A central problem for organ transplantation is the discrepancy between the number of patients waiting for an organ and the number of organs available for transplantation.1 Couched as the problem of “organ shortage”, “organ scarcity”, “low organ supply” or an “unfulfilled organ demand”, this issue frequently forms the starting point for contributions to the ethical and political debate about organ donation.2 The German National Ethics Council, for example, describes organ shortage as a serious problem and states that “the legal provisions … limit the number of potential organ donors in Germany to a greater extent than in other countries.”3 Similarly, a recent statement by the Dutch Health Council on organ donation starts as follows: “The supply of organs available for transplantation following post-mortem donation falls well short of demand. The Netherlands is more seriously affected by this structural shortage than most European countries.”4

Against this background, an increasing number of voices have addressed the power of the market to create effective incentives and coordinate individual interests, thereby establishing the best possible balance of supply and demand. In consequence, what has been a taboo for many years is now officially worth being reconsidered: financial incentives and market models for organ procurement. A nearly overwhelming number of positions and arguments discussing the pros and cons of this issue have been suggested in the last 15 years.5 6 Many of them present the market model as morally permissible or demanded by the circumstances. Thus, Goodwin declares that “[a]ltruism cannot resolve the American organ demand problem”.7 And Taylor states that “there is a simple solution to this shortage of organs … to legalize current markets in human organs”.8 Peter Lawler, a member of the US President’s Bioethics Council, even states: “Not to use market forces to increase kidney supply … is pro-death. In this respect, market kidneys are … in fact pro-life.”9

This debate over commercialisation with respect to the human body represents a key trend in recent bioethics. In this paper, we reassess one of its central premises—the presumption of organ shortage. While the problem is often presented as an objective statistical fact that can be taken for granted, we will take a closer look at the underlying framework expressed in the common rhetoric of “scarcity”, “shortage” or “unfulfilled demand”. On the basis of theoretical considerations as well as a socioempirical examination of public attitudes, we will argue that this rhetoric has an economic subtext that imbues the debate with normative premises that have far-reaching social and ethical consequences and need to be made explicit and discussed.

THE LANGUAGE OF ECONOMICS AND THE DISCOURSE ON ORGAN DONATION

Combining the protection provided by the liberal principle of free choice with a utilitarian concept of social welfare, proponents of the commercialisation of organ donation suggest that the quantity of donor organs can and should be increased by providing financial incentives for organ donation. This implies that raising the “price” of human organs will motivate “producers” to supply more and thus fulfil the existing demand.

This approach draws on basic assumptions from economic theory. Modern economics describes market relations between the quantity of products, their price and the consumers’ behaviour in terms of supply and demand. The corresponding model of the Homo economicus involves three ideas: (1) individuals follow their preferences, (2) individuals act rationally to try to optimise benefit to themselves and (3) the idea of “private vices—public benefits”: when individuals act according to (1) and (2) an optimum collective welfare will result.10

From a theoretical point of view, however, it is disputable how far terms such as “producers”, “consumers” and “price” can be applied to the agents and interactions involved in organ transplantation. First, modern environmental economic insights let us question if organs are comparable to market products or raw natural resources such as land, water, space and so on.11 Furthermore, it is questionable whether potential organ donors see themselves as “suppliers” and whether patients with organ failure are in the position of consumers. Thus, whether the market will solve the organ shortage is an empirical question that depends on the validity of economic assumptions about choice and action within the field of organ transplantation.

There already seems to be socioempirical evidence against these assumptions. According to Haddow’s survey in Scotland, the public’s reaction to financial options for giving organs is rather lukewarm.12 The survey of Kranenburg and colleagues in the Dutch public showed that only 25% reacted positively to a system with financial compensation, while almost half were reluctant.13 However, these quantitative surveys cannot explain how the public and patients understand and evaluate the issues at stake. What subjective meanings are ascribed to organ shortage, organ donation and financial incentives, and what are their shared cultural backgrounds?14 To answer this question, an investigation of the symbolic and argumentative structure of public moralities is needed to evaluate the way common-sense values and norms interact with social experience and economic viewpoints.

METHOD OF DATA COLLECTION AND ANALYSIS

In order to explore this issue, we used a socioempirical research method, the focus group, a moderated group discussion with 8–10 participants.15 Although focus groups obviously cannot be considered representative in a strict, sociodemographic sense, they have been characterised as a sort of “test public” in so far as they can be used to simulate certain aspects of broader societal debates and to identify “public topoi” (recurring common-sense positions).16

Our analysis is based on eight focus groups with lay and affected people (persons who had had a transplant, were waiting for a transplant or had refused transplantation, along with relatives), conducted in Cyprus, Germany, the Netherlands and Sweden.i The selection was aimed at a rough cross section of regulatory and organisational frameworks of organ donation in Europe. To allow for a wide coverage of sociodemographic criteria, participants had been recruited using different strategies (flyers, advertisements, the snowball method). Affected people were approached with the support of medical centres, self-help groups and patients’ organisations. The overall number of responses was 85 in Germany, 71 in the Netherlands and 34 in Sweden (for Cyprus, no figures are available). On this basis, two focus groups were set up in each country, one with lay people and one with affected persons (34 men and 32 women in total). On the basis of a pre-questionnaire containing an informed consent sheet, the groups were composed to achieve gender balance and a high diversity of age and educational level.

In all countries, the focus groups were moderated by two facilitators following the same semistructured guidelines. These guidelines included (a) a future scenario of unlimited organ replacement, (b) a hypothetical case, (c) open questions about attitudes towards postmortem and living donations and (d) public policy. The specific topics of “organ scarcity” and “commercialisation” were not explicitly addressed. However, the participants themselves frequently referred to these topics—a fact that attests to their topicality and pervasiveness and underscores that the aspects addressed and the language used really came from within the groups rather than from input by the moderator. All discussions (lasting 1.5–2 hours) were recorded, transcribed, made anonymous and translated into English. The speaker codes used provide information about gender (Mr/Ms), group membership (aff/lay, affected person/lay person) and country (CYP, Cyprus; GER, Germany; NED, Netherlands; SWE, Sweden); initials of surnames were assigned arbitrarily.

Since we were exploring implied meanings, the focus of analysis was on broader rhetorical and argumentative contexts. Economic connotations usually cannot be ascribed to single words such as demand or supply, but rather to their use in economic “language games”—for example, adding up “supply” and “demand” (see below). In order to detect and analyse such broader contexts, we followed a procedure based on a combination of qualitative content analysis and grounded theory.17 18 It consisted of three steps. First, we coded the transcripts using Atlas.ti scientific software to assign a set of predefined categories to significant text passages. We carried out the coding independently of each other and exchanged and discussed the coded texts to reduce bias. We then identified the relevant arguments contained in the text passages and analysed their structure. On this basis, a typological classification was achieved. This procedure resulted in the main lines of argument, which we present in the following section.

EMPIRICAL RESULTS: PUBLIC PERSPECTIVES ON “ORGAN SHORTAGE”

The discrepancy between the need for and availability of donor organs constitutes a central topic in all the focus groups. Most participants are quite aware that “there is no balance now,” as “[t]he demand is much greater than the supply” (Ms A, SWElay). However, there is also awareness that this situation can be interpreted and evaluated in rather different ways:

… this thing with the supply is very important if you have a positive attitude towards transplantation, well, if you want it to be possible. If you are not positive, then the problem with this is, well, the balance between donors and receivers is so [far away] in their situation, one man’s trash is another man’s treasure. (Mr P, SWElay)

In the following sections, we explore these differences by concentrating on the three presumed features of the Homo economicus pointed out above.

What is a preference? Needs, interests, values

Throughout all focus groups, people referred to terms such as “demand”, “need” and “shortage” when talking about donor organs. In the affected groups, the term “need” often seemed to allude to an idea of basic needs related to survival. For some, such elementary needs constitute legitimate interests and therefore strong moral claims to organs and a corresponding moral responsibility on the side of the general public. Thus, an affected speaker expressed the view that “everybody, no matter how old he is, likes living and … therefore he should be given the chance … to receive a matching transplant” (Mr B, GERaff). In contrast to this natural-rights-like understanding of needs, however, several affected people reported that it was the medical system that first informed them that they “needed” transplantation. Sometimes, a graded conception of needs is expressed in which not only vital organs are suitable objects of transplantation, but “also … cornea, auditory ossicle, all those … small things, they are needed as well. They help prolong life for many people or make it much more worth living” (Mr B, GERaff).

In the lay groups, a different meaning of “need” was found. It alludes to a “neediness” that is not based on general moral claims but rather appeals to almsgiving out of individual compassion and charity. Many lay people believed that “you should be happy that you get a heart at all” (Mr D, NEDlay). They also saw “a big difference between being really very ill, that you really need it badly, or that you start replacing things in case of minor dysfunction” (Ms E, NEDlay). Some of them explicitly stated that they themselves would not want a donor organ, implying that the need does not constitute an unconditional entitlement, but is only one factor in a decision-making process, which can be weighed against other factors, such as religious beliefs or world views. Many lay participants also argued that patients may have a choice between living donations and organs donated from cadavers. Moreover, they were concerned that the “demand for living donors” could lead to a situation in which “you actually stimulate people to donate that kidney, healthy people” and state that “[i]t shouldn’t be heading that way.” (Mr F, NEDlay).

The maximisation of what? Increasing the supply or optimising allocation

The strategies that were considered to deal with the discrepancy between the need for and the availability of organs depended on the framing of this discrepancy. The affected people, mostly recipients, tended to describe the present situation as a shortage of donor organs. This implies an evaluation from the perspective of demand: the number of organs is assessed as too low, given the number of persons who “need” one. In so far as a moral claim to organs is assumed, this situation is taken to constitute a serious moral problem, because the legitimate interest in survival often cannot be met. In consequence, debates in the affected groups focused on proposals for increasing the overall number of donor organs:

… we should aim at a situation in Germany almost as it is the case with stored blood units … So that everybody who needs a heart, a kidney or lungs or something [can receive them] from those people who no longer have existence in the world because of death or only [live] because of life support machines … [and] contribute their organs in order to help others. (Mr G, GERaff)

Suggestions for increasing the number of donor organs depended on explanations for their “shortage”. In all affected groups, the prevalent explanation was the general public’s lack of knowledge. The public awareness of the problem was regarded as vague and distorted by rumours and irrational fears. Many thought the readiness to donate would grow if the public only knew how great the need really is. Consequently, “information is the clou” (Mr G, GERaff) for most of them, and educational measures and public campaigns constituted their major hope “in order to help change the mismatch between donors and recipients” (Mr H, GERaff). From this perspective focused primarily on demand, the general public often appeared only as an anonymous mass; even when patients were satisfied with the situation in their country, they never talked about people willing to give organs, but only about a “supply that is good now” (Mr I, SWEaff).

Many lay people, on the other hand, had “a problem with the word demand” (Ms J, GERlay). Rather, they tended to accept the current number of organs as a given fact. Thus, for them, organs can be replaced, as two participants of the Dutch lay group explained, “as long as there are organs available [to serve as replacements]—and that system at a certain point comes to an end” (Mr K, NEDlay) “—because there are not enough organs” (Mr D, NEDlay). In consequence, the discussions in the lay groups tended to be centred on the fair allocation of the available organs rather than on strategies for increasing the supply. Their debates on allocation criteria were more extensive and differentiated than those in the affected groups. They advocated approaches that consider the differences between individual cases and take into account medical considerations such as urgency or compatibility and also factors such as social status and age.

Private vices—public benefits? Buying, donating, recycling

Despite these differences, market models of organ procurement were unanimously rejected by lay and affected people. Corresponding scenarios were vehemently addressed as a “horror” (Mr M, GERlay). Arguments mentioned included the danger of exploitation of the poor and potential injustice with respect to allocation. At least in the field of organ transplantation, there was obviously not much trust in the balancing and optimising powers of the market; to the contrary, there was a widespread fear that private vices will add up to public vices rather than turn into public benefits.

Although the idea of donation was clearly preferred in this context, it was also regarded as problematic in two respects. First, it was subject to the criticism that in contrast to its altruistic implications, the current practice creates implicit moral bonds and liabilities on the side of the recipient that are hard to fulfil. Second, sheer altruism alone was viewed as an implausible motive for giving organs. Especially regarding living anonymous donation, the prevailing view was that this is something “hardly anyone would do for a complete stranger” (Ms X, GERlay).

At least with respect to postmortem donation, a third, somewhat intermediate, solution was offered. This view, which treats organs as a raw but scarce resource, shows a certain affinity to the model of recycling waste:

[W]hen I am dead, my body is no longer of any use to me—while for other people my body can still be of use. And maybe because of my body they can live again, or else die without it … I believe it is an important thing that when you have died, well, if your organs can still be of use to other people. (Ms N, NEDlay)

In accepting the factual amount of donor organs, this model implies the sustainable use of limited natural resources. Thus, many participants would regard it as “a waste, in principle, if you had an accident, and apart from that, you are still okay, and that you in principle could help another person” (Ms J, GERlay). And a participant from Cyprus would even “consider leaving a liver to decay in soil as unfair” (Ms O, CYPlay), given that a patient could still benefit from it. Nevertheless, some lay people feared that treating organ donations from cadavers as “trash” would entail a lack of piety that might impair their agreement to make a donation.

DISCUSSION AND CONCLUSIONS

Considering these findings, the connotations of the common terminology organ shortage appear neither self-evident nor unproblematic. It seems to be based on the situation formed from the point of views of demand, that is, of (former, potential or prospective) recipients that there is a demand-driven market for organs, and thus takes sides with the perspectives, interests and concerns of only one of the parties involved in organ donation. This one-sidedness narrows the ethical scope of debate: once the quantity of donor organs is identified as the central problem, the search for and acceptance of solutions is restricted to strategies aimed at increasing the available “supply”, such as financial incentives. A discussion of how to reduce the “demand” (by prevention) or to deal with the given amount (by fair allocation) is neglected. However, many lay people in our groups were very concerned with these problems. This is important, since there are few politically relevant statements that actually question the rhetoric of “shortage”. A staff background paper prepared for the American President’s Council on Bioethics stated in 2003 that “it is wrong to declare that the “organ shortage” is the “cause of death” for those who die waiting for organs … the cause of death … is not the shortage itself but the same diseases and frailties of human life that existed before organ transplantation was even possible”.19

A second result is consistent with the work of Waldby and Mitchell: the common rhetoric of donation, as well as the spread of economic language in the public discourse, excludes the normative option of perceiving and treating organs as “natural raw resources” that can be utilised in a sustainable way (pp88ff).5 The use of terms such as demand, supply and shortage suggests moral imperatives to establish markets and prices for organs despite the fact that many citizens and patients have great reservations about commercialisation. The idea of “altruistic donation”, on the other hand, refers to traditional ideas of altruistic behaviour, thus obscuring the reciprocal structure of the actual practice of organ donation, particularly as experienced by recipients. Consequently, both the language of the market and the vocabulary of donation produce metaphorical paradoxes in the field of organ donation.

Of course, our findings must be critically appraised in the light of the methods we used. The size and composition of our sample might have skewed the results. The affected persons selected were mostly organ recipients. Further research would be needed to show if other groups, such as persons on the waiting list, would express different perspectives. However, our research was not intended to allow broad generalisations, but rather to make manifest and analyse common-sense positions and arguments so as to explore the role of the economic subtext in lay peoples’ deliberations about organ donation. The qualitative methods we used proved most suitable for this exploratory purpose.

Our results emphasise the considerable relevance of perspectivism in the field of organ donation.20 Against this background, we conclude that the ethical scope of public discourse needs to be broadened: all participants should step back and explicate, reflect and justify their premises in order not to exclude legitimate perspectives and potential solutions from the start. After all, when we suspend the idea of “organ scarcity” for a moment and adopt the view expressed by our lay groups that the limits of legitimate transplantation are defined by the actual quantity of available organs, the whole situation appears in a completely different light. Being saved by a donor organ then constitutes an instance of good fortune that gives cause for substantial gratitude rather than an instance of an enforceable right that justifies a radical violation of common moral sense.