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| Home > News & Publications > Publications Download > Lahey Clinic Medical Ethics Journal |
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Soliciting organs on the InternetThe Medical Ethics Forum from Harvard Medical SchoolSuppose you need a kidney transplant. You will probably be put on the waiting list at your local transplant center and maybe the waiting lists in some other regions as well. But the waiting times are long, you are impatient and you want a kidney soon. So, you think about asking others to see if there might be someone who is willing to undergo major surgery and to give up one of their kidneys on your behalf. You start by asking your close family members if they would be willing to give you a kidney. When that doesn't work out, you begin to widen your search. You ask members of your extended family and acquaintances, but still without success. And then you learn that there is a Web site, www.MatchingDonors.com, where for a fee you can advertise your need all over the world and hope that a generous stranger will read about your plight and come to your rescue. All of these options are equally legal, but they don't strike everyone as being equally ethical. In general we are most comfortable when the donor and recipient share a strong relational bond, as with a family member or a close friend. As we move outside of that circle, however, we become increasingly concerned that the donor's choice may not be sufficiently autonomous or motivated by altruism. We also worry that these practices might undermine one of the most important principles of organ transplantation - the premise that organs are a gift of life - by tempting patients who are desperate for organs and those who are desperate for money to turn organs into mere commodities that can be bought and sold. I have been involved with Matching - Donors.com since its beginning. Over the course of time, I have developed a deep compassion and understanding for what people go through who are waiting for organs. I got involved in this Web site because a patient of mine, Paul Dooley, came to me. His father was very ill and was in need of a kidney transplant. He was told by his physician, however, that by the time a kidney became available, his father probably would be dead. Obviously this disturbed not only Paul but also his dad. His dad eventually died. Paul runs a Web site that matches employers to employees. He has been doing this for five or six years, and he said, "You know, I have this Web site. I understand how matching Web sites work. Is there a way that we can match people who are in need of an organ transplant with people interested in being live donors?" I told him that I wasn't sure. I didn't know how many people would be willing to be live organ donors for complete strangers, but I told him I would look into it. I did some research and discovered that the National Kidney Foundation had done a survey of about 1,000 people. 1 They were asked, "Would you be willing to donate a kidney to a complete stranger?" Almost 25 percent of those who responded said yes. So, I called Paul and said, "You know, your idea actually may end up helping a lot of people." That conversation took place in October 2003. We have learned a lot over the course of the last year or so. We have learned a lot about the patients and, although you never really know what they are going through unless you have lived through it, we have learned a lot about how they feel and how difficult it is to be someone waiting for an organ. We have learned a lot about transplant hospitals and how difficult it is for them. We have learned a lot about the United Network for Organ Sharing (UNOS) and their waiting list. We have learned that there are now almost 89,000 people waiting for an organ. In 1993, just 31,000 people were on those waiting lists. So, over the course of 12 years, we have almost tripled the number of people waiting for an organ. I am proud of what we do at the Web site. I am proud of the people who work for it. To date, we have had seven people who have been successfully matched with immunologically compatible kidney donors through our Web site and who have had successful surgeries. As of yesterday, we have 22 people who have been matched on our Web site and who have gone through their preoperative evaluations and are waiting for their surgical dates. This Web site raises many ethical questions, and I will try to give my best answers for them. First, is it ethically acceptable not to allow a person in need of an organ transplant to actively search on his or her own for one? Is it ethically acceptable to allow patients to receive an organ from family members or friends, but not to allow patients who may not have a brother or sister or close relative to receive an organ from another? Is it ethically acceptable to allow someone to announce at their place of worship or a community center that they are in need of an organ transplant but not allow them to use the Web, as a larger community, to search for that organ? And is it ethically acceptable to allow 17 people a day to die while waiting for an organ transplant, while there are potentially thousands of people out there willing to help them? My answer to all these questions is no. I can't imagine a more difficult situation than being on the transplant list waiting for an organ transplant, or having a loved one suffering on dialysis or in liver or heart failure waiting for an organ transplant. As a surgeon, my career has been devoted to improving the health of patients with organ failure. Nothing hurts more than seeing patients chronically ill or dying on the waiting list. What is the history behind our current system of allocation? When I was a surgical resident at the University of Minnesota, before UNOS was established, individuals were soliciting organs publicly. Charlie Fisk went on national TV to find a donor for his daughter, Jamie, who needed a liver transplant and was hospitalized at the university. Who could blame him for doing so? Did it work? Yes, absolutely it worked for his daughter. But what about all the other patients like Jamie, whose fathers did not have the energy or resources that Charlie Fisk had. Clearly it was not fair to them. This is what led to the formation of UNOS. As a community we all have to face up to the fact that we have to make choices about allocation. They are tough choices, but they must be made in a way that is fair to all. The problem is that we don't have enough organs. The problem is not how they are allocated. For these reasons, I believe that solicitation by individuals or families for deceased donor organs and directed donation to specific individuals will undermine the trust and fairness on which UNOS currently exists. I believe that solicitation of organs from living donors is just as wrong. What about the arguments in favor of bypassing the UNOS system? One argument is that the living donor or deceased donor family should be able to give their gift to anyone of their choosing, just as we might donate food, clothing or money to a charity of our choice. This view is flawed, however, in that organ donation is not a purely personal transaction but occurs within the context of a transplant team and a public institutional structure. Directed donation ties donation to the emotional appeal, public relations skills, photogenicity and financial resources of the patient, family and others involved in the campaign. It assumes that the person soliciting for the organ is ethically special because of some characteristic that allows an exemption from criteria that apply to everyone else. The principle of autonomy does not mean that we have an unqualified right to self-determination. Rather the donor's action is subject to the competing and legitimate rights of others, specifically all of the patients on the waiting list. If the individual choice infringes on equality and justice, it is not a legitimate exercise of autonomy and must be rejected. If altruistic donors understand the fair policies of organ allocation, they will be willing to donate their organs to the neediest recipient, as a non-directed donation. In the case of deceased donors, this will be according to the established allocation policies. In the case of living donors, I would argue that this would be according to the transplant center's waiting list, to which the donor has volunteered. Let me review more briefly some of the other problems of directed donation, most applicable to either deceased or living donors. In the 1980s several prisoners volunteered to be organ donors. When they were released from prison, they sought out the recipients and tried to extort money from them. The experiment was ended. There have been documented instances where potential recipient family members have solicited donor families in waiting rooms and intensive care units. In other cases, families have monitored police and ambulance communications to identify hospitals where potential donors were being taken. The family members of potential recipients then approached the family of the victim, seeking directed donation to their loved one. In conclusion, directed donation, except in the context of relatives or friends, unfairly directs organs away from the neediest patients on the waiting list and bypasses approved allocation policies. New England transplant programs and other programs across the country have been performing non-directed transplants from volunteer donors for many, many years. These programs need to be expanded by educating the public more about the options for voluntary living donation. If altruistic donors understand the fair policies of organ allocation, I believe they will be willing to donate the organs to the neediest recipient as a non-directed donation. It is already being done effectively in New England and elsewhere and needs to be expanded. Transplantation was what got me interested in bioethics, and I have been working in this field since it began. I believe that transplantation is a worthwhile and good thing. All that said, I have had, and continue to have, a lot of doubts and reservations about living donation and so, part of my problem with Web brokering or solicitation of strangers to act as living donors is not just linked up to the Web. After all, the Web is just a tool. It is just one way for people to find one another. But I have some reservations on ethical grounds more generally about the practice of living donation. Let me present to you something I have labeled Caplan's paradox. Caplan's paradox relates to a spectrum. At one end is the voluntary, altruistic, well-informed person who freely decides to choose to donate an organ to a family member. I doubt we are going to hear anybody on the panel, except maybe me, say that they are very worried about a brother who gives a kidney to his brother, who understands what is going on, who knows the risks that are involved, who is not being paid any money under the table, who has a reasonably good idea that the brother will benefit and goes into it eyes open. But at that end of the spectrum, we must recognize that it is obviously difficult emotionally to disassociate yourself from the fact that it is your brother. An old friend of mine once told me, "I don't know why you bioethicists spend so much time on the informed consent issues with living donors." When I asked her what she meant, she said, "Because when we ask people whether they are going to give bone marrow or a kidney to someone, they make up their mind in a second. 'That is my brother. Of course I will give him my kidney or bone marrow.' Or, 'That is my brother. I would never give that jerk my kidney or bone marrow.'" So, you can see the emotional pull that we associate with family roles correlates very strongly with their emotional ties. These ties might even extend to my buddies in the firehouse. They might extend to my fellow members at my church. The closer you are emotionally related, the harder it is to say that your choice is based on careful deliberation and reasoning. Some of what you do is simply because you think your role as parent, brother, friend or close associate makes the choice for you. In other words, it may be acceptable to act out of a love for one's family member to give up a kidney, but it isn't a voluntary choice in the purest sense of that term. At the other end of the spectrum, we have people who fly into town and say, "I read in the paper that someone needs an organ, and I am going to give them an organ" or someone who says, "Jesus spoke to me last night, and I am here to give up a piece of my liver today." We recognize that it is possible for someone to be motivated by regard for one's fellow man or religious motives. Even so, it is impossible not to wonder what sort of person comes in from out of the blue to give somebody an organ. Can we trust someone who says he is responding to voices he has heard in his head? Competency becomes suspect at this end of the spectrum. In other words, when dealing with close family members or friends, there is voluntary and free choice, but it is clouded by emotion. At the other end of the spectrum, when the participants are strangers, we start to worry about the competency of potential donors who appear out of nowhere and say they want to help. We do not have, by any measure or means that I know, a reliable way of discerning between Good Samaritans and true altruists versus those who have psychological problems or who are acting on impulse. If you accept this paradox, then you have to be very worried about how to assess competence or motive. Are the donors acting on impulse, because of money, because of psychiatric issues or something else? The problem in the field of living donation is that there is hardly any regulation in terms of how to screen and assess donors. Different programs do different things. Some don't do much at all. I know one or two programs who do no psychiatric, psychological or social work assessment whatsoever. This raises questions about the business side of transplantation. Programs are very eager to get people into their programs, not just to save lives, but because there is a lot of money to be made. But what about looking after the interests of the donor? This is a fundamental weakness in living donation. There isn't much in the way of donor advocacy, and there are not agreed upon standards for how to assess donors and make decisions about who should be eligible to be a living donor. Without those standards, the whole process of living donation is fraught with danger. I want to look at three ethical issues that are raised by directed donation over the Internet. First, is an organ a private or public resource? Second, is directed contingent donation (that is, naming the recipient of your organ) ethically objectionable in itself, and third, is it unfair to either donate or to get an organ outside of the UNOS system? Let me start with the first question, "Is my kidney or your kidney a private or a public resource?" The philosopher Judy Thompson once said that, "If I own anything, I own my body." This being the case, a surgeon cannot take my kidney without my permission, even though I can get by without it, and someone else with renal failure would be much better off with it. In addition to thinking it would be wrong to take an individual's organs without their consent, we also think it is morally permissible for individuals not to donate, even to others who are in great need. We don't criticize people for not donating, at least absent some special obligation to the potential recipient. All this suggests to me that a kidney is a private resource. Now, if one of you donates your kidney to UNOS to be allocated by a fair system such as the one used for deceased donor organs, then I think it becomes a public resource. I don't think this is true, as Dr. Hanto argued, because it takes a social network to get a kidney from one individual into another. If I want to help people who are starving in Bangladesh, I can't do that by myself either. The fact that it requires that social network doesn't transform my resources into public resources. I think the same thing is roughly true in the transplant context. If the organ is donated to UNOS, it then does become a public resource, to be used according to the rules of that system. If the organ is instead donated to a specific individual, then I think the organ becomes the property of the intended recipient. Second, what about directed donation? Is it wrong to name whom the recipient will be? Well, as several have pointed out, we already do accept this and it is a common practice. It is done in families. Why do we think it is okay there? One reason is that we believe that individuals have specific obligations to other family members that they don't have to others. This could show why someone might be required to donate to a family member, but I do not think it can show that it would be wrong to donate to a stranger. So, the fact that we have a reason for accepting directed donations to specific family members does not give us a reason for rejecting donation in the case of strangers. If we assume that the organ would not be donated unless it went to a specified individual, then notice what happens. Someone is better off, namely the recipient of the organ, and no one is worse off as a result of this, because the organ would not have gone to anyone else. This is what typically happens in family donation. Someone is willing to donate to their brother but not to just anyone. But this could also be true with regard to direct donation to a stranger, that is, that I would donate to this specific person because I was moved in one way or another by this individual's plight, but I wouldn't just donate to anyone. So, why might it be wrong to donate to a stranger? Well, one worry here is the possibility of payments under the table. For that, we need to put practices in place that give us reasonable assurance that this is not taking place, because we don't want these resources to be auctioned off to the highest bidder. In addition, we worry about other objectionable motives. There was a case in Florida, for example, where the family of a brain-dead man found Ku Klux Klan membership cards in his wallet and insisted that his organs go only to white recipients. 2 The transplant team was reluctant to participate in this expression of racism and should have been entitled to refuse, but in that case the team did ultimately take the organs, and, as a result, Florida passed laws against that kind of donation. Despite these legitimate concerns about racism, however, it is worth adding that even if an offer to provide something to someone else is done from a bad motive, it doesn't simply follow from this that the offer should not be accepted, especially if some great good will come of it, such as saving a life or improving the quality of someone's life substantially. Is it wrong if I am giving to someone who is not the person in greatest need? This is often the case in directed donation. Well, we certainly accept this possibility in a wide variety of other circumstances. Consider, for example, donations to the United Way. For those donations, you have the capacity to say, for example, that you want your entire donation to go to one organization or you want it to go to three organizations. I doubt that, when people pick those organizations, they have even thought about whether they have picked the organizations that meet the greatest needs. So, when we are engaging in charity we have some discretion over where we want our resources to go. The third issue is fairness. Is it unfair to others, in need of a transplant, to direct a donation to a particular patient, who presumably isn't at the top of the waiting list? Notice that unfairness arises even in directed donation among family members, because some people don't have families and so don't have this option. In considering the fairness issue, it is important whether we think that directed donation increases the supply of organs or merely reallocates a fixed supply of organs. So let's consider each case separately. Take first the case where the donor would only donate to an identified recipient and, if this is not permitted, won't donate at all. First, notice that no one is made worse off by this practice, as I have already pointed out. Those above that individual on the waiting list are just as well off as they were before. Those below that person on the waiting list are actually better off than they were before because there is one less person in front of them. So no one is harmed. Now, I do think there can be harmless wrongs, so I don't think this argument is decisive, but it is worth noting that in this case no one is made worse off by allowing directed donation to happen. Now, suppose instead that the donor might have donated to UNOS, if he or she couldn't direct the donation to a particular individual. Then those above that individual on the waiting list are in fact worse off because an organ that would have gone to one of them now doesn't go to one of them. In this case, I think there is at least an argument that the practice may be unfair. This argument would be stronger if there were not some features of the UNOS system that I think are themselves unfair. For example, individuals can get on multiple waiting lists around the country, increasing their increases chances of getting an organ. Since this privileges those with the resources and the savvy to game the system, there are aspects of the existing system in need of some correction before these concerns about fairness can be adequately addressed. My conclusion is not to endorse donation over the Internet without any regulation. I think that would be a mistake. But I do think that several of the central arguments that are made against directed donation and solicitation of organs are weaker than they are sometimes supposed to be. Footnotes1 Spital A. Public attitudes toward kidney donation by friends and altruistic strangers in the United States. Transplantation 2001; 71(8):1061-1064. 2 Veatch RM. Transplantation Ethics. Washington, D.C.: Georgetown University Press; 2000.
The opinions expressed in the journal, Lahey Clinic Medical Ethics, |
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