ donor cards for donation when they die, let's urge people to donate now.

The most confusing sections of the report attempt to address a difference between "trafficking in organs, cells and tissues" and trafficking in human beings "for the purpose of removing their organs." The latter is clear and well-defined in various U.N. and Council of Europe documents and the report is right to absolutely and unequivocally condemn trafficking in persons for the purpose of removing their organs as an egregious violation of the "prohibition of making financial gains with the human body or its parts."

But a problem is created if the report -- and it is unclear on this point -- wants to use trafficking prohibitions to criminalize any form of compensation or reward offered by government to organ donors. The U.N.'s 2000 anti-human-trafficking protocol defines trafficking as "the recruitment, transportation, transfer, harbouring or receipt of persons, by means of threat or use of force or other forms of coercion, of abduction, of fraud, of deception, of the abuse of power or of a position of vulnerability or of the giving or receiving of payments or benefits to achieve the consent of a person having control over another person for the purpose of exploitation." Only one country has eliminated kidney waiting lists -- Iran -- and it has accomplished this by offering those who give kidneys free health insurance and a government payment of less than $2,000. (At the same time, it has criminalized brokers.) Ninety percent of kidney transplants in Iran are from living donors. Because there is no shortage of organs, poor people with renal disease get organs as frequently as the wealthy.

And an expansion of the prohibition on financial gain related to the human body or its parts cannot be the position of the Council of Europe, for its member states have already approved using the body for financial gain. They have legalized prostitution in the Netherlands, Germany, Austria, Switzerland, Greece, Turkey, Hungary and Latvia while criminalizing trafficking in sex workers. It also cannot be the position of the U.S., which allows the sale of eggs and sperm for fertility treatments and in some cases the use of eggs for embryonic stem cell research. Third parties from doctors and hospitals to commercial drug companies have patented other people's genes with a view to making profits, and this is legal in the U.S. Volunteers for drug trials or other medical experiments are paid for their participation. Would the authors of the report like to see all these activities legally banned and punished? Or are only organ donors expected to be altruistic in the extreme?

No doubt some special circle of hell is reserved for traffickers in human beings, with a particularly nasty corner dedicated to those who prey on the poor and rob their organs. But it is not enough to wring our hands or shake our fists at these people. It is not enough to put them in jail and take away as much of their money in fines as we can. We must do something meaningful to motivate people who are in good health and want to save lives to see living donation of a kidney as something they can safely do now, not after they die. And we need not shy away from being generous to such donors in return. The idea that generosity is coercive is absurd. Sadly, no international body has yet figured this out and the reports they issue and policies they suggest are not only not helpful, they are damaging. 

By Frances Kissling

Frances Kissling is a visiting scholar at the Center for Bioethics at the University of Pennsylvania. She is the former president of Catholics for a Free Choice.

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