The Gift of Life

Ethical Moments in Critical Care Medicine

The Gift of Life Ethical Problems and Policies in Obtaining and Distributing Organs for Transplantation

fames F. Childress, Ph.D.*

Several transplanted organs and tissues can increase a recipient's chances of survival or improve a recipient's quality of life, yet the supply of organs and tissues is inadequate to meet the need and demand for transplantation. Enough cadaveric organs exist, but society has not yet fo und an effective, efficient, and morally acceptable way to obtain them . The Council of Scientific Affairs of the American Medical Association has helpfully described our situation (italics added): Organs removed from a cadaver after breathing and heart action have ceased have sustained serious ischemic injury and, except for cornea, bone, and skin, are rarely suitable for transplantation . Death from brain injury, tumor, or infarction may permit hours or days of normal circulation, especially if conb·olled mechanical ventilation is maintained, which will allow preservation of heart and kidney until they can be removed, cooled, and properly preserved for transplantion. There are

more than enough deaths in the United States (estimate, 20,000) [of approximately two million deaths each year} to provide a surfeit of organs, if there were a satisfactory method of bringing all such cadavers into the pool of donors. 12

Yet in 1981 only 3427 postmortem kidneys were transplanted in the United States . Because each cadaver usually provides two kidneys and because approximately 25 per cent of the organs that become available are not used for various reasons (for example, no matched recipient is available), it is *Commonwealth Professor of Religious Studies; and Professor of Medical Education, University of Virginia, Charlottesville, Virginia The first version of this article was presented as testimony at hearings before the Subcommittee on Investigations and Oversight of the Committee on Science and Technology of the U.S . H ouse of Representatives , April 13, 14, 27, 1983 (Washington , D.C., U.S. Government Printing Office, 1983). The final version was prepared while the author was a GuggerJ1eim Fellow and a Fellow at the Woodrow Wilson International Center for Scholars. He expresses his appreciation to both the Guggenheim Foundation and the Wilson Center, which of course are not responsible for any views presented herein.

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reasonable to suppose that there were approximately 2150 donations of cadaver kidneys, far short of the number needed for the estimated 6000 to 8000 dialysis patients who are waiting for renal transplants. 22 Major shortages of other organs also exist: heart, heart-lung, liver, and pancreas. Currently, in all 50 states, the Uniform Anatomical Gift Act allows us to determine what will be done with our organs after our deaths. If we do not sign a donor card, available in many states with the driver's license, our families may donate our organs after our deaths , unless we have clearly objected to such a donation. Since the late 1960s opinion polls have indicated that large numbers of Americans are willing to donate their organs or their relatives' organs after their deaths. According to a Gallup poll in 1983, of the people who were aware of organ transplants (93 per cent), 83 per cent indicated that they were either very or somewhat likely to donate the kidneys of a loved one, and 40 per cent were either very or somewhat likely to want their own kidneys donated after their own deaths. 22 The last percentage has declined considerably since the late 1960s, when according to some polls, 70 per cent of the adult population said that they were willing to have their organs used for transplantation after their deaths, but in general public support for organ donation remains strong. However, this reported, hypothetical support does not translate into actual donations . Few people (between 1.5 and 19 per cent, according to some studies) actually sign their donor cards. 26 • 49 Fmthermore, families frequently find it very difficult to donate organs after the death of a loved one, and physicians and other health care professionals are often understandably reluctant to raise the question of organ donation in that context. Many potential donors respond entlmsiastically to dramatic cases involving identified lives, as in the case of Jamie Fiske, a child whose need for a liver transplant received national publicity, but changes in public policies may be necessary to increase the supply of organs for unidentified strangers. Some changes in public policies would probably increase the supply of organs and tissues and could also be implemented without violating important ethical principles and values . Several critical questions emerge: Which policies would probably reduce scarcity-a morally desirable goal-without transgressing moral limits, and of those morally acceptable policies, which are morally preferable? In view of cultural, social, and political realities , which could probably be adopted? In assessing various policies, I will emphasize the following moral p1inciples and values. 1. Not harming others (the principle of nonmaleficence). 2. Benefiting others (the principle of beneficence) . 3. Producing the greatest good for the greatest number (the principle of utility or proportionality, often expressed in cost-benefit and risk-benefit analysis). 4. Distributing benefits and burdens in a fair or equitable way (the principle of justice). 5. Respecting personal wishes , choices, and actions (the principle of autonomy). 3

I cannot argue for these principles here, but they are widely accepted , along with others, as relevant to an assessment of actions, practices, and

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policies in science, medicine, and health care. Proposals to change policies in order to increase the supply of organs usually appeal to principles 1, 2, and 3, particularly utility, and arguments against such changes frequently appeal to principles 4 and 5. Thus , although all of these principles are relevant to the policies under consideration, I will concentrate on utility and autonomy or respect for persons with some attention to justice. I will argue that an effective and efficient system for obtaining cadaveric organs (organs from the "newly dead" or "neomorts") can reduce and perhaps even eliminate scarcity without violating the principles of justice and respect for persons. Within the range of ethically acceptable systems of organ procurement, some may be ethically preferable or ideal without being mandatory. It may be ethically preferable to retain the Uniform Anatomical Gift Act and to attempt to reduce scarcity through educational and organizational efforts; however, such efforts, which would be expensive in any event, may need to be supplemented by changes in the act. For example, it would be ethically acceptable to require each adult to make a decision about the use of his or her organs after death or to presume consent to organ removal after death unless the decedent has previously registered his or her dissent or the family dissents. It would be ethically unacceptable simply to take organs from the decedent without regard to the decedent's prior wishes or the family's wishes. Conscription of organ providers is not morally warranted. After considering ethically acceptable ways to obtain cadaveric organs, I will examine policies and problems regarding living related and unrelated donors and then explore another method of procurement (a market in organs) and another source of organs (animals) before analyzing, in conclusion, some issues in macro- and microallocation.

OBTAINING CADAVERIC ORGANS: EDUCATIONAL AND ORGANIZATIONAL EFFORTS WITHIN THE CURRENT LEGAL STRUCTURE

Education of the Public Policies to educate the public about the need and importance of gifts of life should not be underestimated. Some people fail to sign their donor cards because they haven't really thought about it; others may not want to be cut on after their deaths; and still others may mistrust medical institutions and professionals, fearing that they might be declared dead prematurely so that their organs could be used for others. According to a Gallup poll in 1983, both of the first two reasons were offered by approximately 20 per cent of those who did not want their kidneys donated after their deaths ; no other reason was given by so many respondents , and religious objections were not very important. 22 • 32 The third reason appears to be especially important among blacks. 22 • 36 Even though the media spotlight has probably increased the public's awareness of the need for organs in the last few years, there is still a major role for educational activities to explain the whole process, including the determination of death. Nevertheless, such

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educational activities cannot be expected to reduce scarcity significantly without other changes. Education and Organization of Physicians and Other Health Care Professionals It is not easy for physicians who have "lost" a patient to start thinking about how that dying or dead patient's "parts" might benefit others. Nevertheless, once it is clear that the patient will not survive or is brain dead, neurosurgeons and neurologists, who see most potential donors, should actively seek to benefit other patients by alerting the appropriate team. As some commentators have argued, "the only goal of the neurosurgeon must be the full treatment of a potentially salvageable patient, [but] once brain death has occurred a more general responsibility becomes operant, namely to identify potential donors and avoid wastage of organs. "26 Thus, it is both appropriate and important to educate health care professionals about the need for organs as well as what is involved medically, ethically, and legally in obtaining organs for transplantation. Educational activities must be combined with organizational activities to increase the identification of potential donors and to arrange transplantation. 37 The value of organizational activities is evident in the study of a group of physicians at the Centers for Disease Control in Atlanta. These physicians organized a "recruitment network" to relate the transplant team to certain hospital areas, such as intensive care units, through a transplant nurse-coordinator. During the 2V2-year study, the number of actual donors increased ninefold. 2• 12• 22 In addition, as Donald Denny has proposed, it would be possible to build a financial incentive into the federal Medicare reimbursement system to reward hospitals that provide kidneys for transplantation. 22 Of course, it is important that this incentive not be abused. It would also be possible to require hospitals to establish organ procurement programs. 47

Encouraging or Requiring an Institutional Request Io connection with encouraging or requiring institutional programs, it would also be possible without altering the Uniform Anatomical Gift Act to encourage or require hospitals to make requests of all patients when they enter the hospital or of the next of kin when a patient is dying or has died. 6 · 7 There are good reasons not to ask each patient upon arrival in the hospital, but it may possibly be appropriate to ask the family of a dead or dying patient. Whether such a request should be encouraged through incentives to the hospital or required (for example, as part of accreditation) needs further attention. Because both educational and organizational activities may be expensive, they obviously presuppose some judgments about priorities in the allocation of resources for and within health care, and I will return to allocation later. It would be inadequate to undertake one effort without the other. For example, in the Centers for Disease Control study, family consent was received only about half of the time. 2 Without education of the public, even the encouraged or required request might not be effica-

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cious. Hence, it is necessary to combine education of the public with education and organization of health care teams. Brain Death Legislation Because approximately half of the states do not recognize brain death, matters would be clarified greatly and organ donation potentially increased by brain death legislation in the remaining states. Many even recommend a Uniform Determination of Death Act to eliminate confusion and inconsistencies. 22 Even though brain death legislation historically was connected with the emergence of organ transplantation, there are sufficient reasons in the care of patients to recognize brain death without regard for the procurement of organs. It is advisable to distinguish the concept of brain death from organ transplantation, just as it is advisable to separate the role of determiriing a patient's death from the role of organ procurement. 38 Furthermore, as Alex Capron has suggested, it is important to avoid any sense that there are "two kinds of death," one for organ donors and one for others. 22

OBTAINING CADAVERIC ORGANS: CHANGES IN THE UNIFORM ANATOMICAL GIFT ACT Two possible changes in the Uniform Anatomical Gift Act merit careful consideration: requiring a decision and presuming consent. Either could increase the supply of organs for transplantation without violating principles of justice or respect for persons. However, because the system of voluntary donations is ethically preferable, a policy of presumed consent should not be sought until it is clear that the previously mentioned efforts will not be effective. Requiring a Decision

If few donor cards are signed because of inadvertence or forgetfulness , the law could be changed to require everyone above a certain age to make a decision for or against the use of his or her organs after death. Our society rightly wants to avoid requiring people to donate their organs (conscription of organs), but there is no plausible ethical objection to requiring them to make a decision for or against donation. Obviously, this change in state laws might not lead to a dramatic increase in affirmative decisions about organ donation without educational efforts, and the increased use of organs depends , in part, on increased professional activity and organization. However, in conjunction with efforts to educate the public and to educate and organize physicians and others, legislation to require a decision could be very effective. It does not violate standards of justice and respect for persons; indeed, personal wishes and choices are determinative. Presuming Consent This approach is sometimes called "routine salvaging of organs" or "harvesting organs." Both the Uniform Anatomical Gift Act and a law to require a decision involve "contracting in" or "opting in," and both should

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be ranked above a system of "contracting out" or "opting out." It has been suggested that "most people would prefer a community of givers rather than take rs , " 41 and there are ethical reasons for seeking such a community. 31 • 38 • 42 • 45 • 47 However, a system of presumed consent is not ethically unacceptable and may be implemented if organs remain scarce because of a lack of volunteers. 6 • 7 • 15 · 18 • 22 • 27 • 29• 33• 43 It has already been implemented in some states for corneas. 22 Presumed consent laws exist in a number of countries, including Denmark, France, Israel, Norway, Spain , Sweden, and Switzerland. In approximately half of the countries with presumed consent statutes, physicians also determine whether the family objects to organ removal, and some countries recognize donor cards along with presumed consent. Countries with presumed consent laws "seem to come closer to meeting their needs for transplant kidneys ," but they still have waiting lists for renal transplantation. 49 A policy of presumed consent does not transform the community into takers , at least not takers against the express wishes of persons. It only shifts the presumption about a person's wishes apart from his or her clear expression of those wishes , and physicians and other professionals would probably find it easier to approach families about a dead or dying relative' s organs. In short, it could provide the basis for a ritual in a difficult, often tragic "boundary situation . " 33 Recognition of presumed consent (or, perhaps more accurately, tacit consent) as the basis for organ removal, or at least for a request to the next of kin, does not violate the principles of justice and respect for persons if the decedent had an opportunity to dissent . .A policy of presumed consent would enable the society both to realize utility and to respect persons. Even though it would not emphasize "voluntary gifts" (as in the Uniform Anatomical Gift Act or in a statute requiring a decision), it would not authorize actions against a person's express wishes. Even though the language of "presumed consent" is very common, the policy now under consideration might better be viewed as one of "tacit consent. " Presumed consent sometimes encompasses, but is sometimes distinguished from , tacit consent and implied consent, and it may be useful to explore several varieties of consent. The paradigm case of consent that creates rights in others (for example, to remove organs) is express consent. Although tacit consent is distinguished from express or explicit consent, it is not unexpressed . It is rather expressed silently or passively by omissions or by failures to indicate or signify dissent. As John Simmons notes , under certain conditions, the failure to dissent or to object constitutes tacit consent: the potential consenter must be aware of what is going on and that consent or refusal is appropriate, must have a reasonable period of time for objection, and must understand that expressions of dissent will not be allowed after the period ends; he or she must understand the accepted means for expressing dissent; these means must be reasonable and relatively easy to perform; and finally , the effects of dissent cannot be "extremely detrimental to the potential consenter. " 46 Some of these conditions ensure the consenter's understanding; others ensure the consent' s voluntariness. When these conditions are met, the potential consenter's silence may be construed as tacit or passive consent. Consent is expressed, but tacitly or passively. One major difficulty is determining whether silence indicates a lack of under-

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standing rather than tacit consent. In contrast to tacit consent, implied or implicit consent is not expressed; it is rather inferred from other actions. Although a person may engage in actions that imply consent, he or she may not have understood such an implication. Thus , in contrast to tacit consent, implied consent does not presuppose an intention to consent. If consent is presumed on the basis of a person's failure to dissent, it is tacit consent; if it is presumed on the basis of a person's other actions, it is implied or implicit consent. However, if it is presumed on the basis of a general theory of human values without any reference to this person's actions, it is very different and morally suspect, particularly when the action to which a person's consent is presumed primarily benefits others. Most often , the consent that is presupposed by presumed consent policies of organ procurement is tacit consent. However, because silence may indicate a lack of understanding of the means of consent and dissent or of the proposed course of action, a policy of organ procurement based on tacit consent is not morally acceptable without vigorous efforts to ensure public understanding. Because vigorous educational activities are required even under presumed consent legislation, it may not be more cost effective than increasing educational activities within the context of the Uniform Anatomical Gift Act. Of central importance is the role of the family in any system of organ procurement. As a matter of practice in the United States, organs are rarely, if ever, removed when the next of kin objects to their removal, even if the decedent has previously given express consent by signing a valid donor card. 22 Even in some other countries, such as France, where the policy of presumed consent does not require familial approval, physicians and other professionals seek familial consent. 6 It is unlikely that presumed consent legislation in the United States would in principle or in practice circumvent familial refusal after a person's death . If the consent of the next of kin remains necessary in law or in practice, doubts may be raised about whether a policy of presumed consent would really increase the supply of organs. However, such a policy would presumably make it easier for physicians and others to approach the next of kin, because they could appeal to the decendent' s presumed or tacit consent and ask whether the next of kin objects rather than consents. Another serious practical consideration remains. Even though it might have been possible to institute a policy of presumed consent in the late 1960s, it may now be very difficult to modify the express consent policy in effect in all 50 states and the District of Columbia. Thus, in view of the moral preferability of a system of contracting in, the necessity of vigorous educational efforts to ensure the validity of presumed or tacit consent, and the importance of the acquiescence of the next of kin, as well as the difficulty of modifying the Uniform Anatomical Gift Act, it is probably advisable to try to secure organs within the current legal framework before trying to institute a policy of presumed consent. However, neither a policy of presumed consent nor a policy of requiring a decision is morally unacceptable.

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LIVING DONORS

So far I have concentrated on cadaveric organs, examining current and possible policies to increase their supply and ranking these policies according to several moral principles. For some nonvital or paired organs, such as kidneys, and for some renewable tissue, such as skin and bone marrow, it is possible to use living persons as donors. In 1982, there were 5348 kidney transplants , 3681 from cadavers and 1667 from living related donors. 22 Some recent controversial cases have involved bone marrow transplantation. 48 In one case, the Supreme Court of Iowa refused to order a hospital to disclose the name of a potential bone marrow donor to a 27year-old man who was dying of leukemia and might have been helped by bone marrow transplantation. The leukemia patient had learned from a technician at the hospital that an apparently suitable donor was listed in the computer files. 8 In another case (McFall v. Shimp , Allegheny County Ct. Common Pleas, 10 Pa. D&C.3d 90), a judge refused to order a man to complete the tests he had started and to donate bone marrow to save his cousin's life if he proved to be histocompatible. The principle of autonomy or respect for persons and derivative rules, such as privacy, dictate a policy of not removing tissues or organs from a person's body against that person's will, even to save someone else's life. This principle is recognized in both morality and law. It is sometimes interpreted to permit removal of organs from an incompetent person, such as a minor or a retarded person, who cannot give valid consent, but often the explicit rationale in those cases is that the "donor" will also benefit (for example, by not losing a close sibling). In such cases, proxy consent is required. Living donors now provide a smaller proportion of the kidneys for transplantation than previously. In 1967, 56 per cent of the transplanted kidneys came from cadavers, whereas in 1973, 70.4 per cent came from cadavers, and in 1982, 68. 7 per cent came from cadavers. 22 • 26 The number of cadaver donors has increased, but the number of living donors has remained relatively constant. On the one hand, the use of cadaver kidneys should be applauded insofar as it avoids risks to the health of living donors and reduces risks of manipulation and coercion; for example, a family may put pressure on a reluctant donor to provide a kidney to another family member. '0n the other hand, not using kidneys from living donors may represent unwarranted paternalism, because a living donor's decision may be adequately informed and voluntary. Reluctance to use organs from living donors may stem from beliefs about the risks of kidney donation, from worry about the lack of understanding and voluntariness of potential donors, and from fear of malpractice suits. 20 • 28 Removing a kidney from a living donor is an atypical medical procedure. It is pe1formed to provide medical benefit to another patient, not to the donor. Thus, the risk-benefit calculus mainly includes medical risks for the donor and medical benefits for the recipient (although there may be nonmedical benefits for the donor and medical risks for the recipient). Although kidney donors accept risks from the surgical removal of a kidney as well as from living with only one kidney, their survival rates do not appear to differ from those of nondonors. 4 Furthermore, a competent

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and informed donor may voluntarily accept such risks without paternalistic intervention. Of course, many potential living donors may be incompetent to consent to such a procedure or may be under severe pressure and even coercion, especially within a family context. Such persons generally should not be accepted as donors . If the risks are minimal to a particular donor, who is competent, informed, and willing to donate, a signed consent form should be sufficient to protect the physician from a malpractice suit. Although these points hold, in general, for both living related donors and living unrelated donors , it is useful to distinguish the two groups.

Living Related Donors In general, "donor grafts from siblings and parents show superior functional success over cadaver grafts. " 4 However, these sources do not meet the need for kidneys in the population: "Eighty per cent of potential recipients have relatives who are unsuitable donors because of antigenic incompatibility, kidney disease, and renal anatomical problems. " 26 Thus, living related donors are an important but insufficient source of kidneys for transplantation. The major ethical concerns about living related donors who are competent to consent focus on their understanding of the risks and their willingness to undergo the surgical procedure and to accept the risks. Some studies show that family members frequently decide to donate a kidney when they hear that a relative needs one, even before they have been informed about the risks. Furthermore, such donors frequently use the language of "necessity" to describe their choice: "I could not have lived with myself if I had failed to donate," or "I had no choice." 16 • 19 Neither deciding before being informed about the risks nor using the language of necessity always invalidates the donor's consent. Donors may have decided that their reasons for donating (for example, to save a relative' s life) outweigh any risks , and their language of necessity may simply indicate the importance of their reasons for donation . Of course, judgments about the adequacy of a donor's understanding and voluntariness can only be made in the situation, and professionals need to be sensitive to inadequacies on any of these levels, perhaps especially to subtle signs of coercion from other members of the family . Physicians sometimes justifiably provide a "medical excuse" for potential donors under severe external pressure to donate. 4 Two classes of living related donors are particularly controversial because their autonomy is severely limited and even nonexistent in some cases: children (especially preadolescent children) and mentally retarded persons. Because of the limitations on their capacity to give valid consent, it may be unjust to impose the burdens and risks of kidney removal on them in order to benefit some other member of the family. 38 The counterargument is that even though children and mentally retarded persons lack the capacity to give valid consent to organ removal, they can sometimes assent to (or dissent from) such a procedure; more importantly, they frequently derive significant nonmedical benefits from "organ donation. "5· 2 1• 23 For example, these benefits may result from the survival of a family member who contributes greatly to the "donor's" well-being and happiness. There are reasons to be suspicious about claims for such benefits

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in many cases, but it is not clear to me that all uses of children or mentally retarded persons as "organ donors" for other members of a family should be categorically prohibited. At the very least, there should be an independent, judicial review of any proposal to remove an organ from an incompetent, dependent, and vulnerable person. 40 This review should detennine whether the heavy presumption against using such a person as a "donor" can be rebutted because of significant nonmedical benefits to him or her in the absence of alternative means to save the recipient's life. Living Unrelated Donors There has been a clear trend away from the use of living unrelated donors. In the 14 years prior to 1967, living unrelated donors provided 14.5 per cent of the transplanted kidneys. 25 Since 1970, few kidneys have been obtained from living unrelated donors for transplantation. In addition to fear of medical malpractice suits, there is apparently a suspicion that people who want to donate a kidney to an unrelated person, perhaps even a stranger, are mentally unbalanced. Nevertheless, according to one poll, only 46 per cent of those surveyed thought that there was less than an even chance they would donate one of their kidneys to a stranger in need; only 24 per cent definitely ruled it out.20 Polls are notoriously unreliable, and there is often a conflict between what people say they would do and what they actually do. However, people frequently do respond to the visible needs of identified persons when they fail to respond to the needs of statistical persons, and the available evidence suggests that living unrelated donors need not be categorically excluded. Decisions about their acceptability should be made on a case-by-case basis. Certainly, the use of prisoners as organ donors in exchange for such special considerations as early parole, as happened at a Colorado state penitentiary, constitutes exploitation. 47

OTHER METHODS OF PROCUREMENT AND OTHER SOURCES OF ORGANS I will briefly examine one other method of procurement (a market in organs) and one other source of organs (animals) before considering some issues in the allocation of resources, including both money and organs. It would be possible to obtain organs for transplantation by purchasing them for delivery from a living vendor (for example, a nonvital organ such as a kidney in a person who has two healthy kidneys or renewable tissue such as bone marrow) or from cadavers. Contrary to a common supposition, the Uniform Anatomical Gift Act does not prohibit a market in organs. Nevertheless, because of recent progress in organ transplantation and proposals to establish organizations to broker human kidneys by arranging worldwide sales, some states such as Virginia have passed laws to prohibit a market in organs, and the federal government in 1984 prohibited interstate commerce in organs and tissues . Earlier there was a market in blood, and Robert Steinbrook contends that "in the U.S., sentiment against tissue sales is reflected in the fact that an all-volunteer blood supply was established. " 47

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In fact, the shift away from a market in blood-although blood plasma and some products are still sold-resulted not from widespread moral revulsion, but from the cogent arguments offered by Richard Titmuss 50 and others that the commercial system in blood was ineffective, inefficient, and dangerous. Even if the voluntary, noncommercial system is morally preferable, there is still debate about whether the sale of organs and tissues is morally unacceptable, apart from questions about its effectiveness, efficiency, and safety. As George Mavrodes suggests, we can put the sale of organs in two contexts: the sale of various goods and the transfer of organs. 30 In the first context, the question is what is morally problematic about the sale of organs among the various goods traded in the marketplace; in the second context, the question is what is morally problematic about the sale of human organs among the various ways to transfer organs. If the response is that we do not "own" our bodies and thus cannot sell their parts, the respondent then has to indicate how people can "give" or "donate" what they do not own. One legal maneuver has been to use the language of"quasi-property rights" for the disposal of the body and its parts. 44 Among the arguments for permitting, if not encouraging, a market in organs and tissues, two are most prominent: to alleviate the shortage of organs and tissues for transplantation in order to save lives; and to respect the freedom of individuals to do what they want to do with their lives as long as they do not harm others. 34 • 35 The main rejoinder to the first argument is that there are other effective, safer, and ethically preferable ways to increase the supply of organs. The main rejoinder to the second argument is that individuals are not acting freely but are being exploited when they dispose of their body parts in a commercial transaction. Thus, opponents of a market in organs tend to focus on the risks of sales to the recipients, such as poorer quality; the risk of sales to the vendors, as in the removal of a kidney from a living vendor; and the vendor's lack of voluntariness, especially if he or she is poor, economically vulnerable, and subject to exploitation. 1• 14 · 22• 35 They also contend that a commercial system would be costly and would drive out altruism. Nevertheless, even if the negative consequences (for the vendor, the recipient, and the system of giving and receiving) could be avoided and the vendor's voluntariness could be attested, opponents would still insist that a commercial market in organs is abhorrent to our system of values because it is similar to prostitution or even slavery in treating human bodies as property and commodities. They ask what kind of society is reflected, symbolized, or expressed in various policies toward the transfer of bodily organs. Most of the arguments for and against a market in organs have been presented in general terms without an indication as to whether they apply to both living vendors and cadavers, whose use might be controlled by the person while alive or by the next of kin after his or her death. Perhaps the strongest opposition to the market centers on living vendors, but some major fears of abuse center on cadavers (for example, people might be killed to obtain their organs). Nevertheless, serious proposals have emerged-for example, from Congressman Philip Crane--to amend the Internal Revenue Code to provide income and estate tax deductions for

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decedents who donate organs for use in transplantation. One such proposal would allow a deduction for the decedent's last taxable year of $25,000 for each qualified transplant donation. For many, such indirect incentives may be more acceptable than direct payments, but it is important to consider not only their effectiveness, efficiency, and consequences, but also how they really differ, if at all, from direct payments . It may be instructive to consider how the line is drawn between coverage of a donor's medical expenses, compensation of a live donor's lost wages , and payment for the burial expenses of a deceased donor. 22• 47 Another possible source of organs is animals. Despite futuristic visions of animal farms for organs, transplanting animal organs into humans currently should be considered as a last resort, and then only as a stopgap or bridge to gain time while a human cadaveric organ is sought. Controversy erupted in the case of Baby Fae, which involved the first baboon-tobaby heart transplant on October 26, 1984, and Dr. Thomas Starzl, who has been a pioneer in liver transplant surgery, is reportedly considering the use of chimpanzee livers in very small children for whom human cadaver livers are unavailable. At least for the time being, the most rigorous requirements regarding experimental procedures should be followed ; of particular importance are the risk-benefit ratio of the procedure, consideration of alternatives (for example, questions have been raised about whether the transplant team in the Baby Fae case sought a human cadaver heart with sufficient vigor), and informed, voluntary consent of the patient or his or her proxy (for example, provision of free medical care if an animal transplant is accepted but not if another treatment is chosen may put the patient or proxy in a difficult and unfair position). Although the moral objection to the sacrifice of animals must be taken seriously, it appears to be outweighed if there is a significant chance of extending human life or reducing pain and suffering. The taboo on interspecies transplantation is more difficult to take seriously, apart from immunologic considerations, especially when a human life is at stake; after all, animal parts are already being used, such as pig valves in heart surgery. In general, exb·eme caution in the use of animal organs in humans is in order while research proceeds.

ORGAN TRANSPLANTATION IN THE CONTEXT OF MACROALLOCATION AND MICROALLOCATION In organ transplantation as elsewhere, decisions about macroallocation (how much of a good should be made available?) and microallocation (who should receive that good when its supply is limited?) interact. It is obvious that macroallocation decisions determine the availability of a particular good and whether there will be problems of microallocation. 9 • 17• 24 Perhaps less obviously, but also significantly, the society may reconsider its macroallocation decisions because of the experience of severe problems of microallocation. For example, the controversy about rationing scarce life-saving kidney dialysis and transplants, particularly by ability to pay and by judgments of social worth, greatly influenced the federal government's decision to provide almost universal coverage for kidney dialysis and

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transplantation. Then, as now, an important part of the debate about allocation concerned the roles of the government and the marketplace. Elsewhere I have identified several major allocation questions: How much of the society's resources should go for health and health care and how much for other goods? Within the health care budget, how much should go to prevention, to critical care, and to chronic care? Which diseases should have priority (e.g. , renal disease, heart disease, or cancer)? Which technologies should be funded (for example, organ transpla.ntation)?9 Positions taken on the provision of funds for organ transplantation through Medicare or Medicaid presuppose or imply answers to these questions. To take only the last question, there is considerable debate about whether some procedures , such as liver transplantation, are only experimental and thus should not be covered. 22 But even this apparently technical question really involves broader considerations, and when Secretary Harris of the Department of Health and Human Services withdrew an earlier tentative authorization for Medicare to cover heart transplantation , she insisted that it was essential to have a fuller technology assessment, considering the costs as well as the effectiveness of the procedure. 3 Here again , questions of macro- and microallocation interact. One reason for Secretary Harris' decision was her concern that the screening criteria for transplants at some institutions were "social" as well as "medical." For example, Stanford's criteria excluded patients with "a history of alcoholism, job instability, antisocial behavior, or psychiatric illness," while requiring "a stable, rewarding family and/or vocational environment to return to posttransplant. " 3 • 11 It is important to probe criteria for microallocation to ensure that putatively medical criteria do not incorporate unarticulated and unwarranted standards of social worth. As Lois Christopherson has noted, judgments about the criteria of selection may be affected by judgments about the efficacy of a procedure: "Staff members who saw the procedure [cardiac transplantation] as valuable and effective were more likely to believe that recipients were selected from well-educated and financially comfo1table groups. Those who were particularly aware of the procedure's limitations and uncertainties were more likely to suspect that transplantation was performed disproportionately on the poor and unsophisticated. " 11 In addition to criteria for admission into a particular program of transplantation , there is the question of who receives an organ that has been obtained. Selection of patients to receive a human organ may not be as problematic as selection for an artificial organ, such as the kidney machine in the late 1960s and early 1970s, because the match between the transplanted human organ and the recipient is important. Major considerations are need and chance of benefit, but questions of justice also arise. Retrieval programs give priority to local patients, distributing unsuitable organs to other programs according to match, distance, time , and so on. "Right now," Donald Denny insists, "our present system is equitable and it works. " 13 evertheless, special appeals through public officials such as the President and through the media have sometimes resulted not only in funds to pay for transplantation but also in organs for particular individuals. Although these ad hoc arrangements reflect compassion, they may also

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violate standards of justice, because justice requires that similar cases be treated similarly, and high visibility is not a relevant similarity for the provision of public funds for transplantation or for special support in obtaining organs. Robert Veatch has argued that "no one should get an organ for transplant (or an artificial organ for implant) until there is a fair, nondiscriminatory allocation system in place which gives everyone in equal need for life-saving organs an equal opportunity of access. " 22 Even though it does not appear to be necessary to declare a moratorium, as Veatch proposes, we do need to examine the current system of distribution very carefully to make sure it is as just as possible. A final issue in microallocation is patient choice. Although there are appropriate external constraints on patient choice even in just allocation systems, patient choice is important within those limits. For example, if there are alternative treatments for end-stage renal disease, the patient should be informed about the range of treatments and their benefits, costs, and burdens. The patient should also be allowed to choose the treatment-transplantation, center hemodialysis, home hemodialysis, continuous ambulatory peritoneal dialysis-that most closely fits his or her needs and values.

REFERENCES 1. Annas, G. J.: Life, liberty, and the pursuit of organ sales. Hastings Cent. Rep. , 14:22r23, 1984. 2. Bart, K. J., Macon, E. J., Humphries, A. L. , et al.: Increasing the supply of cadaveric kidneys for transplantation. Transplantation, 31:383-387, 1981. 3. Beauchamp, T. L., and Childress, J. F.: Principles of Biomedical Ethics. Edition 2. New York, Oxford University Press, 1983. 4. Bernstein, D. M.: The organ donor. J.A.M.A. , 237:2643-2644, 1977. 5. Bernstein, D. M., and Simmons, R. G.: The adolescent kidney donor: The right to give. Am. J. Psychiatry, 131:1338-1343, 1974. 6. Caplan, A. L.: Organ procurement: It's not in the cards. Hastings Center Report, 14:912, 1984. 7. Caplan, A. L.: Organ transplants: The costs of success. Hastings Center Report, 12:2332, 1983. 8. Caplan, A. L., Lidz, C. W., Meisel, A., et al.: Mrs. X and the bone marrow transplant (case study and commentaries). Hastings Center Report, 13:17-19, 1983. 9. Childress, J. F.: Priorities in Biomedical Ethics. Philadelphia, The Westminster Press, 1981. 10. Childress, J. F.: Who Should Decide? Paternalism in Health Care. New York, Oxford University Press, 1982. 11. Christopherson, L. K.: Heart transplants. Hastings Center Report, 12: 19, 1982. 12. Council on Scientific Affairs: Organ donor recruitment. J.A.M.A., 246:2157-2158, 1981. 13. Denny, D.: How organs are distributed. Hastings Center Report, 13:23-32, 1983. 14. Dickens, B. : Control of living body materials. Toronto Law Rev. , 27:142, 1977. 15. Dukeminier, J. , and Sanders, D.: Organ transplantation: Proposal for routine salvaging of cadaver organs. N. Engl. J. Med. , 279:413-419, 1968. 16. Eisendrath, R. M. , Guttmann, R. D., and Murray, J. E.: Psychologic considerations in the selection of kidney transplant donors. Surg. Gynecol. Obstet. , 129:243-248, 1969. 17. Englehardt, H. T.: Shattuck lecture: Allocating scarce medical resources and the availability of organ transplantation. N. Engl. J. Med. , 311:66-71, 1984. 18. Feinberg, J.: Sentiment and sentimentality in practical ethics. Proc. Addresses Am. Philosoph. Assoc. , 56:19--46, 1982.

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19. Fellner, C. H. , and Marshall, J. R.: Kidney donors: The myth of informed consent. Am. J. Psychiatry, 126:1245--1251, 1970. 20. Fellner, C. H., and Schwartz, S. H.: Altruism in disrepute: Medical versus public attitudes toward the living organ donor. N. Engl. J. Med., 284:582--585, 1971. 21. Fost, .: Children as renal donors. N. Engl. J. Med. , 296:363--367, 1977. 22. Hearings on Organ Transplants before the Subcommittee on Investigations and Oversight of the Committee on Science and Technology, U.S. House of Representatives, April 1983. Washington, D.C. , U.S. Government Printing Office, 1983. 23. Hollenberg, . K.: Altruism and coercion: Should children serve as renal donors? Engl. J. Med. , 296:390-391 , 1977. 24. Iglehart, J. K.: Transplantation: The problem of limited resources . N. Engl. J. Med., 309:123-128, 1983. 25. Katz, J. , and Capron, A. M.: Catastrophic Diseases: Who Decides What? ew York, Russell Sage Foundation, 1975. 26. Kaufman , H. H. , et al.: Kidney donation: Needs and possibilities. Neurosurgery, 5:237243, 1979. 27. Kennedy, I.: The donation and transplantation of kidneys: Should the law be changed? J. Med. Ethics, 5:13-21, 1979. 28. Lawton, R. L.: Living non related donors for transplantation. Proc. Dialysis Transplant Forum, 30--34, 1978. 29. Matas, A. J. , and Veith, F. J. : Presumed consent for organ retrieval. Theor. Med. , 5:155-166, 1984. 30. Mavrodes, G. I.: The morality of selling human organs. In Basson, M. D. (ed. ): Ethics, Humanism, and Medicine. Tew York, Alan R. Liss, 1980. 31. May, W. F.: Attitudes toward the newly dead. Hastings Center Studies, 1:3-13, 1972. 32. McCormick, R. A.: Organ transplantation: Ethical principles. In Reich, W. T. (ed. ): Encyclopedia of Bioethics. New York, Macmillan/Free Press, 1978. 33. Muyskens , J.: An alternative policy for obtaining cadaver organs for transplantation . Philosophy Puhl. Affairs, 8:88-99, 1978. 34. Perry, C .: Human organs and the open market. Ethics, 91 :63--71, 1980. 35. Peters, D. A.: Marketing organs for transplantation. Dialysis Trans pl. , 13:40--42, 1984. 36. Prottas, J. M.: Encouraging altruism: Public attitudes and the marketing of organ donation. Milbank Mem. Fund Q. (Health and Society), 61:278-306, 1983. 37. Prottas, J. M.: Obtaining replacements: The organizational framework of organ procurement. J. Health Polit. Policy Law, 8:235--250, 1983. 38. Ramsey, P.: The Patient as Person. New Haven, Yale University Press, 1970. 39. Roberts , S. D. , Douglas, R. W. , and Gross, T. L.: Cost-effective care of end-stage renal disease: A billion dollar question. Ann. Intern . Med. , 92(1), 243-248, 1980. 40. Robertson , J. A.: Organ donations by incompetents and the substituted judgment doctrine. Columbia Law Rev., 76:48-78, 1976. 41. Sadler, A. :\1., Jr. , and Sadler, B. L. : A community of givers, not takers. Hastings Center Report, 14:6--9, 1984. 42. Sadler, A. M. , Jr. , Sadler, B. L., Stason, E. B. , et al.: Transplantation: A case for consent. N. Engl. J. Med. , 280:862-867, 1969. 43. Sanders, D. , and Dukeminier, J., Jr.: Medical advance and legal lag: Hemodialysis and kidney transplantation. U.C.L.A. Law Rev. , 15:357-413, 1968. 44. Scott, R.: The Body as Property. New York, Viking Press, 1980. 45. Sells, R. A.: Let's not opt out: Kidney donation and transplantation. J. Med. Ethics, 5: 165--169, 1979. 46. Simmons, A. J.: Tacit consent and political obligation. Philosophy Puhl. Affairs , 5:274295, 1976. 47. Steinbrook, R. L.: Kidneys for transplantation. J. Health Polit. Policy Law, 6:504-519, 1981. 48. Steinbrook, R. L.: Unrelated volunteers as bone marrow donors. Hastings Center Report, 10:11-14, 1980. 49. Stuart, F. P. , Veith, F. J. , and Cranford, R. E.: Brain death laws and patterns of consent

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to remove organs for transplantation from cadavers in the United States and 28 other countries. Transplantation , 31 :238-244, 1981. 50. Titmuss, R.: The Gift Relationship. New York, Pantheon, 1971. Department of Religious Studies Cocke Hall University of Virginia Charlottesville, Virginia 22903