Incentives for Deceased Donation
The committee was asked to examine the use of financial and nonfinancial incentives to increase the supply of organs from deceased donors. A financial incentive is the provision of something of material value to motivate consent for organ removal. For example, a direct payment could be made in exchange for the organ, with the price for the organ determined by the free market or set by regulatory authorities. In either case, the exchange of money for organs would constitute a purchase and sale. Alternatively, financial incentives might be used to induce donations, just as the prospect of a tax deduction is used to induce charitable contributions. Such incentives might be a cash payment usable for any purpose; a cash payment earmarked for a specific purpose, such as funeral expenses or a charitable contribution; or a material good or service, such as bereavement counseling or health insurance. The financial incentive could go to the donor before death or to the donor’s estate after death in exchange for the donor’s agreement to allow his or her organs to be recovered after death. In situations in which the donor’s family makes the decision to donate, the incentive could go to the family.
Nonfinancial incentives to donate could take the form of community recognition or preferential access to donated organs. Community recognition might be a public appreciation ceremony or a medal of nominal material value provided to individuals who register as potential organ donors or to the families of deceased donors. Preferential access might be given by establishing a rule that those who have previously registered as organ donors receive organs ahead of those who have not, or it might be given by
adding extra points for being a registered donor to the priority score used to allocate organs to recipients.
After a short review of the history of the current prohibition against the sale of organs, the chapter addresses direct payments for organs within free-market and regulated-market models. The chapter then examines the use of financial incentives to reward and induce donation. Finally, the chapter analyzes nonfinancial incentives, particularly preferred status on organ waiting lists, for people who record their willingness to be organ donors.
HISTORY AND CONTEXT
In the United States, organs from deceased individuals become available for use for transplantation through donation by express consent. In the 1960s, as it became possible to use organs from deceased individuals, it was sometimes unclear whose consent—the decedent’s, while he or she was alive, or the family’s after the person’s death—was necessary and sufficient for donation because of variability in state laws. Resolving this uncertainty, the Uniform Anatomical Gift Act (UAGA) of 1968 authorized express donation by individuals and, in the absence of the decedent’s prior choice, by the family. Although UAGA focuses on gifts or donations, it did not rule out transfer by sale; it simply did not address sales at all.
According to the chair of the UAGA drafting committee, the drafters did not intend to encourage or discourage payment for organs but instead left the matter entirely up to the states (or, preferably, individual conscience). He noted: “It is possible, of course, that abuses may occur if payment could customarily be demanded, but every payment is not necessarily unethical…. Until the matter of payment becomes a problem of some dimensions, the matter should be left to the decency of intelligent human beings” (Stason, 1968, p. 927). Sales had been illegal in some states prior to the UAGA’s adoption in the late 1960s and early 1970s. However, most of those statutes banning sales were repealed when UAGA was adopted, and the legal status of organ sales or purchases for transplantation “remained uncertain” in most states, although it remained legal to buy and sell blood and sperm (Hansmann, 1989, p. 59).
Little public debate about this matter occurred until the early 1980s, when organ transplantation entered a new era with the availability of much improved immunosuppressive medications and with improved outcomes after transplantation. As a result, concern about the chronic scarcity of transplantable organs increased and several congressional committees and subcommittees held a number of hearings on transplantation. These hearings addressed several topics, including a possible federal ban on organ sales. This topic became all the more urgent when a former physician in Virginia proposed to set up a brokerage firm to purchase organs, particu-
larly in developing countries, for transplantation in the United States. Expressions of outrage were widespread (Denise, 1985), and the 1984 National Organ Transplant Act (Public Law 98-507) made it illegal “for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce.” Several states also enacted bans.
These legal bans did not end the discussion. The discrepancy between organ supply and need remained troubling; and even though the rates of organ donation increased, they remained disappointing, even with the adoption of measures such as required request, which assumed that there was no shortage of givers, only a shortage of askers (Caplan, 1984; Caplan and Welvang, 1989). Not surprisingly, proposals for the use of financial incentives and new nonfinancial incentives emerged with greater frequency and forcefulness. The most radical of these proposals involved legalizing the purchase and sale of organs in a free market.
In fact, allowing an unregulated free market in organs is too radical a departure from current practice to be a feasible alternative. The policies under active consideration are more likely to involve the provision of limited financial incentives defined through administrative processes and provided under highly regulated conditions. Nevertheless, consideration of the case for such a market is a useful exercise. It shows that an unregulated free market is unlikely to live up to the claims that its advocates make for it, given the actual circumstances of the human organ supply and organ demand in the United States. Consideration of the case for a free market in organs also provides insights useful in the evaluation of the more limited incentive-based proposals for increasing the supply of organs available for transplantation.
WHY A FREE MARKET IN ORGANS IS PROBLEMATIC
Many economists begin from the position that a market is almost always the best way to allocate a scarce resource. In the standard model of a competitive market economy, markets use prices to allocate scarce resources in an automatic, decentralized fashion. In each market, the price of the good adjusts until the amount that suppliers are willing to sell at the prevailing price equals the amount that consumers are willing to pay. A higher price coaxes out more supply by making it worthwhile for producers to produce more of the good or, if the total amount of the good is fixed, by encouraging the current owners to put more of the good up for sale. On the demand side, a higher price chokes off demand, as some buyers decide that the good is not worth the new price to them.
In this model, the market outcome can be considered both efficient and equitable, provided the distribution of income and assets meets a commu-
nity standard of fairness. On the demand side, price rations the good to the people who value it the most, that is, those who need it the most, where need is assessed by the people concerned rather than a regulatory body. On the supply side, the supplier is compensated for the cost of production, including a reasonable profit; and in general, resources are directed to the most productive uses. If all markets are perfectly competitive, the resulting distribution of goods is efficient; and because it is the result of voluntary trades from a fair initial distribution of income and assets, it can be argued that it is also equitable.
On the basis of this model, permitting a market in organs could be an equitable and efficient way to achieve an increase in supply that would reduce the number of people on organ transplant waiting lists. However, this conclusion is dependent on the accuracy of the strong assumptions that underlie the theoretical model. When the assumptions do not hold, the normative arguments for the desirability of markets do not hold either. A market process might still be preferable to the available alternatives as an instrument for increasing the organ supply, but the case for it must be built, brick by brick, in light of the actual circumstances. Because the application of the market model raises different issues on the supply side and the demand side, the chapter will address them separately.
The Supply Side of an Organ Market
The market model’s assumptions about supply seem most plausible for living donors. In living donation, a mentally competent adult has an organ (or organ part) that can be supplied to the market at some risk and financial cost. When the person donates the organ or organ part, that is, supplies it at a zero market price, he or she suffers a loss as a result of the discomfort of the operation, the opportunity cost of the time involved, and the long-term health risks. The donor’s expectation of a benefit to the recipient is some compensation for this loss, which is why some organs are supplied at a zero price. Reducing the donor’s loss by making a financial payment for the organ seems fair, however, and it seems likely that more people would be willing to provide organs as a result. In an efficient market, the additional organs would come from those who require the least financial compensation for the organ and for enduring the donation process.
In evaluating a policy of allowing payment for organs from living donors, two issues that are not assumed in the standard market model become important: distributional inequity and imperfect information. Many people would agree that large, unjust disparities in income and assets exist among Americans. Poor people value extra money more highly because they need it for basic necessities, so the additional organs are likely to come from the poor, a result many find morally troubling. A common economist’s
response to this concern is, “True, the distribution of income and assets is not fair. But if society cannot (or will not) do anything about it, is it fair to deprive people of an opportunity that they believe would improve their situations? Competent adults should be free to make their own decisions about the medical procedures that they will undergo and the risks that they will take.”
This argument is compelling superficially, but it assumes that the organ suppliers have the information and the capacity that they need to make the decision. Information about the long-term risks of donation may not be complete, and the buyers of organs have an incentive to understate the risks. In an unregulated market, organs are likely to come from people who do not fully appreciate the risks that they are taking. Avoiding this result would require the development of complete information for potential living donors and other efforts to ensure that the decisions made by living donors are fully informed, which would require planning and substantial resources. Concerns about inadequate information arise, however, even under the gift model now in place and are discussed in Chapter 9 of this report.
The living-donor case is mentioned here mainly to contrast it with the far less straightforward case of obtaining organs from deceased donors. In the latter case, the organs become available only when the person dies. There is no risk to the donor at that point, but a financial payment would not provide any direct benefit to the donor either—the benefit to the donor arises from the interest that the donor had while alive in providing for the well-being of his or her family after death. In practice, the family of the donor often makes the donation decision, and market advocates usually assume that the payment would be made to the family. Essentially, this means that the family is selling a relative’s body parts, which raises the issue of cultural norms surrounding the treatment of dead bodies.
Commodification of Dead Bodies
Most societies hold that it is degrading to human dignity to view dead bodies as property that can be bought and sold. As explained in Chapter 3, bodies are supposed to be treated with respect—with funeral rites and burial or cremation—and not simply discarded like worn out household furniture and certainly not sold by the relatives (or anyone else) to the highest bidder. These norms are very powerful. Illicit markets for bodies have existed throughout history; for example, in the 19th century, England had an illicit market in which bodies were dug up in the night by body snatchers and sold for dissection, arguably a socially useful purpose (Richardson, 2000). Buying and selling bodies for dissection was considered a despicable business, however, and even desperately poor people did not willingly sell their relatives’ bodies for whatever they could get.
Organ transplantation has provided a compelling justification for using the body parts of deceased individuals, namely, the opportunity to restore life and health to someone on the brink of death. Many people see donating a person’s organs for this purpose as a highly meritorious act that honors the sacredness of the body rather than degrades it. At the same time, however, many people regard the act of donating the organs for this purpose as being conceptually and morally distinct from the act of selling the organs (even when the organs are to be used for the same purpose). Currently, the sale of solid organs is prohibited, but the prohibition reflects preexisting and widely accepted cultural norms. In the context of these norms, and the attitudes underlying them, it is not at all clear that the supply of organs from deceased donors would actually increase if sales were made legal. It is possible that the reasons people have for not donating cannot be overcome by money, or that offering money induces some to provide organs while leading an equal or greater number of people who would have provided organs to decide not to. For example, family members may wish to avoid appearing to be profiting from a deceased relative’s body, especially if there is any chance of appearing to have participated in a treatment decision that might have hastened death. (These concerns about how allowing the buying and selling of organs would affect the attitudes and behaviors of families are explored in greater depth later in this chapter.)
Barriers to a Futures Market
Traditionally, the relatives of deceased individuals had the final word about whether organs would be donated, but this has been changing. Because society supports the right of individuals to control what happens to their bodies when they are alive, it is a natural extension to assume that they should also decide what happens to their bodies after death. This adds more intricacy to the application of the market model. Because money is of no use to a corpse, for financial payments to influence the donor’s decision, one must introduce a futures market or a bequest motive into the picture.
A futures market is a market in which the commodity bought and sold is the right to sell organs at a future time in the event that a person dies in circumstances that permit organs to be recovered and transplanted. The person receives payment for these contingent organ sale rights while he or she is still alive. Futures markets are inherently complex. In this case, the chances of dying in the appropriate circumstances are low, death may occur far into the future, and it may not be easy to execute the right to the organ at the appropriate moment; therefore, the right to a potential organ is not worth nearly as much as an actual organ at the time of death. What if sellers want to change their minds? Can they rescind their contracts and, if so, on
what terms? Also, once the rights to an individual’s organs have been sold, the buyer (who would probably be an organ broker) has a financial interest in the seller’s death. Some people already worry about receiving suboptimal treatment at the end of life if they are registered organ donors and adding financial interests resulting from the selling of organ rights might add to those concerns. Further, it seems unlikely that there would be enough interested investors to allow a private futures market in organ rights to develop, given the long time horizon required and the uncertainty about the size of the profits.
Alternatively, one can assume that people get satisfaction in life from the knowledge that their heirs will receive inheritances when they die. If this is so, a person could be allowed to spell out his or her wishes for the disposition of his or her body in advance (in a will or in a special organ donor registry) stating whether his or her body should be buried or cremated intact, donated all or in part to a specific organization for a specific purpose, or sold whole or in part with the proceeds forming part of the estate. To the extent that more people would agree to organ removal if they had this option, the supply of organs would increase. This is an empirical question, and as before, there is no certainty of a positive effect. Again, implementation would be complex. For example, a registry would be better than a will, because one cannot wait until the will is probated to determine whether the organs can be sold. The possibility of such an advance directive is discussed later in the chapter.
It has been assumed thus far in the discussion that paying people or their families for organs would increase the supply of organs for transplantation. However, some other complexities of the organ procurement process suggest that the creation of financial incentives for organ donation may be less important for donors and their families than it is for healthcare organizations and the participating healthcare professionals. A family does not simply make the decision to donate (or to honor the decedent’s wish to donate) and then it happens automatically. First, the potential donor must be in the process of dying under the right circumstances to be eligible to donate his or her organs. Second, the medical staff must make the family aware of the possibility of organ donation. Only then does the opportunity to say yes or no to donation arise. Many people have not thought much about organ donation before the issue arises, and in any case, they are in an extremely stressful situation. How and when they are told about the opportunity for organ donation and the way in which the request is made can make a significant difference to the relatives’ response. Finally, the organs
must be removed, the recipients must be identified, and the organs must be transported to their final destinations. These are complex tasks that must be carried out under extreme time pressure.
Many factors—including the structure of financial incentives to the healthcare workers and organizations that carry out these organ transplant-related activities—influence the way in which the process of notification, request, removal, and conveyance to a recipient occurs. If this process is the problem, the introduction of financial payments for organs may simply raise the cost of the transplantation process without having any effect on the number of organs recovered. The efforts and successes of the Organ Donation Breakthrough Collaboratives of the Health Resources and Services Administration suggest that the process is part of the problem and, indeed, is perhaps most of it (Chapter 4). The collaboratives have demonstrated that the application of quality improvement methods to the steps in this process can significantly increase the percentage of potential organ donations that are converted into actual donations. There is also potential to increase the organ supply through medical practice changes that make more decedents medically eligible to be organ donors (see the discussion in Chapter 5 on donation after circulatory determination of death), that is, to give more people the opportunity to consent.
The Demand Side of an Organ Market
The demand side of an organ market is also complicated. The simple market model assumes that those who benefit from the use of the good pay for the good, and this is an important element in the normative theory in favor of markets. In the case of organs, advocates for payments for organs from deceased donors generally do not expect the recipients to make the payments. Most people believe that health care is a special kind of commodity that should not be allocated strictly according to an ability to pay because of the unusual importance of health care to the well-being of all people and the uneven distribution of illness among the population. The distribution of health care, especially life-saving health care, should be determined separately from the distribution of other goods and in accord with special ethical principles. This is a major departure from the standard market model and means that even if a fair distribution of income and assets could be arranged, letting health care be determined by voluntary market trades would not yield equitable outcomes, even under the highly unrealistic assumption of the existence of a perfectly competitive market.
In the United States, the result of this societal value judgment is a complex array of private and public policies that are implicitly or explicitly intended to provide people with care that they would not receive if all health care were distributed through unregulated private markets. Unfortu-
nately, there is no general, transparent consensus on the nature and extent of healthcare services that people should be able to receive without regard to the ability to pay and how the cost of that care should be distributed across the population. The unfortunate result is a financing system that distributes both care and cost arbitrarily in a manner that meets no rational standard of efficiency or equity.
The U.S. healthcare system does not guarantee access to life-saving treatments such as organ transplantations, and the ability to pay does play a role in the distribution of this important good. Few people pay directly for organ transplantation, which is expensive even without payment for the organs. People in need of organs rely on public or private insurance to pay the cost of acquiring the organs and transplanting them, and a transplant is not received unless insurance coverage or access to charity care is available (the so-called green screen).
Given this system of healthcare financing (or any system that might replace it), what would the demand side of a market for organs look like? Presumably, most of the actual buyers would be the healthcare organizations that perform transplantations. They would compete with one another for the available organs, the price would settle down at the market-clearing price, and the cost of organs would become part of the total charge to a third-party payer for an organ transplant. This market would inevitably be very complex.
So far the chapter has referred to “the price” of an organ, but an actual market would have multiple prices for organs because organs are highly differentiated products. For example, hearts differ from kidneys and kidneys differ from one another along many medically significant dimensions. Organ recipients also differ from one another, and matching an organ with the right recipient is important in achieving the benefits of transplantation. This means that the kidney market or the heart market would actually be a whole set of interconnected markets for goods that are close substitutes for each other (e.g., kidneys or hearts from people of different ages, with different blood types, or different human leukocyte antigen factors). The price of a kidney would therefore actually be a price structure for all the different kinds of kidneys. This price structure would result from the interaction of the array of kidneys available with the variety of patients in need of a kidney at any point in time and the trade-offs among kidney characteristics that are medically possible for transplantation into various patients.
Of course, the original suppliers and the end users of the organs do not have the medical knowledge to make sophisticated sales and purchase decisions, and even if they did, they are hardly in the best physical condition to apply their knowledge at the time of donation or transplantation. Like the rest of the healthcare market, this market would be characterized by complicated agency relationships (situations in which decisions are made by an
expert on someone else’s behalf). The various potential agents here would include the transplant recipient’s physician, the organ donor’s physician, the healthcare organizations in which the organ recovery and the transplantation occur, a specialized organ “broker” such as the United Network for Organ Sharing (UNOS), the private and public third-party payers that pay for the transplantation-related care, and so on.
Real-world markets in which differentiated products are sold under circumstances of imperfect information and intricate agency relationships do exist, and such markets can be superior to other methods of allocation. In the case of organs, however, it is interesting to note that a nonmarket process for allocating organs to recipients and managing waiting lists has been in place since the beginning of the transplantation era. The Organ Procurement and Transplantation Network system grew up in response to a perceived need to manage the organ allocation process within the transplantation community, although it has come to have substantial government involvement. There is ongoing pressure to adjust the process to make it more efficient and equitable, with the usual difficulties in defining exactly what efficiency and equity mean in such a complicated context. There is also recognition that financial and other incentives should be aligned with ultimate goals, but little enthusiasm for relying completely on an unregulated market process exists.
In summary, in a hypothesized market for organs, the good to be sold is highly differentiated and must be matched to the final user in many ways. The process of making an organ available requires skilled labor and technology. The good is highly perishable, and recovery and transfer to the final user must be accomplished under extreme time pressure. The good has unique cultural significance that would powerfully influence the response of suppliers to market incentives, even in the absence of the existing legal constraints on their behavior. Imperfect information issues are significant, and the end user is not in a position to act as an informed buyer. The need for information, skilled labor and technology, and third-party payment means that the market transactions involve complex agency relationships. With all of these departures from the standard assumptions of the market model, organ transplantation occurs in a world of imperfect markets when it comes to evaluating efficiency. A perfectly functioning market and a fair distribution of income and assets would not likely produce equity in the current healthcare system. As a society, it is not clear what an equitable distribution of health care and its cost would look like, but it is generally agreed that the distribution of organ transplants should not be totally determined by the ability to pay.
Given all of these factors, the committee doubts that it would even be possible to have a well-functioning free market in organs from deceased donors. If such a market existed, there is no certainty that it would produce
a greater supply of organs. Moreover, a free market in organs would deviate substantially from prevailing norms in the United States regarding the nature of health care and the fair distribution of organs for transplantation, norms that have been developed within various communities of stakeholders and that are now well entrenched.
REGULATED COMMERCE IN ORGANS
The proposals that warrant more serious consideration involve cash payments for organs—or other financial incentives for organ donation—determined within a regulatory framework. They focus on obtaining organs while leaving organ distribution and allocation to other mechanisms, either current or newly devised.
For concreteness, the committee considered the prototypical proposal to be one in which organs are purchased from the families of deceased individuals within a regulated system. It is assumed that the proposal specifies that either (1) the family makes the decision to provide the organs or (2) the individual makes an advance decision, with the family deciding only if the decedent’s wishes are unknown. In either case, if the decision is made to provide the organs, the donor’s family would be paid a specified price for one or more of the deceased person’s organs (assume $2,500 for a kidney). In theory, the regulatory framework could be established by the government, a private nonprofit organization, or some combination thereof. To be stable, however, the framework would have to have government sanction, and the details of its structure would therefore be perceived to be an expression of social values. The committee’s evaluation of this proposal proceeds in three steps. (1) Should organs be bought and sold? Here the commodification problem is addressed. (2) If it is assumed that the selling of organs is not categorically objectionable on moral grounds, would payment for organs actually increase the supply? (3) If it is assumed that paying for organs would increase the supply, is doing so at this time the most cost-effective policy option?
Should Organs Be Bought and Sold?
The first question that arises is whether society should allow organs to be sold at all, even when the price is regulated and the organs are to be used to save lives. As indicated in the previous section, the existing approach—in which organs are gifts rather than items for sale—rests in part on a widely shared supposition that solid organs of deceased individuals should not be bought and sold. This tradition is expressed in the ban on the exchange of organs for valuable consideration in the National Organ Transplant Act. The basis for this traditional view is explored to consider the possibility
that it should be discarded. The possibility of shifting from a model of donation to one of payment for organs raises a fundamental question: to what extent should transplantable organs be treated like other commodities in the American society and healthcare system, where financial incentives play a significant role in eliciting supply?
Every society draws lines separating things treated as commodities from things that should not be treated as “for sale.” Americans in the 21st century, for example, do not sanction the buying and selling of human beings. The lines between things that are commodities and things that are treated as being outside the realm of market exchanges are blurry and are always changing, however. Some years ago, for example, policy makers promoted the selling of blood to increase the availability of blood products, only to then step away from the practice in the wake of growing concerns about the fact that payment encouraged donation from people whose blood compromised the safety and the quality of the blood supply (Contreras, 1994; Eastlund, 1998). The selling of sperm appears to be uncontroversial in the United States, but the buying and selling of eggs, although widespread, is less accepted (Meyer, 2001). Commerce in eggs raises ethical concerns related to the fact that eggs are unlike sperm and blood, in that the donation process is riskier for the donor and eggs are not renewable or replenishable (although a woman has a substantial lifetime supply). Human tissue is donated and is then processed, bought, and sold in a flourishing secondary market, but this market has also generated ethical controversy (Mahoney, 2000; Youngner et al., 2004).
Despite the growing market for body parts and products, there remains a strong societal taboo not only against buying solid organs from living people but also against buying and selling dead bodies or certain parts of dead bodies, including solid organs. Many people do not wish to see body parts commodified. Why is this? What is the moral difference between solid organs and parts of dead bodies and the body parts of living individuals that are now legitimate articles of commerce? Should people view bodies (or body parts and products) as property that can be bought and sold, should such buying and selling be legally permitted, and should it actually occur?
Advantages of the Gift Model
Those who defend the social norm that a dead body is not property to be sold argue that significant social benefits are associated with preserving that norm, namely, that it preserves a set of values about gift-giving that have been at the core of the donation and transplantation system. It is argued that the gift model of organ donation reinforces the values of human dignity, solidarity, compassion, and altruism (Murray, 1987, 1996; Kass,
1992; Delmonico and Scheper-Hughes, 2002). Family members frequently find organ donation to be healing, insofar as they may draw meaning out of an otherwise tragic situation (Burroughs et al., 1998); and skeptics of payment for organs argue that these psychological benefits may be threatened if the act of donation is viewed as a sale for one’s own benefit or as degrading the value of the deceased individual (Murray, 1996; Sells, 2003). In addition, as noted above, some argue that if financial payment for transplantable organs becomes socially acceptable, the overall social norm that bodies are not property is likely to erode. In this view, the radical uncertainties associated with potentially shifting the meaning of organ transfer from “gift” to “sale” should give advocates pause, for such a shift could result in negative effects that are difficult to identify in advance and that could be profound.
Is There a Liberty Right to Sell Organs?
Some advocates of payments argue that individuals own their organs and accordingly should enjoy liberty rights to sell what they own. Libertarians frequently appeal to the basic principle that people should be free to control their own bodies, as long as no harm is done to others. When organs are recovered after death, one might argue that the exercise of this liberty harms neither the donor nor society in any direct fashion and that this use of organs is thus overwhelmingly beneficial to the individuals who need organs and to society at large. The prohibition of compensation, in this view, violates the autonomy of the individual and limits his or her ability to make a significant contribution after death by improving the length and quality of life of others in society. In spite of the religious and other arguments in support of a ban, others question whether the state has the moral authority to prohibit the sale of body parts when informed consent is given (Cherry, 2005; Taylor, 2005). In response, some philosophers and theologians challenge the ownership metaphor, suggesting instead that individuals are better understood as having stewardship over their bodies (Caplan and Coelho, 1998).
Even if the libertarian argument that individuals have the presumptive right to sell one’s own body parts is assumed, two limitations must be noted. First, the living person’s hypothesized liberty interest is not an absolute one and is subject to being overridden by important societal interests. Thus, for example, if payments to individuals were to interfere with efforts to maintain support for organ donation and were to reduce the organ supply, as suggested above, then the state could reasonably restrict an individual’s right to sell his or her organs. Second, the libertarian argument focuses on the living person who “owns” his body; it does not entail the conclusion that a family has a right to sell the deceased person’s organs if
the deceased has not exercised his or her own right to do so. To make that case, one must posit that families have a property right in the body, a claim that is more problematic in both philosophical and legal terms. As discussed in Chapter 3, the most expansive legal understanding of the rights of families is that they have a legally protected interest (sometimes characterized as a “quasi-property interest”) in having possession of the body and in making decisions about its disposition. However, these interests have never entailed a right to sell the body parts, nor have libertarian philosophers postulated that families own the dead bodies of their loved ones. Thus, if the case for a family’s prerogative to sell the organs of a deceased family member is to be made, it will have to rest not on a rights argument but, rather, on the claim that according to the family this prerogative will produce beneficial consequences, that is, that it will increase the supply of organs.
Would Payments Actually Increase the Organ Supply?
The primary argument for paying for organs is that doing so will increase the number of organs available for transplantation. Although some advocates for payments acknowledge that the adoption of a sale model raises legitimate ethical concerns, they believe that the lives saved by increased rates of organ donation outweigh all opposing concerns (Barnett et al., 1992). However, the impact of payments on organ removal consent rates cannot be accurately predicted from the currently available data. As Kaserman and Barnett (2002, p. 101) observe, the reason why all existing data are inconclusive “is the fact that observable market transactions for cadaveric human organs have never taken place.”
Advocates of a sale model argue that because payments play a major role in motivating the provision of most goods and services, they are likely to motivate the provision of organs for transplantation (Schwindt and Vining, 1986; Cohen, 1989; Peters, 1991; Harris and Alcorn, 2001; Kaserman, 2002; Tabarrok, 2004). Some advocates assume that even a trivially small payment will increase consent rates dramatically because, after all, dead bodies have no practical use to families. The committee is skeptical of this conclusion, given the emphasis and resources that members of all cultural groups in U.S. society devote to giving deceased relatives a proper burial. A more plausible claim is that incremental increases in the payment would eventually result in a reasonable but not exorbitant payment level at which the vast majority of families would grant consent. Thus, if families were to respond to the financial incentive as they do to other commercial exchanges, it is conceivable that the shortage of organs could be significantly reduced, if not eliminated.
As noted earlier, however, the relationship between financial payments
and the willingness to provide organs may not conform to the pattern that applies to ordinary consumer goods. Many people now document a desire to donate, and more than half of families now consent to donation in the absence of any compensation. In some institutions participating in the Organ Donation Breakthrough Collaboratives, conversion rates for donation after neurologic determination of death are close to or exceed 75 percent. In a situation in which nonpecuniary ideals have traditionally motivated behavior, the introduction of payments may lead to a crowding out of other motivations (Frey and Jegen, 2001). The concern is that if organ donation were to become “commercialized” because of the use of payments, some families who are willing to donate under an altruistic system may refuse to provide consent for organ donation because the payment would seem to be insufficient compensation for violating the bodily integrity of the deceased family member.
The committee is unaware of any scientific research bearing on the possibility that legitimizing financial payments will crowd out nonfinancial motivations for organ donation or on whether the problem could be reduced in a carefully regulated market. Policy makers are left to speculate about the effects of allowing financial payments on the perceptions and attitudes of a heterogeneous population of potential donors and potential vendors with varied and complex motivations. Would setting a price for organs (by the government or a nonprofit organization acting on behalf of society) be interpreted by some families as a societal judgment on the worth of the person who has died? Would some families refuse to consent to donation to avoid the appearance of profiting from a relative’s body or to avoid the appearance of participating in a treatment decision that might have hastened death? One experimental organ donation survey found that when incentives for donation were introduced into a vignette that involved a decision to withdraw life support, people prolonged the use of life support (Evans, 2003).
Given these conflicting a priori arguments and the absence of empirical evidence on actual behavior, some researchers have attempted to gauge the impact of payments by drawing on surveys of public attitudes. Survey results must be interpreted with caution, however. The wording of surveys is important, as seemingly minor variations in wording can cause major shifts in responses. Few surveys ask respondents directly how payments would affect their decision to allow the recovery of organs from a deceased family member. Instead, many surveys simply ask whether respondents “support” payments as a tool to increase consent rates. Because the surveys do not ask explicitly whether it would it be good public policy to pay for
organs, the answers may simply reflect a belief that organ donation is a good act rather than a belief that paying for organs is a good policy. Moreover, surveys that do ask directly about the willingness to consent require many respondents to contemplate hypothetical situations that they have not previously considered, even on a casual basis. Comparisons of surveys that ask about the willingness to donate and actual registration rates often detect a disconnect between the responses and the actual behavior. Furthermore, the public lacks an understanding about the transplantation system, suggesting that public education efforts could shift opinion.
Despite these limitations, surveys provide inferential evidence bearing on the potential impact of payments on consent rates. Unfortunately, their findings are mixed and suggest that the public is largely ambivalent. The 2005 National Survey of Organ Donation (Wells, 2005) found that 18.8 percent of respondents would be more likely to donate a family member’s organs if they were offered a payment, 10.8 percent would be less likely to grant consent, and 68.2 percent would be neither more nor less likely to grant consent (2.2 percent of respondents selected “don’t know”). The responses to these questions from the 1993 survey were 12, 5, and 78 percent, respectively (Wells, 2005). In a recent survey of Pennsylvania households, 17 percent of respondents stated that direct payments would make them more likely to grant consent and 8 percent responded that monetary incentives would make them less likely to grant consent. The vast majority of respondents stated that payments would have no effect on their decision to donate (Bryce et al., 2005). A survey of 561 adults who had recently been asked to grant consent for organ donation found that equal proportions (approximately 11 percent) stated that incentives would make them more likely or less likely to donate and 78 percent stated that incentives would have no effect (Rodrigue et al., in press). Among respondents who had previously declined to grant consent, 19 percent stated that incentives would make them more likely to grant consent, 13 percent stated that incentives would make them less likely to grant consent, and 68 percent said that incentives would have no effect. The survey did not ask separate questions about monetary versus nonmonetary incentives.
Siminoff and colleagues reported that many families are confused about their liability for the cost of donation and funeral expenses, and these concerns are disproportionately held by families who refuse consent (Siminoff et al., 2001a,b). The possibility that consent rates could be increased by simply clarifying the fact that the family of a deceased organ donor does not incur any additional costs as a result of consenting to donate should be explored.
Some surveys ask respondents about their support for incentives generally, without inquiring about the impact of incentives on their decision to
donate or grant consent. Nelson and colleagues (1993), reporting on surveys by UNOS and the National Kidney Foundation in the early 1990s, found that 48 percent of respondents generally supported incentives. Responses varied across demographic groups, with younger, nonwhite, and lower-income respondents reporting higher levels of support for incentives of various sorts (Nelson et al., 1993; Bryce et al., 2005).
Religious Group Opinion
In addition to data from surveys of individual attitudes, the potential impact of the views of organized religion should be considered in assessing the impact of payment for organs on donation behavior. Some religious groups are likely to be fiercely opposed to any policies that appear to allow the sale of organs, on the grounds that such sales are an affront to human dignity. Organ donation currently enjoys strong support from most major religious groups; however, a policy of paying for organs may weaken or eliminate the commitment of religious organizations in encouraging their members to donate (Caplan et al., 1993; International Congress on Transplants, 2000; Arnold et al., 2002).
Opinions of Healthcare Professionals
The opinions of healthcare professionals are also a significant factor. Some data indicate that most healthcare professionals involved in the donation process would be less comfortable requesting organ donation if financial incentives were offered (Altshuler and Evanisko, 1992). Because uncomfortable requesters are less likely to obtain consent (Malecki and Hoffman, 1987), donation rates could decrease. Moreover, in testimony before the committee, organ procurement organization (OPO) requesters were adamant that offering cash payments to donor families while simultaneously appealing to their altruism would be awkward. Some families may respond positively, but they fear that the commercial nature of the transaction may turn off others.
Even if Paying for Organs Would Increase Supply, Is It the Most Cost-Effective Policy?
In sum, the committee strongly doubts that paying for organs would substantially increase the supply of transplantable organs, notwithstanding the common assumption to the contrary, especially among economists. Assuming, however, that paying for organs would increase the supply, one must still ask whether this is the most cost-effective approach to achieving the expected increase. In considering the cost of a system of
regulated payments, the most obvious cost is the total cost of the payments themselves. The cost of each additional organ is not just the payment for that organ, however. Once a socially sanctioned payment system is in place, the payments will presumably be made to every organ donor family. For example, suppose there are 10,000 eligible organ donors, each donor can provide one transplantable organ, and initially, there is a 50 percent consent rate, producing 5,000 organs. If the consent rate increases to 52 percent in response to a $2,500 payment per organ, 200 more organs become available, to yield 5,200 organs. The total amount of the payments for all the organs would be 5,200 × $2,500 = $13,000,000, which means that the average cost of each additional organ is not $2,500 but $65,000 ($13,000,000 divided by 200). Of course it is important to consider that the real resource cost of a dollar spent on payments (which is transferred rather than consumed) may differ from the real resource cost of a dollar spent on other programs to increase donation (e.g., a print media campaign to encourage donation). Costs related to administering the payment system (establishing the payment levels for the organs, identifying the appropriate recipient, etc.) must also be incorporated into these figures.
Is an additional organ worth this amount? First, it is important to note that the question does not arise in a purely private market, or, more accurately, it does not arise as a policy question for society. The individual sellers and buyers in a market make their own individual decisions about what they are willing to accept or pay for a commodity, and the market price adjusts to equilibrate the amounts supplied and demanded. In a regulated organ market, however, the size of the administered price is a policy question. The government or a government-designated agent for society would have to establish the price, and collective resources from private and public insurance programs would be used to cover the payments. To determine whether this is the best use of these resources, their opportunity cost should be considered. What benefits to society result from this use of the resources? What societal benefits would the next best use of the resources produce?
Chapter 1 presented some estimates of the monetary value to society of increasing the supply of organs. These estimates suggest that increasing the organ supply would produce substantial benefits in exchange for the associated increase in healthcare costs; in the case of kidneys, increasing the supply may even produce a net cost savings because the recipients of successful kidney transplants no longer need dialysis, an expensive treatment that is covered under Medicare’s End-Stage Renal Disease program. If the estimates in the literature are accepted as correct, a payment of $65,000 or even more might be considered reasonable to obtain an additional transplantable organ.
The value of an additional organ is not the question here, however. Rather, the question is, given that the goal is increasing the supply of organs, how does the cost of doing so through a regulated market in organs compare with the cost of increasing the supply in some other way? Reaching an answer to this question requires a series of analyses. First, as already noted, there is substantial uncertainty about whether a regulated market system would in fact increase the organ supply, and it is possible that the supply would actually decrease. Second, potential costs to society have been identified that are over and above the direct costs of the payment program as a result of the impact on the transplantation program and society in general of the commodification of body parts. These costs are difficult to predict and even more difficult (perhaps impossible) to quantify, but they could be substantial. Third, and most important, some alternative options are at least as likely to increase the organ supply but do not generate the same level of ethical controversy or present the same concerns about unanticipated societal consequences.
Two especially promising options are the use of quality improvement techniques to improve the process of organ donation under a gift model (Chapter 4) and making medical practice changes that increase the number of decedents who are potential organ donors (Chapter 5). These changes carry costs also, but these costs are modest in relation to the additional expenditures that would be required to operate a regulated market, and they do not entail the ethical and social concerns associated with commerce in organs. Moreover, these two changes are desirable in any case, and given the concerns of healthcare professionals about introducing payment into the process of requesting donation and removing organs and the concerns of the public about the appropriate treatment of patients at the end of life, the committee thinks that the changes could be more easily implemented in an environment in which organs are donated, not sold.
FINANCIAL INCENTIVES WITHIN A DONATION FRAMEWORK
The committee believes that there are powerful reasons to preserve the idea that organs are donated rather than sold. The gift model now elicits donations from more than 50 percent of families, and improvements in the organ recovery system suggest that the rate can be significantly increased to 75 percent or higher. However, the question remains whether rates of donation would increase even more if current motivations to donate were reinforced by the provision of something of material worth. Human behavior is complex, and people often have multiple motivations for engaging in an act. For example, charitable gifts continue to be perceived as donations, even though they are also accompanied by tax incentives. Under the right
circumstances, donated organs might continue to be viewed as gifts, despite the presence of financial incentives.
A number of approaches have been suggested for indirect financial incentives that would be paid to a third party and thereby reduce the concerns raised by direct compensation. Incentives could have a benefit to the individual while living (e.g., reduced life or health insurance premiums) or could benefit the family members and heirs after death (e.g., income tax deductions or credits, payment of medical expenses, payment of funeral expenses, college education benefits for children, or providing life insurance coverage) (see for example, Siminoff and Leonard, 1999; Arnold et al., 2002; Parker et al., 2002). Contributions made to a charity on behalf of the decedent could also be considered as an indirect financial incentive.
To provide a specific context for discussing the issues regarding financial incentives, the committee decided to focus on one approach; this chapter assumes that the financial incentive is a $1,000 payment to the family to defray funeral expenses (linked either to the advance directive of the deceased donor or to the decision of the family to donate after the death). The possibility of giving people a financial incentive to register as a donor is considered below.
Financial incentives for donation are meant to function within the gift model of donation. Proponents of this approach argue that the distinction between an incentive of material value and a payment for organs is sometimes lost in public discussions. Whether or not the strengths of the gift model can be preserved when donation is rewarded by a financial payment depends entirely on whether this distinction can be upheld. It would need to be upheld in the minds of families that consent, even after the decision to donate has been made. For example, would families question whether their decision to donate was motivated by the desire to save the life of others or by the funeral benefit? Would this affect the meaning that they find in donation? Again, these are empirical questions to which answers are lacking.
The Commodification Issue
Thoughts vary on whether a financial incentive for organ donation successfully avoids the commodification concern and preserves the strengths of the gift model. Offering and making a $1,000 payment earmarked for the deceased donor’s funeral expenses as an incentive to consent to donation and an expression of gratitude for the decision may be conceptually and morally distinguishable from buying an organ. Such a payment in no way reflects the actual value of the organ, and it would be positioned within a gift model of organ donation, analogous to a tax incentive for charitable giving rather than a purchase. Proponents of this view believe that such a benefit can be presented to the public in a way that avoids the perception
that deceased bodies are being commodified and that allows families to preserve the healing meaning that they may find in donation.
Others have thought that a payment (or tax incentive) contingent upon the provision of an organ is not genuinely distinguishable from a payment for the organ. They believe that a financial incentive policy would immediately be interpreted by many members of the public as allowing the sale of organs, albeit under controlled conditions. For example, in 2002 an ethics panel of the American Society of Transplant Surgeons (ASTS) made a statement in which the members of the panel unanimously opposed the exchange of money for organs, whether it was in the form of direct payments or a tax incentive. However, the panel stated that as a sign of gratitude it would be acceptable to provide some level of reimbursement for funeral expenses. ASTS was surprised to find that the Medical Post wrote an article on the panel’s actions entitled “Paying for Organs.” Its first line read, “American transplant surgeons and ethicists have ventured onto a tightrope with their recent suggestion that families who donate a deceased relative’s organs be given some kind of financial compensation” (Murray, 2002). The concern is that providing an “incentive” or “expression of gratitude” of material value in exchange for “donation” of an organ while claiming to oppose the sale of organs would be perceived as hypocrisy and would decrease respect for the organ transplantation enterprise.
Impact on Donation Rates
Although the point of the financial incentive is to increase the supply of organs, there are a priori reasons why it could either increase or decrease donation rates. To the extent that the incentive is not perceived as a payment, one might argue that altruistic motives would be less likely to be crowded out by pecuniary motives than they would be under a regulated market model. As noted above, however, it is by no means clear that the transplantation community can control public perceptions of incentives, particularly if they have significant material value.
Payments to Families for Funeral Expenses
Survey data consistently indicate that the public would be more receptive to an incentive program involving a funeral payment than a direct cash payment for organs. In the Pennsylvania household survey referred to above, 17 percent of respondents stated that a direct payment for organs would make them more likely to consent to donation, 8 percent stated that payments would make them less likely to do so, and the vast majority stated that payments would have no effect on their decision. In contrast, when the respondents were asked about funeral benefits, 23 percent stated that they
would be more likely to grant consent and only 3 percent stated that they would be less likely to grant consent (Bryce et al., 2005). The same study found that general support for funeral benefits was 81 percent, whereas support for cash payments was 53 percent.
Support for financial incentives among transplantation professionals and within the medical community more generally is fluid, with support for incentives increasing over time and with support for indirect incentives stronger than that for direct incentives (Joralemon, 2001). A 1992 survey found that a vast majority of professionals involved in organ procurement oppose financial incentives of any kind (Altshuler and Evanisko, 1992). More recently, several professional associations, including the American Medical Association and the Organization for Transplant Professionals, have indicated cautious support for pilot studies or demonstration of incentives (NATCO, 2002; Taub et al., 2003). Other groups, such as the National Kidney Foundation, remain opposed (NKF, 2002).
The committee acknowledges that at present it is impossible to know the impact that incentives would have on the rates of organ donation. Moreover, although the impact could be positive, it is far too easy to imagine scenarios in which a $1,000 payment toward funeral expenses would be perceived in undesirable ways: as an insultingly low payment given the real cost of a funeral and the vast amount of money invested in organ transplantation; as a payment intended to purchase organs; as a conflicting interest in the decision making of a family; or as a motivation that shifts attention from intrinsic motivators (e.g., the “gift of life” that many families find healing). Given the substantial uncertainty about the effects of offering financial incentives for donation and the genuine possibility that it could reduce the rates of organ donation, the committee is not in favor of making financial payments to benefit families, whether directly or indirectly, to increase organ donation rates.
Payments to Register
In the second prototypical proposal involving payment, individuals are paid to register their agreement to have their organs removed at death for the purpose of transplantation (with no payment to the family). Again, the supply effect is uncertain. The number of registrants might increase, but practical problems may arise later on. Because the decision to register as an organ donor may occur many years before death, some individuals may change their minds and wish to deregister. Individuals could be allowed to deregister by paying back the money that they initially received to register. What would happen, however, if a registered organ donor clearly stated before his or her death that he or she no longer wished to donate but
refused to pay the money back? OPOs might find it difficult to proceed with organ removal even if they had the legal right to do so.
Paying individuals to register makes sense only when the registration decision alone is used as the basis for organ removal. In practice, until recently most organ procurement organizations would not recover organs from a registered organ donor if his or her next of kin objected. Registries have existed mainly as a mechanism to allow individuals to communicate their preferences to family members, not as a binding contract. Under such circumstances, it is possible that paying individuals to register would actually decrease consent rates (Byrne and Thompson, 2001). Consider the situation of a family trying to divine the intent of a deceased relative. If the individual registered but was not paid to do so, then the family may correctly infer that the individual wished to donate. However, if the individual was paid to register, then it is not clear if the registration signaled the intent to donate or only the intent to obtain the payment. In Georgia, where until recently organ donation registrants obtained an $8 discount on driver’s license registration fees, the OPO did not use registration as an indicator of donor intent for this reason. Paying registrants may not increase consent rates under such circumstances.
On the other hand, making registration into a firm contract that is difficult to back out of and always overrides family wishes may make some people less willing to register as donors, despite the payment. Under these circumstances, a family may assume that the decedent does not want to donate because he or she did not register, despite the financial payment. Essentially, payment interferes with the signal that families obtain from the individual’s decision to sign up with an organ donation registry.
One response to the uncertainty about whether financial incentives for donation would increase the supply of organs for transplantation is to implement a pilot program that would try out a payment system on a small scale and study its effects. This proposal has several drawbacks, however. First, those who find payments to be morally unacceptable in principle are naturally opposed to a pilot study, so relying on experimentation does not avoid the underlying controversy. Second, a pilot study has a limited ability to produce the information needed for policy decisions. The pilot study may produce evidence of an increase in supply in the short term, but by its nature it cannot produce evidence on the longer-term effects on the transplantation enterprise and society that are of concern. As payment gradually changes perceptions, and comes to be viewed as a routine part of donation, consent rates may decline for families with primarily altruistic motives.
Furthermore, if a payment does not increase the organ supply in the pilot study, it could be argued that the circumstances of the pilot study were at fault, that the payment should have been a little higher, and so on. Finally, conducting the pilot study might make it difficult to retreat to the original position of prohibition of the provision of financial incentives for organ donation, even if the study did not yield positive results. In short, the committee believes that a pilot study of the effect of financial incentives should be undertaken only if other, less controversial strategies of increasing organ donation have been tried and proven unsuccessful and if, as a result, policy makers have become inclined to implement such a strategy. The pilot project would then be understood to be a carefully designed, initial step in the implementation of a new policy rather than as an experiment. Under the present circumstances, the committee sees little value in undertaking such an experiment.
PAYMENTS AS A TOKEN OF GRATITUDE
The committee’s charge was to consider ways of increasing the rates of organ donation in the United States. Therefore, the provision of anything of material worth in the context of donation has been considered primarily through the lens of its potential impact on the rates of donation. However, a funeral benefit, for example, might be presented exclusively as a token of gratitude rather than an incentive to donate (which is precisely how ASTS framed a proposed funeral benefit in 2002). Alternately, a funeral benefit might be understood as a form of good stewardship or proper treatment of the deceased body that was made available to the transplantation community before the funeral services. This view suggests that, through the act of donation, the transplantation community acquires an interest in the proper burial or cremation of the deceased body; the interest may not be as strong as the immediate family’s but nonetheless sufficient enough to contribute to funeral expenses.
Although the committee acknowledges that these motives for covering a funeral expense are both legitimate and morally distinguishable from the motive of increasing organ donation rates, the committee rejected the proposal to provide funeral benefits, even if it is justified and explained on these grounds. First, because such benefits are of material value, it is feared that the public would not distinguish them from payments for donation or for the organs themselves. This could then contribute to perceptions of duplicity or deception. Second, because the benefits involve material value, there is no way to prevent them from functioning, in economic terms, as financial incentives; and thus, they potentially raise the same concerns as financial incentives including the risk of diminishing the meaning of dona-
tion for families, crowding out of other motivations, or polarizing the community.
The committee hastens to emphasize that societal expressions of gratitude toward deceased organ donors (e.g., a donor medal of honor) are appropriate, but tangible gifts should not have such significant material value that they would provide a monetary incentive for donation.
NONFINANCIAL INCENTIVES: PREFERENTIAL ACCESS TO DONATED ORGANS
The two forms of nonfinancial incentives generally proposed are community recognition and preferential access to donated organs. Community recognition might take the form of a public appreciation ceremony or the awarding of a medal of nominal material value to people who register as potential organ donors or to the families of deceased donors. There is general agreement that the decision to donate deserves gratitude and community recognition, but it is also agreed that the impact of recognition programs on organ donation rates would be small (Arnold et al., 2002). The committee regards public expressions of gratitude less as incentives than as mechanisms of persuasion and as opportunities for raising the visibility of organ donation, capturing public attention, and communicating pertinent messages and information (Chapter 6). This section therefore focuses on preferential access proposals.
Proposals to give people who have registered as organ donors preferential access to available organs conform to either of two models. Pure reciprocity models restrict the pool of organ recipients to those who are willing to donate their own organs (and, in some cases, to those not only willing but also eligible to donate their organs). Preferred allocation models do not restrict the pool of eligible recipients to people who have recorded their willingness to donate but add extra points for being a registered donor to the priority score used in allocating organs to recipients (just as UNOS’s current system awards priority points for medical urgency, the length of time on the waiting list for an organ, and the level of organ match). Such programs would be most effective with government sponsorship; however, because they are currently neither funded nor prohibited by U.S. law, implementation has occurred only in the private sector, for example, through the LifeSharers program, in which members use advance directives to direct donation to other members (LifeSharers, 2005).
This section presents the arguments for and against these approaches, with attention to their impact on organ donation rates and their broader implications for the transplantation system, the healthcare system, and society. The two models are addressed together because the arguments
supporting and opposing them are similar. They are referred to collectively as either reciprocity-driven approaches or preferred-access approaches.
Arguments for Preferred-Access Approaches
To evaluate these proposals, it is necessary to imagine that the U.S. Congress had embraced a national program changing the legal structure of the organ transplantation system. Under a pure reciprocity model, the only people legally eligible to receive transplanted organs would be those who have recorded a willingness to donate pursuant to whatever procedures are specified. Under a preferred-status approach, regulatory authorities would be directed to conduct the necessary rulemaking to give allocation points to people on the waiting list who have registered to be donors in a qualifying manner.
A pure reciprocity model would reduce the gap between the number of organs available and the number of people on the waiting list in two ways. It would shrink the waiting list by excluding individuals unwilling to donate organs, and it could potentially increase the supply of organs by providing a self-serving motive (potential eligibility for a transplant, if needed) to register as a donor to supplement the altruistic motive (Jarvis, 1995). What would happen to donor registration rates if such a plan were adopted? One article estimates that half of the people unwilling to donate their own organs are willing to receive an organ, so the number of people excluded might not be negligible (Kolber, 2003). However, if the policy were really in effect, it seems reasonable to assume that most people would register if they were aware of and understood the policy. In any case, these are critical assumptions that surveys have not addressed. The point is that it is simply not known whether the people who currently decline organ donation would become organ donors if a reciprocity-based legal structure was in place, accompanied by an aggressive public education program and full implementation. LifeSharers had roughly 3,300 members in 2005 and is thus far too small to provide useful data on the impact on donation rates of a public policy based solely on reciprocity. Moreover, testimonials on the LifeSharers website reveal that some of the members were already organ donors before joining LifeSharers and joined to implement a quid pro quo concept of justice, to increase their personal chances for obtaining an organ, or to reduce the size of the waiting list.
Aside from the aim of increasing the rate of organ donation, those who favor a reciprocity model often emphasize that such a model would promote justice in organ allocation. Given the shortage of organs, any allocation system must give preference to some potential recipients over others. Although medical need is a reasonable criterion to determine whether one is a potential recipient, it is not the sole criterion even under present policies.
Proponents of reciprocity-driven proposals argue that fairness justifies preferential treatment of those who are willing to donate their organs (Kolber, 2003; Sackner-Bernstein and Godin, 2004; Steinberg, 2004; Veatch, 2004; Nadel and Nadel, 2005). “Free riders,” that is, those who are willing to receive an organ but who are unwilling to donate their organs even after death, would either be excluded from the system (as in a pure reciprocity model) or given reduced priority (as in a preferred-status model). The argument is that willingness to donate one’s organs—in contrast to other personal characteristics, such as race or “social worth”—is a morally relevant difference and justifies preferential access to donated organs (Jarvis, 1995). In addition, advocates argue that a reciprocity-driven model would promote a strong sense of community. Creating a reciprocity-driven model of organ donation and allocation might also enhance the perception that citizens are all mutually dependent members of a community with rights that depend upon a willingness to meet the duties that people have to each other (Steinberg, 2004). Finally, some claim that reciprocity models would achieve the goal of reducing the waiting list for organ transplantation without some of the ethical drawbacks that many find in financial incentives, for example, the commodification of the body or the risk of exploiting the poor (Nadel and Nadel, 2005).
Although preferred-status models embrace the idea that a willingness to donate should carry moral weight in organ allocation, they are less radical than pure reciprocity models because they do not entirely exclude anyone from the system, treating willingness to donate as just one criterion for awarding allocation points. By the same token, however, the claim that implementing this approach would increase donation is correspondingly weaker. There is no direct evidence that giving registered donors preferred status would in fact increase the rates of organ donation. In the committee’s judgment, the argument for this approach seems to rest more on its signaling effect (emphasizing the importance of reciprocity) than on its incentive effect.
Arguments Against Preferential Access
The committee does not favor either of these models, largely because of insuperable practical problems in implementing them fairly. Even if it is assumed that an organ recovery and allocation system is properly grounded in reciprocity and that the adoption of either of the proposed approaches would increase the rates of organ donation, the committee is deeply concerned that they would not be fairly and carefully implemented and, as a result, that the adoption of either model would accentuate existing social inequalities and would disadvantage those who are uninformed about organ donation: most likely, poor people, recent immigrants, and the least-
educated individuals in society. To the extent that these models require individuals to be adequately informed about the option of donation and to have the opportunity to make their wishes known, they erect another potential barrier to health care, particularly among individuals who lack adequate access to the healthcare system (Siminoff and Leonard, 1999; Wigmore and Forsythe, 2004). It is worth noting that many people who believe that reciprocal obligation is an important moral underpinning of a system of organ donation nonetheless oppose proposals to replace the existing legal structure of allocation with one that either limits eligibility for transplantation to patients who have agreed to be donors or gives them legal priority in allocation (see, for example, Siegal and Bonnie, 2006).
The Information Problem
All proponents of preferred-access models concede that many people unregistered as donors—for example, children and adults who lack a decisional capacity—would nonetheless be entitled to equal access as potential recipients. Preferential access would be denied only to legally competent adults who had an opportunity to register and failed to do so. However, fair implementation of such a model would require aggressive public education so that everyone would be on an equal footing in deciding whether to register as a donor. People would need to be informed about the nature of organ donation and how to choose donation. A nationwide donor registry would need to be established and would need to rely unambiguously upon first-person (donor) consent. Without extensive education and a nationwide donor registry that is easily accessible to all citizens, a preferred-status system runs the risk of unfairly excluding people who have not been educated about donation or who lack easy access to donor registration (e.g., because they do not or cannot hold a driver’s license, which currently provides the most common opportunity to express donation wishes).
The Adverse Selection Problem
Any type of preferential access system based on a recorded willingness to donate presents what insurance experts call “adverse selection”; that is, that people who are most at risk for needing an organ will be disproportionately likely to sign up to be a donor. Should people be permitted to gain preferential access by agreeing to become donors only after they have discovered that they are likely to need an organ? If not, how should this rule be enforced? What about those who are not ill but who know that they are in a high-risk group? If people are permitted to register as potential donors after they already know that they are at higher risk of needing an organ, should they receive fewer allocation points than other people on the list
who registered before knowing that they were at higher risk? Should people with less desirable or extended-criteria organs receive a lower priority? In the committee’s view, there is really no way to substantially reduce the adverse selection problem without requiring everyone who signs up to be a donor to turn over their medical records and take a medical examination at the time of registration. Any significant degree of adverse selection erodes one of the strong moral arguments for reciprocity-driven approaches: the emphasis on a mutuality of interest and the effort to prevent free riding.
The Unfair Allocation Problem
Any type of preferential access based on donor registration introduces a criterion for organ allocation that is not related to medical need. Major institutional stakeholders such as UNOS and the American Medical Association have avoided the use of non-need-based criteria (Sanchez, 2003); for example, criteria that would give lower priority to patients with alcoholic cirrhosis, patients without dependents, or older patients. Although some factors unrelated to need, such as geography, are taken into account, the preeminent considerations relate to medical need and the predicted outcome. To the extent that reciprocity-based allocation embraces the idea that some patients merit a transplant (rather than need a transplant) more than others because they are willing to contribute their organs, these models would effect a significant change in the existing criteria for organ allocation. If society is going to step onto that slippery slope (Gillon, 1995), it is not clear why a willingness to contribute organs should be paramount. Why should not other contributions to society be taken into account?
Some of the people most in need of an organ will be people who have never been medically eligible to donate, so their willingness to donate would be an empty gesture. What should be done in such cases? Is it fair to exclude people who could never have been donors, that is, those who were free riders from birth or adulthood? Not surprisingly, reciprocity-driven proposals typically grant equal access to potential recipients who are medically ineligible to be donors, recognizing that the reciprocity principle requires some qualification. What, then, about people who have a strong emotional or religious concern about donating their own organs? Should religious objection to donation preclude equal access to organs when they are needed? What if the religious objector had made other major contributions to society? The reciprocity argument also fails to take into account the lack of trust that some people from historically disadvantaged groups have in the healthcare system. A person who has inadequate access to health care and fears that organ donor status might increase his or her chances of receiving suboptimal treatment in a life-threatening health situation may be reluctant to be an organ donor, even though he or she would like to receive an organ
if he or she needed one. It is understandable why UNOS would strongly prefer to anchor allocation in medical criteria.
CONCLUSIONS AND RECOMMENDATIONS
In evaluating the various arguments for and against incentives and in arriving at recommendations, the committee has drawn on the assumptions and principles summarized in Chapter 3. The committee’s reasoning, summarized below, serves both to explain and to limit the reach of its recommendations.
First, given the committee’s charge, the primary goal of any new incentive policies should be to increase the rates of organ donation rather than to serve other goals (for example, to enhance autonomy, express gratitude, improve the lot of the poor, or provide fair reimbursement). Other principles and values must come into play in delineating the ethical constraints on the use of incentives for donation, but they should not be decisive factors in the adoption of an incentives policy.
Second, as noted above, hard data on the impact of incentives are lacking, although individuals on both sides of the debate have provided some a priori and some empirical data. Accordingly, recommendations might need to be revisited should better data become available.
Third, obtaining reliable data to address these issues may be difficult. Although some have proposed an experimental approach to the use of incentives, others have expressed concerns about this approach. On the one hand, if financial incentives are ethically unacceptable in principle, then pilot testing should not be encouraged to determine whether they would actually increase the organ supply. On the other hand, if the concern is primarily consequentialist, then one is also concerned that pilot studies may set in motion a societal process that is difficult to reverse even after the pilot study itself is abandoned. For example, if people begin to view their organs as valuable commodities that should be purchased, then altruistic donation may be difficult to reinvigorate. As explained in Chapter 3, the committee believes that caution is warranted under these circumstances.
Fourth, in weighing arguments for and against incentives, the committee did not require either side to carry the burden of proof. Rather, it is noted that both sides of the debate have argued that the other side should shoulder the burden of proof: proponents because they would deviate from the status quo; opponents because they oppose policies that allegedly would save lives (Radcliffe-Richards et al., 1998).
Fifth, the committee’s deliberations have been influenced by the recent success of donation initiatives that do not rely upon donor incentives. The Organ Donation Breakthrough Collaboratives have demonstrated that the application of quality improvement methods to this process can signifi-
cantly increase the percentage of potential organ donations that are converted into actual donations (Chapter 4). Putting financial resources into this kind of improvement activity might well be a more cost-effective approach to increasing the organ supply than introducing financial incentives for donation and would avoid the controversial cultural issues that surround paying for human bodies. The collaboratives provide data suggesting that adopting best practices in the process of organ recovery and allocation could increase conversion rates from 50 percent to at least 60 percent; some institutions have achieved close to or greater than 75 percent conversion rates by following best practices models. Additionally, by implementing and expanding donation after circulatory determination of death protocols, it may be possible to greatly increase the number of available organs without the use of controversial incentives.
Finally, much remains to be done to remove disparities in the provision of health care and to build trust in the medical community. Although incentives might serve to increase donation rates, the committee believes that the actual need for incentives can be determined only after equal access to the transplantation system by all groups in the population is ensured and by building the trust of those groups in the medical community. Moreover, the premature provision of incentives could be viewed as a sign of disrespect and as an effort to manipulate donation in the face of perceived injustices.
Recommendation 8.1 Financial Incentives.
The use of financial incentives to increase the supply of transplantable organs from deceased individuals should not be promoted at this time. (The term “financial incentives” refers to direct cash payments as well as contributions toward funeral expenses or to a charity of choice.)
Recommendation 8.2 Preferential Access.
Individuals who have recorded a willingness to donate their organs after their death should not be given preferential status as potential recipients of organs. This recommendation does not imply opposition to the assignment to living donors of additional points for the allocation of organs should they subsequently need a transplant.
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