This topic was discussed at the Council's
January 2003 meeting. This background paper was prepared by staff solely to
aid discussion, and does not represent the official views of the Council
or of the United States Government.
Staff Background Paper 1
Organ Transplantation: Ethical Dilemmas and Policy Choices
Since the first human kidney was transplanted in 1954, the nation has engaged in searching public discussions about the ethics of organ transplantation: about the human significance of removing organs from both living and cadaveric donors; about the criteria for determining when death occurs and thus when the decedent's organs might be taken; about whose wishes should ultimately decide whether organs are used or not used; and about the ethics of different organ procurement and allocation laws.
The current organ policy is shaped largely by two important laws: The first is the Uniform Anatomical Gift Act of 1968, adopted in all fifty states, which granted individuals the right to decide before death whether they wished to donate their organs; the second is the Organ Transplantation Act of 1984, which aimed to encourage organ donation by establishing an organized organ matching and procurement network, while outlawing the buying and selling of human organs or the direct compensation of organ donors and their families. Taken together, these laws sought to reap the medical benefits of organ transplantation and to encourage individuals to become organ donors, while preserving certain ethical limits against treating the body as property and the newly dead as simply natural resources. It also sought to ensure, as much as possible given other inequities in the health-care system, that organs are allocated in an equitable way.
Whether this policy has been a great success or terrible failure both medically and ethically is a complex question. Many lives have been saved that would not have been otherwise, and yet waiting lists for organs continue to increase. Many individuals have given of themselves (literally) to save the life of another, and yet the unequivocal protection of those who are not-yet-dead (but would be useful if they were) has been called into question. The human body (dead or alive) has not been reduced to mere property, and yet the desperation of watching thousands of individuals die every year while waiting for organs has prompted a renewed debate about whether monetary incentives should be used in an effort to increase organ supply.
In the 107th Congress (2001 2002), a number of bills aimed at promoting organ donation and increasing organ supply were proposed. Some bills would have provided formal recognition of donors with commemorative medals. Other bills offered tax credits to individuals who donate organs (or credits to their surviving families) or reimbursement of the costs incurred by living donors.2 In addition, numerous books and articles have been written claiming that the current organ procurement system has been a failure, resulting in "prolonged suffering, declining health, and rising death rates,"3 and that the time has come to explore a market-based system to solve the organ supply problem. A new group called LifeSharers is attempting to develop a private network of organ giving and receiving, so that members have first priority on the organs of other members. And while the medical community generally supports the guiding principle of the current policy that organ donation should be an act of giving, without monetary incentives of any kind the American Society of Transplant Surgeons has endorsed the idea of a pilot program that would partially reimburse surviving families for the funeral expenses of individuals who allow their organs to be taken after death.
I. The Human Context for Considering Organ Transplantation
Before considering the moral arguments for and against different organ procurement policies, one must first consider the human context and human meaning of organ transplantation itself. This context is first of all the dignity and integrity of the human body. A frequent line of argument in the organ transplantation debate is that organs are "no use" to individuals after they have died. No doubt this is in a certain sense true. And yet, it suggests that an individual's body has meaning only because it is "useful"; that the body is a tool individuals have rather than what individuals are. We are tempted, as Gilbert Meilaender has written, "to suppose that the 'real' person transcends the body." But in fact, our humanity and identity are inseparable from our bodies including the human dilemmas that arise when our bodies fail us, the humor we experience when bodies sometimes have a mind of their own, the grace or excellence that we embody when we (our bodies) perform in ways only we (they) can, and the dignity of fundamental human-bodily activities such as the loving embrace and procreation.
Of course, modern medicine and medical progress depend on gaining some mastery of the body, including the routine study of the dead so that we might gain knowledge to help the living, and experimentation on living individual's bodies in the hope of curing dreaded diseases. Medicine often involves "violating" the body in order to "save" it for example, amputating a limb or opening the chest to operate on the heart. In the case of organ transplantation, this "violation" is done to one person, living or dead, in order to save another with possibilities both for great charity and great coercion that this intervention entails.
This brings us to the second context for understanding organ transplantation: the obligations and limits of medicine. No one can deny the great good that has come from organ transplantation in both lives saved and suffering ameliorated, as well as the great suffering that cannot be ameliorated because of the organ shortage. And yet, if saving the most possible lives while inflicting the least harm on the living were the only significant human obligation, then our policy on organ transplantation (not to mention human experimentation) would be very different. Society could simply take all available organs, and treat dead bodies as a public resource. But we do not do this, and for good reason. The obligation to heal as fundamental as it is to the good life and good society exists in concert (and sometimes in conflict) with other human values: the principle of autonomy, the duty of families to mourn the deceased, the responsibility of doctors to do no harm even when very great good might come from it.
Beyond this, there are many further questions to consider: Whose wishes should finally prevail in determining whether organs are taken the dead person himself while he or she was living or the family that must mourn the deceased after death? Does autonomy mean having the right to dispose of one's body (or enter into contracts for one's body) in any way an individual sees fit? Do fears about turning the body into property justify policies such as no payment for organs that potentially limit the supply of a life-saving "resource" and limit the right of individuals to make decisions about their bodies before and after death? Are there legitimate moral reasons not to be an organ donor or not to allow the organs of a deceased loved one to be taken? Do siblings or parents, while alive, have a moral obligation to donate organs to siblings or children who would otherwise die? Has the possibility of organ transplantation created new kinds of pressures or new forms of suffering such as waiting in misery on organ waiting lists, and perhaps facing a death that comes to seem "unnecessary"?
II. Organ Transplantation and Public Policy
With these difficult questions in mind, we now turn to consider a number of different systems for governing the procurement of cadaveric organs. We begin with three caveats: First, it is impossible to separate the ethical-political debate over cadaveric organs from the debate over living organ donation: both many of the principles involved (such as the meaning of treating the body as property) and the practical dilemmas (such as the problem of rationing an insufficient supply of organs or deciding whether or not to donate) overlap. Second, it is not easy in practice though possible in principle to separate the debate over organ procurement (how we get organs) from the debate over organ allocation (how we distribute them): for one thing, people's moral assessment of how organs are allocated might affect their judgment about whether to become organ donors, and proposals to compensate individuals for providing organs potentially entail their right to sell their organs to the highest bidder. Third, many proposed policies especially organ compensation and organ markets are untested hypotheses; this means that their claims can neither be written off in advance nor accepted at face value. One of the most important questions in this debate is why some people or some families decide not to donate their organs, and thus whether or not payment would change this behavior.
William F. May has described the different principles that might govern an organ procurement system as "giving-and-receiving" (the current system of altruistic organ donation), "taking-and-getting" (a system of routine retrieval of all organs without the explicit consent of the deceased or the surviving family), and "selling-and-buying" (a system of organ markets). One might add two others to this list: "honoring-and-shaming" (a system of public medals and community pressure) and "compensating-and-providing" (a system of public payment or tax credits for organ "donors"). We must, as we judge these different policies, think about the meaning of organ transplantation in its fullness: that is, about organ donation as a "gift of life," organ retrieval as a violation of the human body, organ transplantation as a "noble form of cannibalism," and the organ shortage as a tragedy for those individuals and families that wait for organs and often die waiting. To think about public policy in this area means balancing these different realities and facing soberly the moral costs and benefits of different policies.
We begin by considering three policies what we might call ideal types in reverse that nearly all American would rightfully find unacceptable for different reasons; understanding why these policies are unacceptable can perhaps guide us as we seek to discern the most responsible and prudent policy. The first is a policy of organ conscription or mandatory organ retrieval. Under such a policy, all cadaver organs would be retrieved regardless of the wishes of the deceased individual or the surviving family; dead bodies would be treated simply as a public resource in the service of the common goal of saving human life. The second is a policy of unrestricted autonomy, which would allow individuals, dead or alive, to enter into any contracts they wish for the buying-and-selling of their organs. The guiding principle of such a policy is that individuals "own" their bodies as a "possession," and that only individuals can weigh the risks versus benefits, the pains versus pleasures, entailed in deciding whether to keep, sell, or be buried with one's organs. Such a policy would include, on its own principles, the right to sell vital organs while alive (so-called "lethal transplants"), since an individual might rationally decide that the satisfaction of providing money for his family outweighs his desire to continue living. (And his family might agree!) The third policy is state-mandated protection of the inviolability of all bodies, dead or alive. Such a policy would outlaw all organ retrieval, on the principle that the body ought not to be turned into a thing, even for a noble purpose such as saving life, and that the activity of mourning must not be interfered with by removing the deceased individual's organs.
Each of these policies, by trying to preserve or pursue an absolute but isolated human good-saving the most life, granting the largest possible measure of individual autonomy, protecting the integrity of bodily life-ends up compromising or sacrificing other vital human goods. By seeing the error of these policies, we are perhaps awakened to the challenge of making a policy (or preserving the existing policy) that is both more moderate and more sober.
III. Five Organ Procurement Policies and Proposals: A Comparison
This section considers the moral and prudential arguments for and against five different organ procurement policies.
1.Organ Donation ("Giving and Receiving"):
Under the current system, individuals can decide before death whether they wish to donate their organs after they die. As a legal matter, this positive decision to be an organ donor gives the surviving family no say; in practice, however, the surviving kin are typically asked permission, and in cases when families of organ donors do not wish for the decedent's organs to be taken, those family wishes are typically respected. In cases where individuals have made no declaration positively or negatively about whether they wished their organs to be removed, the decision is left to the surviving family entirely.
The guiding principles of this system, as described above, are the following: to encourage organ donation; to respect, as much as possible, both the prior wishes of the individual who has died and the wishes of the surviving family; to prevent the commodification of the body or perverse incentives for self-mutilation; to ensure that the system of organ allocation is as equitable as possible; and to enshrine in society the principle of "gifting." 4
The greatest shortcoming of this system is that it does not result, at least at present, in a sufficient number of cadaveric organs for all who would benefit from them. Whether any system (or any ethically defensible system) could entirely solve the organ "shortage" is an open question. But there are reasons to believe that new monetary incentives or more aggressive organ retrieval would increase the organ supply.
2. Public Recognition and Community Pressure ("Honoring and Shaming"):
One proposal for increasing the organ supply is to publicly honor with medals or ceremonies, not compensation those individuals (or their surviving families) who donate their organs. This proposal rests on the belief that donation to save life is a (prima facie) civic duty, not just a philanthropic option. Often combined with this proposed policy of honoring organ donors is a proposal for civic "shaming" of those who are not organ donors with slogans like "Friends don't let their friends waste the gift of life" or the creation of public registries so that community members can exhort their fellow non-donating citizens.5
The likelihood that such a program would increase organ supply is of course uncertain. The only objection one can imagine to public recognition of organ donors is that recognition might become (at least partly) the reason for donating, and thus the donation might become less an "other-regarding" gift and more a "self-regarding" act. The idea of civic "shaming" of non-organ donors raises more questions: for example, whether individuals or families might have morally legitimate or morally admirable reasons (such as religious belief) for not donating their organs. It forces us to reflect on the difference between "asking" for organs and "expecting" them, and the difference between "charity" and "obligation."
3.Public Compensation ("Paying and Providing"):
In recent years, there have been a number of different proposals for compensating individuals or their surviving families for allowing their organs to be used (notice: it becomes less accurate, perhaps inaccurate, to call it "donation" once payment is involved). The primary goal of these proposals is to increase organ supply by motivating more individuals and families (with cash payment or other "valuable consideration") to allow their organs to be retrieved. In addition, such a policy could offer public recognition and honor to those who benefit society by allowing their organs to be retrieved. These proposals take different forms: some offer full or partial reimbursement of funeral expenses; some offer tax credits or rebates; some offer direct cash payment. Defenders of such compensation proposals often seek to distinguish them from organ markets: the compensation would be public, not private, and thus would represent the appreciation of the entire community rather than a private contract between parties; a compensation system would set firm limits on what could be compensated for example, allowing reimbursement for funerals of the deceased but not payment for living donors who wish to sell one of their organs; and a compensation system for procurement would be kept separate from the system of organ allocation so as not to endanger the equity of organ allocation, whereas the right to sell one's organs in the open market might also mean giving special advantages to wealthy prospective recipients.
It is impossible to know in advance what effect such a policy would have on increasing organ supply; this depends both on the reasons why many individuals and families do not currently allow their organs to be retrieved and on the size of the compensation, if in fact individuals or families have a price above which the "costs" of giving up their organs are outweighed by the monetary benefits. The greatest objection to such a policy is that it opens the door to a greatly increased commodification of the body; that it puts different prices on different body parts; that it risks creating new tensions and new divisions between surviving family members at the bedside about whether or not to take the money; and that it changes the character of organ procurement from "giving" to "selling," and thus undermines the civic purpose of teaching "charity."
4.Organ Markets ("Selling and Buying"):
There have been a number of proposals in recent years for organ markets, which would allow individuals before death or surviving family members after death to sell their own or their loved one's organs in private contracts. The primary goal of this system is to increase organ supply while respecting and expanding autonomy over one's body or the bodies of one's loved ones. Such market proposals take many different forms. These include "Futures Markets," where individuals agree before death to sell their organs and receive cash payment or lowered health-insurance rates while still living; and "Spot Markets," where families decide after death to sell their loved one's organs for cash payment or some other valuable consideration. Some proposals would have a market system for procurement only thus allowing private selling but restricting private buying; other proposals would have both private buying and selling. Advocates for such policies argue that organ markets would be more efficient than public compensation, by allowing the price for different body parts to shift with shifting supply and demand. They also argue that it is unfair for everyone in the transplantation business to be making money except for the person who provides the precious organs.
As with public compensation, it is impossible to know in advance what effect any of these organ market policies, if enacted, would have on increasing the organ supply. Many of the same objections that are made to a public compensation system (see above) are made against organ markets with the added argument that markets entail the full-scale (not partial) transformation of the body into property; and that organ markets promise to make organ allocation more unequal, since the benefits of a market system ultimately will require the freedom to buy at any price as well as freedom to sell at any price. Moreover, a market system risks creating conflicts between insurance companies, who "own" the rights to the organs of the deceased individuals who sold them, and the surviving family.
5.Routine Retrieval ("Taking and Getting"):
A final policy option is so-called "routine retrieval" or "presumed consent," in which it becomes standard policy to retrieve all usable organs after death, unless individuals or surviving families expressly request that such organs not be retrieved. The primary aim of such a policy is to increase organ supply, while at the same time eliminating the difficult task of requesting organs from family members moments after a loved one has died and the need for a public campaign encouraging people to become organ donors. There are different versions of this policy-ranging from those that make non-retrieval of organs relatively easy to those that make it relatively difficult. A version of this policy has been attempted in many European countries with mixed results. 6
While such a system seems likely to increase the supply of organs, it does so at a cost: staking a claim to the deceased and his or her body without individual or family consent. At the same time, it would change the character of organ procurement from "giving" to "taking," and thus undermine the civic purpose of teaching charity or the opportunity for individuals to be charitable. It would greatly expand the power of the state, forcing families to claim "possession" of the deceased body only so that they might proceed with rites of "surrender and separation." 7
The debate over organ transplantation touches on many of the deepest issues in bioethics: the obligation of healing the sick and its limits; the blessing and the burden of medical progress; the dignity and integrity of bodily life; the dangers of turning the body, dead or alive, into just another commodity; the importance of individual consent and the limits of human autonomy; and the difficult ethical and prudential judgments required when making public policy in areas that are both morally complex and deeply important. It is no exaggeration to say that our attitudes about organ transplantation say much about the kind of society that we are, both for better and for worse.
In the end, we are forced to accept the "tragic" nature of each of the above policy proposals to accept that some goods are inevitably given up in order to preserve other goods that are deemed to be more important. And yet, by setting moral limits and outlawing "cash for flesh," we may be decreasing organ supply and thus accepting the suffering and death of those we might have saved, at least temporarily. By setting aside those moral limits by treating the body as property in the hope of increasing organ supply, we risk devaluing the very human life (and human bodies) that we seek to save. It is of course possible that current opposition to organ markets or public compensation will someday seem as quaint and misguided as opposition to organ transplantation itself. No doubt the taboos of the past such as respect for dead bodies have stood in the way of much that is good about modern life and modern medicine. But it is also possible that the sweeping aside of some old taboos has lessened us, dehumanized us, and corrupted us. It is this risk of corruption and dehumanization that we must not fail to recognize, even as we seek to ameliorate suffering and cure disease by every ethical means possible. The specific question before us is this: What is the most ethically responsible and prudent public policy for procuring cadaver organs? Should the current law be changed, modified, or preserved?
- This paper draw heavily on an essay by staff consultant Eric Cohen, to be published in the Spring 2003 issue of The Public Interest.
- For a helpful account of recent proposals, see "Ethical Incentives-Not Payment-for Organ Donation" in the N. Engl. J. Med, Vol. 346, No. 25, June 20, 2002.
- This quote is taken from The U.S. Organ Procurement System: A Prescription for Reform (AEI Press, 2002) by David L. Kaserman and A. H. Barnett, an important new book making the case for organ markets. And yet, we must wonder whether patients with heart or kidney failure are really worse off today than they were before organ transplantation was possible or widespread? The authors' own tables document the fact that the number of organ transplantations performed each year is increasing, not declining. It is true that our progress has created a new form of suffering: waiting for organs, suffering months or even years on dialysis, waiting in pain for others to die. But it is wrong to declare that the "organ shortage" is the "cause of death" for those who die waiting for organs, and that bigger organ waiting lists mean that the quality of our health-care is deteriorating. Our medical system and medical advances seem to have lowered death rates, not increased them. Social welfare measured simply as the number of patients saved with organ failure is improving, not declining. And the cause of death for those who die waiting for organs is not the shortage itself but the same diseases and frailties of human life that existed before organ transplantation was even possible. This is not to deny the genuine human cost of the organ shortage or the terrible suffering (and courage) of those who wait for organs. It is simply to point out the ways in which a social problem seen as a "crisis" from one perspective looks like "gradual improvement" from another.
- Paul Ramsey, in his classic work Patient as Person (1970), described this "gifting" principle as follows: "A society will be a better human community in which giving and receiving is the rule, not taking for the sake of good to come. The civilizing task of mankind is the fostering, the achievement, or the shoring up of consensual community in general, and not only in regard to the advancement of medical science and the availability of cadaver organs in efforts to save the lives of others.. The positive consent called for by Gift Acts, answering the need for gifts by encouraging real givers, meets the measure of authentic community among men. The routine taking of organs would deprive individuals of the exercise of the virtue of generosity. If, as is said, the young rarely think about their own deaths or about giving their organs upon death, then they should be constrained and enabled to do so by the institutions and practices and laws we enact. To become partners in proved therapies, or joint adventurers in proving therapies, could be among the most civilized and civilizing things young people can do. The moral sequels that might flow from education and action in line with the proposed Gift Acts may be of far more importance than prolonging lives routinely. The moral history of mankind is of more importance than its medical advancement, unless the latter can be joined with the former in a community of affirmative assent."
- See, for example, "Organ Donation: A Communitarian Approach," by Amitai Etzioni.
- See Kaserman and Barnett, op. cit., p. 46-47.
- For an elaboration of this point, see William F. May, "Attitudes Toward the Newly Dead," The Hastings Center Studies, Vol. 1, No. 1, 1973.