In an article at Salon Magazine, Frances Kissling writes:
The U.N. and the Council of Europe have together issued a new report on the horror of trafficking in human organs. [It] 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.
What does this mean for people like my partner, Kitsap River, and the millions of people like her who wait... and wait... and wait...
Kissling continues:
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.
The report, titled "Trafficking in Organs, Cells and Tissues and Trafficking in Human Beings for the Purpose of Removing Organs," contains several main points, but the two that are (to my mind) most noteworthy are:
- The principle of the prohibition of making financial gains with the human body or its parts should be the paramount consideration in relation to organ transplantation. All national legislation concerning organ transplantation should conform to this principle.
- The need to promote organ donation and establish organisational measures to increase organ availability. Preference should be given to deceased organ donation, which should be developed to its maximum therapeutic potential. In addition, there is a need to extend worldwide the organisational and technical capacity for the transplantation of organs.
(Emphasis mine.)
But here's the rub: long-term results from cadaver kidneys are uniformly poorer that those from living donors. 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.
And of course, not everyone who needs a organ transplant is likely to get one. In the United States alone, 95,150 patients were on the waiting list for a kidney, liver or heart transplant at the end of 2007. That far outstrips the number of kidney, liver and heart transplant procedures
performed in the country during 2007: 25,328 transplants. Similarly in the European Union, 58,182 patients were waiting for a kidney, a liver or a heart transplant while only 25,932 corresponding transplant procedures were performed. And in underdeveloped countries, there may not even be a waiting list, never mind the prospect of actually receiving a transplant.
In the European Union during 2007, more than 4000 patients died while waiting for a heart, lung, liver, or kidney transplant. That's about 12 people per day, every day. That's a 9/11 and more, every year.
So why is there such a disparity between need and supply? Part of the problem is that altruism just isn't working. But even more telling is the thought that living donation is being actively discouraged. As Kissing says:
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?
Buying a kidney — or any spare transplantable body part — is illegal throughout the world (with one exception, which I'll mention in a moment). So, how could one "buy" a kidney without violating the spirit, if not the letter, of the law. In her Salon article, Kissling comes up with three ideas: the first, which she calls "reciprocal generosity", would be 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; the second would be to offer a substantial sum — $50,000 or more — to charities of the donor's choice; the third, and most ethically questionable, would be to travel to where "transplant tourism" would be legal.
There's one place where selling one's organs is legal: Iran. It's also the only country where there are no kidney waiting lists, 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.
So what can the rest of us do?
The joint report notes there are two current strategies to increase the supply of organs in the "marketplace".
Two basic strategies have been proposed to provide incentives for people to sell their organs upon their death.
One strategy is simply to permit organ sales by allowing individuals to broker contracts while alive with persons interested in buying at prices mutually agreed upon by both parties. At least in an underground sense, markets already exist on the Internet between potential live donors and people in need of organs.
The other strategy is a "regulated" market in which the government would act as the purchaser of organs setting a fixed price and enforcing conditions of sale.
The ethics of this approach are questionable, but not insurmountable. Yet there's another strategy that's being tried in a few places: Presumed Consent.
There is another option for increasing organ supply that has been tried in countries such as Spain, Italy, Austria, Belgium and Singapore. These countries have passed laws establishing presumed consent. Under this system, the presumption is that a deceased person wishes to be an organ donor upon their death › basically an ethical default reflecting the desirability of donation. People who do not wish to be organ donors have to say so while alive by carrying a card indicating their objection or by registering their objection in a computerised registry or both. They may also tell their loved ones and rely on them to object should procurement present itself as an option.
What is important about this strategy from a bioethical perspective is that it is completely consistent with the existing bioethical framework governing organ and tissue procurement. Respect for individuals and voluntary, altruistic consent remains the moral foundation for making organs available. The main ethical objection to presumed consent is fear of mistakes in the event of consent being presumed when, in fact, either the individual had failed to indicate their objection or the record of their objection had been lost.
It's not yet clear whether this approach is improving organ supply, as it's not been in effect long enough to establish valid comparison.
At present, most states in the U.S. have an "opt-in" organ donation plan, which usually takes place when one applies for (or renews) one's driver's license. There's a better way. Writing in the New York Times, Richard Thaler said:
An alternative approach, used in several European countries, is an "opt out" rule, often called "presumed consent," in which citizens are presumed to be consenting donors unless they act to register their unwillingness.
In the world of traditional economics, it shouldn’t matter whether you use an opt-in or opt-out system. So long as the costs of registering as a donor or a nondonor are low, the results should be similar. But many findings of behavioral economics show that tiny disparities in such rules can make a big difference.
By comparing the consent rates in European countries, the psychologists Eric Johnson and Dan Goldstein have shown that the choice of opting in or opting out is a major factor.
Consider the difference in consent rates between two similar countries, Austria and Germany. In Germany, which uses an opt-in system, only 12 percent give their consent; in Austria, which uses opt-out, nearly everyone (99 percent) does.
Kitsap River has been working with some of our state legislators to draft and introduce bills that would make Washington the first "opt-out" state, but even under the best of circumstances this will take years, and there may be all too few remaining to her if she can't get a transplant.
In her Salon article, Kissing notes that the Joint Report may be trying to use current laws against human trafficking to prohibit any form of government compensation or reward for organ donors. However, she concludes:
[A]n 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?
Is there a middle ground?
Kissing believes so. At the very least (she says), "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." (Emphasis mine.)
Y'know, that sounds like something all of us could use.