Organ transplantation raises difficult ethical questions aboutpeople’s claims to determine what happens to their bodies beforeand after death. What are these claims? What would it be to respectthem? How should they fit with the claims of organ donors’families or the needs of people whose own organs have failed? And thenhow should organs be allocated? Who should get priority and why? Aswith other topics in applied ethics, satisfactory answers requireknowing the relevant facts, in this case about organtransplantation.
In summary form, the following empirical claims about organtransplantation are widely accepted:
Organs are taken from the dead and the living. Each category raisesseparate problems and we begin with dead organ donors.
The dead are the major sources of organs for transplantation. For along time deceased donors came from those declared brain dead, thatis, those who have irreversibly lost their brain function. In recentyears, however, many donors have come from those who have died in thesense of circulatory death. Both donation after brain death anddonation after circulatory death invite the importantphilosophical—not just medical—question “what is itto be dead”? (See the entry onthe definition of death.)
Even though far more people die than require new organs, organs arescarce. Numerous factors affect the retrieval of organs from the dead.These include: the nature of people’s deaths (in only perhapsfewer than 1% of deaths can organs currently be taken, and countriesvary according to the number of strokes, car crashes, shootings, andother causes of death that lend themselves to retrieval); the numberof intensive care units (ICUs) (most donors die there and fewer ICUsmakes for fewer donors); the medical factors that determine whetherorgans are retrieved successfully; the logistical factors thatdetermine the efficient use of available organs; the extent of publicawareness of transplantation; and the ethical-legal rules for consentthat determine who is allowed to block or permit retrieval. Althoughmost of these factors do not raise philosophical questions, it isimportant to realize that the main factor that does—theethical-legal system for consent—is only one of many that affectretrieval rates, and nowhere near the most important at that. Oneshould also bear in mind that the variety of factors plusunreliability or incomparability in statistics about retrieval meanthat it is hard or impossible to have confidence in many of the causalclaims about how consent rules affect retrieval rates.
This section explains the rules for consent as they operate inpractice in most countries. It then outlines certain reform proposals,mentions the claims of the main affected parties, and, in the light ofthose claims, evaluates those reform proposals.
In nearly all countries with a transplantation program, the followingis a broadly accurate description of organ retrieval in practice,although different countries, and regions of countries, do differ innuanced ways, for instance in how the option of donation is presentedto families; and the nuances may affect retrieval rates (T.M.Wilkinson 2011).
The first point to make from this description is that nearly allcountries have, in practice, a “double veto” system. Evenif the family wants to donate, the deceased’s objection willveto retrieval. Even if the deceased agreed to donate, thefamily’s objection will veto retrieval. (The U.S. has partialexceptions discussed shortly.) The family’s veto is in manycountries, such as the U.S., the U.K., and most nations of continentalEurope, a creation of the medical profession. Doctors will not takeorgans from consenting dead people whose families object even thoughthe law permits retrieval. A lesson in method follows: when describingthe practice of organ retrieval, looking at the law alone isinadequate.
A vital second point is that the consent of the deceased is notrequired before organs may be taken. (Japan was the last majorexception and permitted retrieval without the deceased’s consent from2010 – see the link to the Japan Organ Transplant Network in theOther Internet Resources section below.) When the deceased has notrefused, the family’s agreement is enough to permitretrieval.
The persistent scarcity of organs has given rise to several proposalsto reform the system for consent. The main ones are:
(1)–(4) are discussed below; for (5), see the entry onthe sale of human organs. Before evaluating the proposals, we describe the claims of the mainaffected parties. In determining what the rules for retrieval ought tobe, three main claims are in play. These are the claims of thedeceased, the deceased’s family, and potential recipients oforgans. Transplant professionals have claims too, which are probablybest thought of as matters of professional conscience, but these arenot discussed further here.
The dead. The “claims of the dead over theirbodies” is almost invariably shorthand for “the claims ofthe living over their post-mortem bodies”, and that is how itwill be understood here. While it is widely accepted that livingpeople have strong claims over their own bodies, especially when itcomes to vetoing invasions of their bodily integrity, it is much lesswidely accepted that the dead have such claims. Among the views thatthe dead have claims, we may distinguish between those which hold thatevents after death can harm the interests of the formerly-living andthose which hold that it is only the fears and concerns of the livingthat have weight. Thus if it is asked why we should attach weight to aperson’s refusal of organ retrieval, the first sort of view maysay “because to take the organ of a person who refused damageshis interest” and the second sort may say “because theanticipation of retrieval against his wishes will be bad for theliving person”. The first sort of view is the subject ofposthumous interests (see the entry ondeath).
Even if we accept that people may have posthumous interests, thecontent of those interests will often be unknown or indeterminate.Many people do not think about organ donation, which is quitereasonable given the low chance that they will die in such a way as topermit organ retrieval. In cases where they have not thought or notrevealed their thoughts, it seems plausible to say that they have nointerest to be taken into account in deciding whether to proceed withretrieval.
In some cases, the claims of the deceased will be in conflict withthose of their families and/or the claims of potential recipients. Thequestion arises of how to weigh the claims of the deceased. Somewriters accept that the deceased can have posthumous interests, butbelieve them to be of little weight, particularly compared with theneeds for organs of those with organ failure (Harris 2002, 2003). Theymay believe that people are not affected by their posthumous interestsbeing set back or they may think the fear of retrieval is of littleweight. In their view, any roughly consequentialist calculation wouldjustify setting aside the objections of the deceased to organretrieval. Other writers argue that if we accept posthumous interestsand accept that people have strong claims over their bodies whilealive, we have grounds to attribute rights to the living over theirpost-mortem bodies (T.M. Wilkinson 2011). Such a view needs to explainhow posthumous rights are possible, since some writers in politicaland legal theory believe that rights could not protect posthumousinterests for technical reasons to do with the nature of rights(Steiner 1994; Fabre 2008).
The family. If one accepts that the deceased have a claim,then families may acquire a claim by transfer. That is, the deceasedmay delegate decision-making power to their families, as is possiblein some jurisdictions. Some authors have even suggested that theorgans of the dead should be treated as something akin to inheritableproperty (Voo and Holm 2014). Acquiring a claim by transfer however isno more controversial than the deceased’s having a claim in thefirst place. What is the subject of dispute is whether the familyshould have a claim in their own right which could be set against theclaims of the deceased or potential recipients.
Some argue for family decision-making on cultural grounds (Fan andWang 2019). For them, giving priority to the deceased is unacceptablyindividualist either in all cases or in cases where individualism isculturally abnormal (Boddington 1998). Among the difficulties for suchviews is to explain why, if individualism is mistaken, the decisionabout retrieval should be made by individual families rather than inthe interests of the wider community, which may well require takingorgans against the families’ wishes so as to meet the needs ofpotential recipients.
If families were overridden, it is reasonable to suppose that theywould suffer extra distress: that is, even more distress than theywould already be experiencing upon the often untimely andunanticipated death of the relative. Few writers deny that avoidingdistress would be a good reason, although some believe (without muchevidence) that a norm of taking organs and overriding families’opposition would come to be accepted (Harris 2003). What iscontroversial is how strong a claim the family would acquire not to bedistressed.
Finally, families are not monolithic, and sometimes they disagreeamong themselves about whether to endorse organ retrieval. Howinternal disagreement affects the families is not widelydiscussed.
Potential recipients. As was said at the start of this entry,potential recipients stand to gain a great deal from receiving anorgan in terms of both the quantity and quality of their lives. Theyare also badly off, in a medical sense, in that they suffer from organfailure. Utilitarian, prioritarian, and egalitarian views of justiceand benevolence would, therefore, give considerable weight to theneeds of potential recipients.
We now turn to consider the proposals for reform listed above.
According to some, an important cause of family refusal of organretrieval is uncertainty about the wishes of the deceased. Familiesthat do not know what their relatives wanted often default to“no” (den Hartogh 2008a). To avoid the default, somewriters would encourage people to decide about donation in a wayothers will know, for instance by paying them (De Wispelaere andStirton 2010) and others suggest mandating choice by, for instance,withholding driving licenses from those who do not choose. Thesuggestion is not, or not in all cases, that people be steered intoagreeing to donate or penalized if they refuse. It is that people besteered to make clear choices, yes or no.
Some ethical questions are raised by penalizing people for notchoosing or for introducing monetary encouragement. It may be repliedthat no one is pressured to donate, as opposed to choose; that thepenalties or encouragement are slight; and that transplants are ofsuch value to the needy that any ethical objections are easilyoverridden. The real difficulty is that mandated choice may notincrease retrieval rates by much. In some places where it has beentried (such as the U.S. states of Virginia and Texas), people who arepressured to choose themselves default to “no” (denHartogh 2008a). In New Zealand, where one must choose as a conditionof getting a driving license, the choice is often ignored by intensivecare doctors and families because it does not seem like a genuinedecision.
Families usually have at least thede facto power to vetoretrieval from the deceased, even those who adamantly wanted to donatetheir organs. Does this power not give excessive weight to theinterests of families as against the interests of both the deceasedand potential recipients (Liberman 2015; Zambrano 2017)?
As it happens, it appears that families rarely override thedonors’ known wishes. Furthermore, it seems unlikely that manypeople would want to donate no matter how upset their families were,so allowing families to veto retrieval is unlikely to be against theall-things-considered wishes of many of the deceased.
In any case, transplant professionals have a practical reason not tooverride the family: they fear bad publicity. One version of theirargument is this:
there are already urban myths about people having their deathshastened so as to make their organs available; few people understandbrain-death; donation would fall if families publicly claimed thattheir views were overridden and their relatives were not dead; thusending the family veto would reduce the supply of organs, not increaseit.
If the practical argument is correct, it is understandable whyfamilies have a medically-created power of veto. Moreover, it is hardto see that the veto is contrary to the claims of the deceased. Whilethe deceased may have a claim to block retrieval, no one has a claimthat other people use his or her organs. If the veto is in theinterests of potential recipients, doctors may refuse the offer oforgans by the deceased without infringing on the deceased’sclaim (T.M. Wilkinson 2007a).
Some states in the U.S. have implemented “first person”consent laws that mandate overriding families in cases where thedeceased has ticked the “donate” box or its equivalent ona form. It is unclear how far such laws are upheld. In principle, itmight be possible to get some data on the effect of overridingfamilies on the organ supply, thus testing the practical argument inthe previous paragraphs. Ethically, first person consent laws arguablydo not respect the wishes of the deceased, at least in cases where thedeceased donors who ticked the box did not fully grasp that theirfamilies’ wishes would be overridden.
This proposal favors what is variously called “opt-out” or“presumed consent”. A “hard” version wouldtake organs even when the deceased’s family objected (with allthe problems mentioned in the previous sub-section); a“soft” version would allow the family to veto retrieval.The leading argument for opt-out claims that many people want todonate but through inertia do not get round to opting in. In anopt-out system, inertia would prevent them opting out so their organscould be taken and, since most people do want to donate, the deceasedwould be more likely to get what they want and more organs would beavailable (Thaler and Sunstein 2008).
The proposal envisages taking organs without the explicit consent ofthe deceased. One may object that people’s rights over theirbodies establish a duty of non-interference which can be lifted onlywith the consent of the rightholder (Kluge 2000). A differentobjection points out that taking organs without consent wouldsometimes be against the wishes of the deceased; and while not takingwould be against the wishes of the deceased who had wanted to donate,taking in error is a worse mistake than not taking in error, becausepeople have a right not to have their organs taken but no right tohave their organs taken (Veatch and Ross 2015; for criticismspecifically of their views see den Hartogh 2019). As against theseviews, we must dispose of the bodies of the dead in some way, even ifnot consented to; and we give unconsented medical treatment to theunconscious even though some would have opposed treatment (Gill 2004;T.M. Wilkinson 2011).
Is it right to use the bodies of the deceased without either theirconsent or knowing that they had wanted the use? The question is animportant and difficult one. It is very important to note, however,that this question is raised by virtually all existing organprocurement systems To restate:all systems allow organs to betaken without the deceased’s consent. It follows that thesimple inertia argument for shifting defaults is flawed. There is nodefault of non-retrieval in the absence of the deceased’sconsent. Other arguments for variations of opting out turn on theempirical question of effects on retrieval. Since many differentfactors affect retrieval rates, it is often hard to be confident aboutthe difference that changes to consent would make.
The idea of conscription is to take organs in all suitable cases evenwhen the deceased or family objected (except, perhaps, in cases ofconscientious objection). Unlike the other reform proposals,conscription seems to have little political support. Nonetheless, somepowerful philosophical arguments can be given for it. One argument,mentioned above, compares the strength of the interests of thedeceased, families, and potential recipients, and claims that the needfor transplants of those with organ failure is much greater than theneeds of the deceased or their families (Kamm 1993; Harris 2002,2003). Another argument draws an analogy with the relief of poverty.Many people think the state may use its coercive powers to transfermaterial resources from those with a surplus to those with little. Inother words, we think that people have welfare rights to resources.One way to fulfill those rights is to tax the estates of the deceased.By parity of reasoning, because organs are also resources and nolonger of use to the dead, they too should be coercively transferredto fulfill the welfare rights of those with organ failure (Fabre2006).
Conscription may be politically infeasible or be subject to practicalobjections. But what of principled ethical objections? One could pointto the distress that families would suffer (Brazier 2002), but what ofthe distress of the families of people who die for want of an organ?One could point to the interests of the deceased, but the argumentsabove need not deny that the deceased have interests; they claim thatthose interests are outweighed. One could claim that the deceased haverights that protect their interests and deny that potential recipientshave rights to organs. Even if the deceased have rights and potentialrecipients do not, it would have to be shown that the rights of thedeceased are not outweighed by the needs of those with organfailure.
As noted above, many factors affect the supply of organs andtransplantation systems have made clinical, logistical, and marketingattempts to increase supply. Some of these raise ethical questions.Consider preparing for organ retrieval patients who are not yet dead,for example by ventilating patients thought likely to die in the nearfuture. If the preparatory measures are permitted, more donors wouldbecome available than if they are not. But these measures would not bedone for the therapeutic benefit of the patient. They would becontrary to a duty to act only in the best interests of the patient,at least when “best interests” are understood as onlymedical interests. On the other hand, if “best interests”were understood more broadly, as explained in2.1 below, then in some cases, such as where the patient had agreed todonate, the preparatory measures might be in the patient’snon-medical interests. In any case, the measures need not be againstthe patient’s medical interests.
As for social marketing (or “nudging”) to try to increaseconsent rates, these might target potential donors, as with campaignsto increase the number on a donor registry, or the families of thosewho have died, say by using specially trained people to ask theirconsent. In some cases, these ideas invite the question of whetherthey involve manipulation and whether any consent obtained is valid(Sharif and Moorlock 2018; T.M. Wilkinson 2011). They also raise againthe question of how much it would matter if consent were not valid ifthe supply of organs increased.
The successful early transplants used organs taken from living donors.For a long time the hope was that, when technical problems wereovercome, enough organs would be supplied by dead donors (Price 2009).That way, healthy living people need not undergo the risk anddiscomfort of non-therapeutic organ retrieval. That hope however wasfalse and the persistent shortage of donors has led to the increasinguse of living donors. It has been reported that 37,360 live donorkidney transplants occurred in 2019 (Global Observatory on Donation and Transplantation), over 37% of the global total. For livers, the global total fromliving donors was 7,610, over 21% of the total. Rules governing livingdonation have generally become more permissive, allowing donationsfrom close genetic relatives, then spouses, then partners and friends,and, in some jurisdictions, even strangers.
The primary ethical question raised by living donation is to do withthe risk of having an organ taken. Having an organ taken imposes risksof death, disease, and discomfort from trauma, infection, the use of ageneral anaesthetic, and the loss of all or part of an organ (althoughthe liver will usually regenerate, replacing the part removed). Theserisks are not negligible. However, the risk of death is not enormous.Focusing on the kidney, the most frequently donated organ and thesafest to take from live donors, it has been estimated that the riskof death from kidney retrieval is 1/3000. There appears to be nodifference between healthy screened living kidney donors and thegeneral population in long-term survival and the risk of kidneyfailure. (Ibrahim et al. 2009). That said, the general population isless healthy on average than the healthy screened living donors, whodo in fact undergo some extra risk of long-term renal failure as aresult of one kidney being removed (Grams et al. 2016).
Under what conditions, if any, is it permissible to impose such a riskon someone who will receive no therapeutic benefit? For competentpeople, it is overwhelmingly accepted that their valid consent is anecessary condition of morally permissible retrieval. (A very fewwriters disagree, e.g., Rakowski 1991 and, less clearly, Fabre 2006).But even if consent is necessary, it may not be sufficient, and afurther question is how much risk it is permissible to impose even onthose who consent. Living donor transplantation also raises importantquestions about the validity of consent and about whether organs mayever be taken from healthy non-competent people, such as children.
Medical ethics traditionally instructs clinicians not to harm people.Taking organs from healthy people does seem to harm them, so livingdonor transplantation appears contrary to traditional medical ethics.One reply is to say that the “do no harm” rule is a relicof the medical profession’s paternalism; if people want todonate their organs and know what they are doing, why stop them(Veatch and Ross 2015)? This reply raises the difficult problem,discussed below, of how far consent justifies harm. Another reply isto say that taking organs from willing living donors may not beall-things-considered harmful to them (Spital 2004). This replyusually draws on one of the following normative views: (a) that livingdonation is only permissible when we expect the donor not to beharmed; or (b) that it is only permissible when we expect the donor tobenefit (in both cases, all things considered, taking account of awider range of factors than just physical wellbeing) (Williams2018).
Suppose a person were prevented from donating an organ. On the onehand, the person would avoid the risks of physical harm. But, on theother, the person may suffer what are, in the medical literature,called “psychosocial harms”. These could includeloneliness from losing a relative, having to act as caregiver to aperson with organ failure, and survivor guilt. In philosophical terms,a person may also suffer vicarious harm. People whose welfare isintertwined with others suffer a loss when the other person does(Feinberg 1984; Raz 1986). Quite possibly, then, a person who donatesmay not suffer harm all-things-considered, that is, when all thedifferent instances of harm are weighed up.
The “do no harm” argument against living donation is notwidely accepted—that is why living donation proceeds apace.Nonetheless, even if the physical harm can be outweighed by the needto avoid other harms, or by consent, or both, one may think that as amatter of policy living donation should be discouraged. One fear isthat increasing the use of living donors relieves the pressure to findways to get more organs from other sources, notably the deceased.
Assuming consent is ethically necessary before taking organs fromliving competent people, questions arise about what makes consentvalid. The usual answer in medical ethics is that consent must be free(voluntary), sufficiently informed, and made by someone with thecapacity (competence) to consent. Thus, in the context of livingdonation, people must know what living donation involves, includingthe risks to them and the chances of success for the recipient, theymust be able to decide freely whether to donate, and they must becompetent to do so. (See the entry oninformed consent.)
Can people freely give consent when considering whether to donate to aclose relative? It may be thought that consent in such a case issuspect because potential donors would be: (1) desperate to save theirrelatives (2) subject to a feeling of moral obligation or (3) subjectto family pressure. The first two reasons are not good ones. Peoplegive valid consent in other desperate circumstances, for instance to alifesaving operation, and acting out of a reasonable sense of moralobligation is a way of exercising one’s freedom rather than aconstraint upon it (we consider below unusual senses of obligation inthe context of religious stranger donation) (Radcliffe-Richards 2006;T.M. Wilkinson and Moore 1997).
Family pressure is different. Family pressure may take the form ofcredible threats of violence, in which case the potential donor iscoerced and any consent invalid. Family pressure may be felt as a formof moral obligation on the part of the donor, in which case (seeabove) consent would not be made invalid for that reason. Somewhatharder to think through is family pressure that consists of theimplicit threat of ostracism. On the one hand, that pressure may bevery effective. On the other, it works by family members withdrawingtheir goodwill, something people are generally entitled to do. Someviews of coercion and valid consent imply that consent to avoidostracism would be valid (e.g., Nozick 1974); others do not (e.g.,Cohen 1988). As it happens, transplanters will often furnish reluctantdonors with “white lies” to enable them to avoid donatingwhile retaining the appearance of honour. For instance, reluctantdonors may be told to say they are clinically unsuitable on anatomicalgrounds. Whether “white lies” are mandatory or evenpermissible depends partly on resolving the question of when familypressure undercuts valid consent (den Hartogh 2008b).
Many living donor programs use extensive psychosocial screening aswell as a lengthy consent process (Price 2000). Potential donors arescreened for physical health, which is largely uncontroversial, butthey are also screened for their motivations. The typical advice is toscreen for excessive sense of duty, undue influence, unconsciousinternal neurotic influences, and abnormal emotional involvement.Screening of this nature is more controversial since it involvesmaking difficult judgments about what counts as excessive in a senseof duty, undue in influence, and abnormal in emotional involvement,and it requires spotting neurotic influences. At least in the past,some critics have thought that transplant professionals have overusedtheir power to refuse people as donors (MacFarquhar 2009).
To take one example, consider whether a member of a religious sect,such as the Jesus Christians, should be allowed to donate to astranger. It may be thought that such a person could not be givingvalid consent, perhaps because of what a sect has done (the“brainwashing” worry) or because of some psychologicalvulnerability. However, it is often difficult to decide whether a wayof influencing someone is illegitimate or whether motivations andbeliefs are signs of mental illness (see entry onmental disorder).
Assuming a potential donor would give valid consent, how far wouldthat justify retrieval of organs? The “do no harm” ruleimplies that people should not be harmed even with their consentalthough, as was said earlier, some living organ donation may not harmthe donor all-things-considered. Suppose a man wanted to donate hissecond kidney to his second son, having already donated a kidney toanother son, thus paying the price of a life on dialysis. Suppose aparent wanted to donate her heart to her child, thus causing her owndeath. Would transplant teams act wrongly if they took organs in suchcases? And—what is a separate question—should they beallowed to?
It cannot be assumed that, in these desperate cases, the parents wouldbe all-things-considered harmed by retrieval. Whether they are woulddepend on how the correct specification of harm handles vicariousharms and psychosocial harms. Perhaps a parent could be better offdead than to have to live without her child (which is not to say thather reason to donate is self-interest).
Suppose, though, that genuinely consensual organ retrieval wouldall-things-considered harm the donor. One way to try to decide whenretrieval should nonetheless be permitted is to compare the values ofautonomy with well-being. The question would then become an aspect offamiliar debates about paternalism and the limits of consent. Livingdonation does have the unusual twist that, if one were to preventdonation, one would prevent an act of considerable value to a badlyoff person, the potential recipient. Moreover, to prevent livingdonation would be dissimilar to many acts of state paternalism, suchas mandatory wearing of seat belts or the prohibition of certaindrugs, in that donating an organ would not generally be the result ofinattention, weak-will, addiction, or excessive short-sightedness.Because of its value to the recipient and because donors’choices are not obviously flawed, living donation of the sorts thatactually take place should be allowed and seems ethicallypermissible.
What about organ donation that goes beyond what is currentlypermitted, such as the donation of the second kidney or donation of anorgan necessary for life? Liberal democracies do not generally allowconsent to be a defense to bodily harm at or well below the level ofdeath (Price 2000), but should they? The answer turns in part on howfar third parties—transplant teams in this case—mayinflict harms on those who genuinely give autonomous consent or, toput it another way, the extent to which autonomous people can waivetheir rights of bodily integrity. But policy considerations are alsorelevant. Can one be sure that consent is genuine? Would some peoplebe forced into consenting in a way that a screening process would failto detect? If so, how much weight should be attached to cases whereorgans are taken without genuine consent? These questions arise forliving donation in general, but the errors are worse in cases wheresevere harm or death is the certain consequence of donation. (Thequestions also arise in the debates about whether voluntary slavery oreuthanasia should be permitted (Feinberg 1986)).
Although rules and practices governing living donation have generallybecome more permissive in most respects, they have become stricter inthe case of incompetent donors (Price 2000). Only six living kidneydonations by minors were performed between 2000 and 2015 in the U.S.,for example. Additionally, in the U.S., just 20 minors have donated aliver lobe or segment since 1987. In Europe, only three cases ofliving kidney donation by minors have been reported, all involvingadolescents and occurring in the U.K. prior to 2006 (Van Assche etal. 2016).
As the discussion above of psychosocial screening implies, competenceis not always easily determined, but let us assume in this sectionthat we are consideringclearly incompetent donors, namelyrelatively young children and people with severe mental disabilitiesor illnesses.
If valid consent were a necessary condition of ethically permissibleorgan retrieval from the living, then retrieval from incompetentdonors would be wrong. However, it is not clear why consent should bea necessary condition in all cases rather than only in those caseswhere people are capable of giving it.
Several arguments have been given for permitting retrieval fromincompetent people. Utilitarian arguments appear to permit retrievalbecause the donor loses less than the recipient gains. On the face ofit, however, that argument would support organ conscription fromliving competent people too. Some people have argued in specific casesthat the person would have wanted to donate, thus using the idea ofsubstituted judgment familiar in other cases of deciding forincompetent patients. However, substituted judgment is misapplied incases where the person is not, and never has been, competent (Buchananand Brock 1990). More plausibly, it may be thought that, at least insome cases, incompetent donors are not harmed by donating an organ. Ifa child’s donation would save the life of a sibling with organfailure, the donor may gain in the psychosocial and vicarious sensesdescribed above in the discussion of the “do no harm”rule. Donors may be no worse off for donating, in which case organretrieval would not infringe the “do no harm” rule (T.M.Wilkinson 2011).
Even if organ retrieval from an incompetent donor were ethicallypermissible in a given case, it may be that policy considerations,such as the risk of abuse, would justify an outright ban. Somewriters, though, believe that legal safeguards would be enough toprotect incompetent donors from abuse (Munson 2002).
The scarcity of organs creates an allocation problem. A great deal hasbeen written in philosophy on the principles of the allocation ofscarce resources, although not much on the allocation of organsspecifically (see the entries ondistributive justice;equality;justice and access to health care). Unsurprisingly, many of the principles cited in officialtransplantation allocation documents are familiar (seeOther Internet Resources: TSANZ 2014; NHSBT 2013). These principles include allocating to thosewho would benefit the most (a proxy for utility), to those who are thesickest (a proxy for helping the worst off), to those whose medicalcondition will deteriorate the soonest (urgency), and to those whohave been waiting the longest (often linked to equity). Officialdocuments also stress principles of non-discrimination, which aretaken to exclude allocating according to judgments of social worth, aswell as race, sex, religion etc. In practice, the principles conflict;the person waiting the longest may not be the one who would gain themost from a transplant, for example. So official allocation protocolsalso have to say how the conflict between principles should beresolved. (For a philosophical discussion of the principles and theirapplication to organ allocation see Kamm 1993.)
This entry does not provide a full account of allocation principlesfor organs. Rather, it aims to do three specific things. First, itexplains some of the features of allocation of organs that need to betaken into account when applying basic principles. This section drawsto the attention of philosophers the real-world complexity of applyingabstract principles of allocation. Second, it discusses the problemsof responsibility for condition and social value. These problems areboth ethically interesting and, while not unique to organ allocation,are more poignant than for other scarce resources because they oftencannot be avoided just by making more money available. Third, itdescribes some transplantation-specific cases of the interactionbetween allocation rules and the number of organs retrieved fortransplantation. These cases raise doubts about the coherence of someactually existing allocation practices.
The allocation of organs is certainly not just a medical problem to besolved with medical expertise (Veatch and Ross 2015). The principlesthat apply to allocation are quintessentially ethical principles.However, applying those principles correctly to produce final answersas to who receives organs does require medical knowledge and muchother knowledge besides. To see the point, imagine that we have todesign an organ allocation scheme.
Suppose we start with first-best principles, such as allocationaccording to need, or urgency, or benefit, or equity, or some mix ofthese principles based on some judgment of their relative weight.Clearly, applying these principles requires considering what organsdo. Organs differ in many ways that matter to allocation, such as
alternative treatments to transplantation, the ability to stratifyrisk, the different factors that affect patient and/or graft survival,and differences in the interactions between donor graft and recipientson outcomes. (NHSBT 2013, p. 8)
To explain just one of these factors, nearly all patients in richcountries whose kidneys have failed have the alternative of dialysis,whereas most of those with acute liver failure have no alternative totransplantation but death. Liver allocation, to a much greater extentthan kidney allocation, must thus make some judgment about theimportance of saving lives immediately compared with, for instance,improving quality or extending lifespan.
Next, the application of the principles ought to range across all thestages of transplantation. Details vary from place to place and organto organ but in general the pathway to transplantation can be thoughtof as having these steps: being referred for assessment; beingassessed and then listed; and receiving an organ once listed. Peoplemay be halted at each step, perhaps for medical reasons, perhapsbecause they cannot pay (the so-called “green screen”) orbecause the public system will not pay. Principles need to range overall steps. For instance, scrupulous fairness to those on a waitinglist may obscure injustice in access to the list.
Implementing first-best principles can have important secondaryconsequences. To take one example, the scheme the U.S. introduced in1989 to allocate kidneys increased the weighting for immune systemcompatibility and the effect was to reduce the proportion ofAfrican-Americans transplanted (Elster 1992: ch. 5). Many thought theresult inequitable because of the disparate impact even though thedifference was not due to overt discrimination (see the entry onjustice, inequality, and health).
In addition, a scheme must take account of procedural values such astransparency, non-arbitrariness, and public deliberation (Miller 1999,ch.5). For instance, we may think that time spent waiting on a list isonly a rough proxy for fairness. Perhaps someone entered a list latebecause of the difficulties in finding the time and resources tocomplete the requirements for listing; in perfect fairness that personshould not be disadvantaged as a result. And yet time waiting is avisible and checkable criterion, whereas taking account of diversesocial and economic circumstances would be procedurally fraught whenit comes to ordering a priority list.
Finally, allocation must take account of incentives in two distinctways. It must consider how the scheme would be operated. The idealapplication of first-best principles would require considerableflexibility and discretion. Fixed rules or algorithms inevitably failto capture all the relevant information. And yet flexibility anddiscretion are open to gaming by doctors and patients, for instance inexaggerating the urgency of transplanting a patient. Thus incentiveeffects may make an ideal method sub-ideal in practice.
Allocation must also consider the incentive effects of an allocationscheme on the size of the donor pool.
This topic is discussed below.
Two other specific allocation questions are:
Some people increase their chances of needing a transplant organ byleading what they know to be unhealthy lifestyles. Many of those whosmoke, or drink alcohol excessively, or eat too much know that theyare acting unhealthily (whether or not they know that smokingincreases the risks of heart and lung failure, that drinking increasesthe risk of liver failure, and that obesity increases the risk ofkidney and pancreas failure). It has been suggested that such peopleforfeit or weaken their claims to medical treatment (Brown 2013; Buyx2008; Smart 1994; Walker 2010).
There is one “non-ethical” argument for this view, calledthe Medical Argument. According to this:
… patients with self-inflicted illness … should havelower priority in access to health care because they are more likelyto experience poor medical outcomes. (Sharkley and Gillam 2010:661)
On the factual premise, it seems false that as a class those with“self-inflicted” illness would do so badly they should bedeprioritized (Munson 2002), although transplant systems often do tryto screen out those who would continue to act in ways that jeopardizetheir new organs. In any case, the Medical Argument is essentiallyjust an application of more general cost-effectiveness criteria andnot something that requires a special ethical justification. Thearguments considered below, in contrast, are ones which claim that(for example) heavy drinkers and smokers should have lower priorityaccess to organseven if they are no more likely than othersto experience poor transplant outcomes. There are three main ethicalarguments for this claim, two of which are clearly quite weak; athird, the Restoration Argument, is worth taking more seriously.
The first argument concernsincentives. It says that if (forexample) we refuse to provide heavy drinkers with liver transplantsthen this will discourage irresponsible drinking. Similar things aresaid about overeating and obesity.
The argument however is problematic. To continue with alcohol, wouldorgan allocation policy really make much difference to people’sdrinking-behavior? Some reasons for thinking not include:
Another challenge for the incentives approach is that if the rationalefor deprioritising heavy drinkers, say, is simply incentivisation thenthere is no reason to restrict these measures to cases of organfailure. Why not instead remove their driving licenses, or theiraccess to non-urgent healthcare, or subject them to punitive rates oftax? Such measures could all beincentives to stop drinkingand would surely be more effective—not least because theireffects would be felt straightaway, rather than many years down theline.
The next argument suggests that heavy drinkers and smokers should bedeprioritised on transplant waiting lists as a punishment forwrongdoing. There are several reasons to reject such a position:
A version of objection (c) applies to an opposite policy proposal:thathigher priority should be given to patients withhigh social value. This “social value” couldeither be instrumental (doctors, nurses, parents of young childrenperhaps) or moral (prioritising the virtuous). The fundamentalobjection to rewarding social value is that it infringes a principleof equal treatment but, putting that aside, it has the practical andfairness problems of the punishment proposal. How is social value tobe determined and then how is it to be applied in a timely andcost-effective manner? And, given the potentially dire consequences ofbeing assigned low social value (which could in practice be a“death sentence”), procedurally it seems reasonable toexpect something akin to a court hearing. A version of allocatingaccording to perceived social value (among other criteria) was triedin Seattle in the 1960s in allocating very scarce dialysis (Alexander1962). The result seems to have removed any enthusiasm amongtransplant systems for trying it again.
Perhaps one exception to this is giving higher priority to frontlinehealthcare workers in situations where such workers are themselves ascarce resource, and where therefore there would be fewer transplantsoverall if sick healthcare workers were not prioritised. Thejustification here is that whereas many other “socialvalue” based allocation decisions are zero-sum games,prioritising healthcare workers could instead increase the totalnumber of available transplants. This argument has some merit but isnot fundamentally so much about social valueper se as aboutthe pragmatics of maximising lives saved. Thus, social valuenotwithstanding, if the healthcare labor market was oversupplied anddoctors and nurses could easily be replaced then this pragmaticargument would not apply. Conversely, this pragmatic argument couldapply toany shortage profession: e.g. in a situation where,because of a shortage of Human Resources consultants in the healthsector, fewer operations are taking place than would otherwise be thecase.
The most promising argument in favor of deprioritising those with“unhealthy” lifestyles is the Restoration Argument, whichgoes as follows (Harris 1985; Smart 1994; S. Wilkinson 1999).
One of the most attractive features of this argument is that itgrounds the deprioritisation of those with unhealthy lifestyles not invalue judgments about their lifestyles, but rather in a more neutralset of concerns about preventing harm to innocent third parties. Thusthis argument could apply regardless of whether the risk-takingbehavior in question is virtuous or vicious.
Even this argument faces difficulties though. One is that risk-takingmay not generate additional healthcare costs or demand for organs.Indeed, some kinds of risk-taking behavior (motor sports perhaps)could even increase the supply of high-quality cadaveric organsavailable for transplant.
S. Wilkinson (1999) takes this fact as a point of departure for adeeper critique of the Restoration Argument. He claims that, if itturned out (as is possible in many European countries) that smokerscost the stateless than non-smokers overall (because onaverage they die younger, and hence consume fewer health and socialcare resources in retirement) then proponents of the RestorationArgument would be committed to the unpalatable conclusion that smokersshould be given not lower buthigher priority than otherpatients. Otherwise smokers would be harmed by the non-smokers’deliberate attempts to extend their own lives by avoiding smoking. Hisargument is about financial resources but similar considerations wouldapply to organs in relevantly similar situations of scarcity.
Wilkinson concludes that this objection seriously weakens theRestoration Argument. Either it is simply areductio adabsurdum of the Restoration Argument, in which case the argumentmust be rejected wholesale. Or at least its defenders will need toappeal to something else, such as moral or social value, in order toavoid the argument’s unacceptable consequences—thus makingit vulnerable to some of the problems with appealing to social valuenoted above (Walker 2010; S. Wilkinson 1999).
Another wider issue with all of the arguments in this section is thatassigning responsibility for patterns of action and saying whatresponsibility amounts to in such cases will be complex, ofteninvolving the interaction of multiple agents and multipleenvironmental, genetic, and social factors (Brown & Savulescu2019). Therefore, at least in practice, ascertaining for which healthstates an individual is sufficiently responsible will be too difficultand multi-faceted for use in allocation decisions.
In the economy, the amount produced depends in part on how productionwill be allocated, at least insofar as people respond to incentives(see the entry ondistributive justice). For instance, a guaranteed equal share gives no self-interestedincentive to work hard or in an efficient job. In organtransplantation, the number of organs available also depends on howthey would be allocated. In the economy, ideal allocation principlesmay have to yield to the reality of incentives, which is why it isoften thought that strict equality is precluded by concern forefficiency. Similarly, transplantation seems to face a choice; it cankeep its ideal principles and have fewer organs or compromise them andhave more. Some examples discussed here are live donation, kidneyexchanges, directed deceased donation, priority to donors, andpriority to children. These examples are diverse so one cannotstraightforwardly tell whether practice in one is consistent withpractice in another. Nonetheless, they have in common the question:what if the usual principles of allocation led to fewer organs beingdonated than would deviating from those principles? That they havethis question in common has not been widely appreciated, which mayexplain why the question has been answered in different ways in theexamples described below.
Live donation. Most live organ donations have a designatedrecipient, usually a relative or friend (Baily et al. 2020). Usuallythe designated recipient is not the person who would have got theorgan if it were allocated via the method for deceased donor organs.Transplantation systems could refuse such offers for the sake of theirnormal allocation principles—but they do not. One obvioussufficient reason is that, if the organs were not allocated to theperson the donor designates, the donor would not donate and an organwould be forgone.
The suspension of normal allocation principles when live donation isinvolved often passes by without notice, although one recent exceptionis a debate over people on transplant waiting lists who use socialmedia campaigns to find willing donors (Moorlock 2015; Moorlock andDraper 2018). Such cases are a good illustration of the shape of theunderlying issue. If these donors were merely being redirected – thatis, if they were intending to donate anyway, even without a socialmedia campaign – then arguably suspending the normal principles wouldbe tantamount to unfair queue jumping via what has been termed a“beauty contest”. But if these social media campaignsbring new donors and extra organs into the system, and provided thatother ethical conditions are met (notably the valid consent of thedonor), then it would seem churlish to reject such offers, given theircapacity to extend and/or improve recipients’ lives.
Kidney exchange. Sometimes potential live kidney donorscannot donate to the recipients they wish because their kidneys areincompatible with the recipient’s body. Many systems now arrangecomplicated swaps whereby pairs or more than pairs of live donors giveto each other’s recipients (Fortin 2013). Sometimes peopledonate into the general pool in exchange for their preferred recipientgetting the next available deceased donor kidney. Unless the preferredrecipients would happen to get the deceased donor organ anyway undernormal allocation rules, they jump the queue. As with more commonmethods of live donation, the normal allocation principles aresuspended so as not to forgo extra organs.
Directed deceased donation. Much more controversial isdirected deceased donation. The direction can take the form of naminga recipient, as when a dying person stipulates that she wants herorgan to go to her daughter. Or it can take the form of specifying agroup either to receive or be denied the organ. The most controversialdirection has been ethnic, when donors or their families have tried toprevent organs going to members of certain ethnic groups (T.M.Wilkinson 2007b). On the face of it, refusing directed donationsforgoes organs for the sake of a principle of allocation, which is theopposite of practice with live donation. Matters are more complicatedbecause the overall incentive effects of accepting directed donationsare unclear. However, jurisdictions such as the U.K. have bannedaccepting directed donation for reasons besides the overall effect onthe organ supply (U.K. Department of Health 2000 inOther Internet Resources). They have cited principles such as allocation according to need asgiving sufficient reason, independent of effect on numbers. Aconsistency argument can be put to them: why do they accept deviationsfrom allocation according to need in the case of live donation butreject them for deceased donation?
Priority to donors. A minority of jurisdictions give somepriority in receiving organs to those who have declared theirwillingness to donate (Cronin 2014). One reason is the supposedincentive effect of giving priority to donors of encouraging moredonations. Priority schemes have been criticized on practical groundsbut some criticism invokes principles, such as allocation according toneed (Quigley et al. 2012). As before, the principles are supposed bythose who cite them to be sufficient to defeat priority schemes evenif they would produce more organs. By contrast, the principles are notthought to outweigh getting more organs with live donation and kidneyexchange.
Priority to children. Nearly all jurisdictions give priorityto children when allocating kidneys from deceased donors. One upshotseems to be a reduction in the overall supply of organs, at least inthe United States (Axelrod et al. 2010). People who would have beenlive donors to children do not donate when the children get rapidaccess to deceased donor kidneys. Perhaps potential living donorswould rather have the child get a deceased donor organ than run therisk for themselves; perhaps they would like to hold their kidneys inreserve in case the children need retransplantation or other childrenneed them. One might think that if priority to children reduces thenumber of living donors to them it should increase the number ofliving donors to adults. Nonetheless, the overall effect is negative.As before, those who endorse the principle of priority to childrenhave some choosing to do; how many organs are they willing to forgofor the sake of the principle, and is the answer consistent with theirwillingness to accept designated live organ donations (T.M. Wilkinsonand Dittmer 2016)? A more unpalatable choice would arise ifdiscriminatingagainst children produced more organs via livedonation.
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beneficence, principle of |coercion |death: definition of |decision-making capacity |ethics, biomedical: clinical research |ethics, biomedical: justice, inequality, and health |ethics, biomedical: privacy and medicine |informed consent |justice: distributive |libertarianism |mental disorder |paternalism |respect |sale of human organs
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