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Normative consent and opt-out organ donation
  1. Ben Saunders
  1. Correspondence to Dr Ben Saunders, Corpus Christi College, University of Oxford, Merton Street, Oxford, UK; ben.saunders{at}philosophy.ox.ac.uk

Abstract

One way of increasing the supply of organs available for transplant would be to switch to an opt-out system of donor registration. This is typically assumed to operate on the basis of presumed consent, but this faces the objection that not all of those who fail to opt out would actually consent to the use of their cadaveric organs. This paper defuses this objection, arguing that people's actual, explicit or implicit, consent to use their organs is not needed. It borrows David Estlund's notion of ‘normative consent’ from the justification of political authority and applies it to the case of organ donation. According to this idea, when it is wrong to withhold consent to something, the moral force of that lack of consent may be null and void. If it is wrong of a person to refuse to donate their cadaveric organs to others, then it may be that their actual consent is not needed. This supports an opt-out system, which provides protection for those who have genuine reasons to refuse donation, and spares the worries as to what the deceased would actually have wanted.

  • cadaveric organs
  • consent
  • opt-out donation
  • organ procurement
  • presumed consent
  • right to refuse treatment
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Shortages of donor organs mean that many patients who could have been saved by transplants die on waiting lists. It seems imperative to find some way of increasing organ donation, allowing us to save more of these lives. Various solutions have been suggested—even legalising markets in organs, so potential donors can be lured by financial inducement.1 2 One more modest proposal, which has been considered by the UK government, is to replace the current opt-in system of donor registration with a system in which people must opt out if they do not wish for their organs to be used.3–7

Whether an opt-out system would increase the supply of organs is contestable.3 6 If many people will not register either way, then it will allow us to use their organs. Shifting the burden of registration on to those who wish to withhold their organs acts to help ‘nudge’ people in the desired direction.8 It is possible, however, that, in the wake of scandals such as Alder Hey, there could be a public backlash against such measures, leading more people to opt out than currently fail to opt in.7 The supply of organs could thus actually diminish, especially if a coherent justification for an opt-out policy cannot be found.

Unfortunately, particularly in the public debate, opt-out organ donation is frequently called ‘presumed consent’.3–7 This is problematical, because it conflates a practical policy with one specific justification for it. There are various reasons to think that those who fail to opt out may not actually consent to the use of their organs. It may be that they are uninformed, have not thought about the issue, have not yet registered their opinions, or have changed their mind since doing so. If we simply presume consent, then we will predictably take organs from some who do not actually consent.9 If actual consent is necessary, this is a telling (although not necessarily decisive) objection against opt-out systems.

This article provides an alternative defence of opt-out organ donation. Rather than assuming that consent is necessary, but can be presumed when people have not explicitly stated their wishes either way, I suggest that the importance of saving lives may justify us taking organs without people's actual consent. Nonetheless, I do not completely abandon the idea of consent. An opt-out system allows people to veto the use of their organs by explicitly dissenting. We can find a coherent theoretical rationale for this system by drawing on David Estlund's idea of ‘normative consent’.10

Varieties of consent

There is a considerable amount of literature on the subject of consent.11–13 To summarise all the distinctions drawn would be impossible, but it is worthwhile beginning with a few that should be familiar, even if the terminology sometimes varies. This will clarify the issue.

First, we can distinguish between actual and non-actual (ideal or hypothetical) consent. The former requires someone's deliberate and voluntary action (including inaction). Non-actual consent, conversely, is a counterfactual idea, not requiring any particular act from the person in question. We might employ this notion when we consider what an unconscious patient would have wanted. We cannot secure their actual consent to a particular procedure, but we make certain assumptions about what they, or an ideally rational person in their situation, would consent to. I cannot settle here what we should do when a patient's actual wishes come apart from their idealised wishes or when it is legitimate to appeal to hypothetical forms of consent. Nonetheless, this distinction is important because I later employ one particular form of idealised or non-actual consent, namely normative consent.

Second, we must distinguish between explicit (express or active) consent and implicit (tacit or passive) consent. The first is an active notion, as when someone signs a consent form. The second occurs without some specific act of consent, either because some other act is taken to signify consent (eg, entering a competition implies acceptance of the rules) or because, in a particular context, inaction is itself a sign of consent (eg, when the chairperson of a board meeting declares a motion carried unless there are any objections). Implicit consent is still actual. Those present at the meeting know that their silence will be understood as consent, so if they do not object then they have actually consented, albeit implicitly.11

Presumptions and choices

With these distinctions drawn, let us consider ‘presumed consent’. It is often unclear exactly what this is supposed to mean. One possibility is that the situation is understood like the meeting just described, as a context in which silence signifies (implicit yet actual) consent. If this is so, then it is a misnomer to talk of presuming consent, because there is in fact actual—although implicit—consent, but let us consider this interpretation. Note that the board meeting case is special. Certain things are understood from the context: it is clear that silence signifies consent, exactly what this consent is to (the tabled motion) and objecting is relatively costless. Whether these conditions hold in the case of organ donation is unclear. First, people may be unaware that their silence will be taken as consent or of exactly what is involved in organ donation. Second, it is not necessarily costless for would-be objectors to opt out. Those who opt out may face social stigma unless privacy can be guaranteed, and even making a decision requires one to consider the uncomfortable fact of one's own mortality, which may be a cost that people should not be forced to bear.1

It seems that we cannot take someone's failure to opt out of a system of default organ donation as a sure sign of their consent to the use of their organs. That should be unsurprising; I am not aware of anyone who concludes that someone has actually consented simply because they have not opted out. The usual line is simply that, when we have no record of someone's wishes, we may presume their consent. Opt-in systems, as currently operative in the UK, assume that we should not run the risk of using someone's organs without their consent. An opt-out system, conversely, focuses on the good that can be done—and the fact that some people probably do want their organs used—so the default position is that we should use someone's organs unless we have a record of their explicit dissent.4

Framing the issue in terms of presumed consent, however, is problematical, because it suggests that actual consent is necessary, but presumptions are defeasible. Whether we have an opt-in or an opt-out system, there will be many people whose wishes are unrecorded. Whatever we do, we will surely end up contravening the wishes of some of these—either not using organs of people who would have liked them used or using the organs of people who would object. If 20% of people opt in as donors, while 30% of people would opt out if they had to, then this leaves 50% of people whose true preferences will never be known whichever system we adopt. An opt-out system increases the organ supply only by permitting surgeons to take organs from these people, but they do this without explicit consent and surely, in some cases, against what the deceased would have wanted.

One may wish to avoid making presumptions as far as possible; for instance by introducing a mandatory choice regime, so that all persons have to consent or object explicitly to the use of their organs.6 14 Proponents of such a scheme suggest that it removes uncertainty about the deceased's preferences, because they will have declared their wishes either way. This is too strong; however, there will still be some cases of uncertainty, for presumably children will not yet have declared a preference, whereas adults may have changed their mind since declaring their decision. Nor is it clear how this mandatory choice can be institutionalised. It is not enough to include such a choice when people apply for a passport or driving licence, because not all individuals have these. The introduction of compulsory identity cards, suggested in the UK, may provide a solution, but these may be objectionable in themselves. Moreover, there is again the problem that requiring people to decide what happens to their organs after they die may be objectionable, because it forces them to confront the uncomfortable fact of their own mortality.1

Even a mandated choice system does not allow us to be sure that we never use someone's organs without their actual consent. While any system that simply presumes consent to be present, whenever a patient's wishes are unknown, surely exacerbates the danger of using organs without consent, this is only problematical if we continue to accept the premise that we need someone's actual consent before we can use their organs. A more successful strategy for justifying an opt-out system of organ donation may do away with the presumption by arguing that actual consent is unnecessary. I provide one particular example of such a strategy, utilising a form of non-actual consent.

Normative consent

One of the many interesting contributions in Estlund's recent book10 on democratic authority is an idea he calls ‘normative consent’, which is a hypothetical alternative to actual consent. Estlund10 observes that actual consent is often taken to be necessary but not sufficient to justify whatever is consented to, as for example it may be coerced or uninformed. In these cases, the usual force of the consent is nullified. Estlund's innovation is to suggest that, in certain conditions, a lack of consent may also be nullified or invalid. His main focus is on cases in which it is morally wrong of someone not to give their consent. In these cases, he argues, we may sometimes be able to treat people as if they had consented, because their refusal is void. I cannot, here, provide a full assessment of this idea, which will surely attract much debate15 (I am also aware of unpublished comments by William Edmundson and Jeremy Farris). Nonetheless, I hope to show how this provides a coherent justification for an opt-out organ donation policy, thereby motivating further enquiry.

There is an appealing symmetry to the idea that both consent and non-consent can be nullified. Moreover, it would seem strange if, when one was morally required to consent to something, one could escape further duties simply by withholding that consent. This would simply allow people to abuse their power to withhold consent. Intuitively, some wrongful refusals of consent do seem void. To use one of Estlund's examples, if one's room-mate always refuses to let you play your radio, then they are unreasonable and you are permitted to play your radio sometimes, despite their lack of consent.

Of course, there are other cases in which a refusal of consent seems binding, even if wrongful. Estlund's example is one of sexual contact.10 In a committed relationship, it may be wrong of one partner always to refuse consent to sex. Even so, this would not excuse the other for attempting to force such contact. I cannot say exactly what separates this case from the previous one and nor does Estlund, although he suggests that many cases in which non-consent is less obviously voided concern the body (the implications of this for organ-harvesting are explored below). Nonetheless, it can be fruitful to explore a commonsense intuition, even if we cannot give it a theoretical justification.16 Normative consent is worth exploring if it can (as I show below) provide a justification for opt-out systems of organ donation.

The immediate response may be to question the value of talking about ‘consent’ at all. If we accept that actual consent is not necessary, why go to the trouble of inventing some fictional ‘normative consent’, rather than simply dispensing with consent altogether? One reason for framing the issue in terms of (admittedly idealised) consent is that this is the way the debate has been phrased up to now. More importantly, normative consent retains some connection to the will. If we said that consent is irrelevant, so organ-harvesting is permissible whatever the deceased's wishes, then there would be no need to allow opt outs. As we saw above, however, some cases of wrongful non-consent are still valid. An opt-out system allows reluctant donors to veto the use of their organs, as I shall shortly explain.

The duty to donate

It remains to apply normative consent to the case of organ donation. The basic argument runs thus: if it is wrong of people to refuse consent to donation, then we may be permitted to take their organs, although they have not actually consented (explicitly or implicitly). We need not presume anything about whether someone would actually have consented, given the opportunity—rather, we are entitled to treat them as if they had, simply because it would be wrong of them not to do so. The case might be compared to inheritance, if we assume that people are under a prima facie obligation to support their next-of-kin.4 12 In this case, people have a right to make a will that leaves their estate to some other person but, in the absence of such a will, their estate will pass to their next-of-kin. Here, it is assumed that people have a (negative) right to keep their organs but, unless they exercise it by opting out, then their organs can be used.13 17

The argument rests on one crucial premise: that it is wrong for (most) people to withhold their consent to postmortem organ donation. This seems plausible. Peter Singer has argued that any moral theory ought to accept the principle that, when we can prevent something bad, such as a death, without sacrificing anything of comparable moral importance, we ought to do so.18 Exactly how much one is required to sacrifice is contested, but some burdens can plainly be demanded.19–21 Organ donation saves (and improves) lives, which creates a prima facie duty to donate. This is, arguably, even stronger when the donation is necessary to save not distant strangers but our fellow citizens, with whom we are engaged in a cooperative enterprise and who we may have particularly stringent duties to support. Moreover, donors may themselves have been recipients of organs or other health care, giving them further reciprocity-based reasons to donate in turn.22

There are clearly powerful reasons in favour of organ donation, but whether it is obligatory depends on the sacrifice required of donors. If the duty was too onerous, then donation would be supererogatory and refusal would be permitted. However, it seems that the burden demanded is small. People's organs are of little use to them after their death and the costs of posthumous removal are less than those faced by a living donor (in particular, there is no risk of death from postoperative complications).22 Therefore, most people probably can save lives at little, if any, cost to themselves (I deal with possible excuses, such as conscientious objections, in the following section), placing them under a duty to consent. If this is so, their actual consent may be unnecessary, and we may be permitted to remove their organs without making any presumptions about their actual wishes.

Opting out

Note that I only claim that most people are under an obligation to donate their organs after death. It is permissible for them to withhold their organs only when donation would impose costs upon them that they are not required to bear to save a life. I need not commit myself to any particular level of burden, but I think that most people are under an obligation to donate.

One plausible exception is those whose religious beliefs prevent their posthumous donation (perhaps because their body must be buried intact if they are to reach the afterlife). One need not share someone's religious beliefs to accept that such convictions may be of central importance to someone's life and the way they wish to be treated, even after death.2 23 The prospect of eternal damnation is indeed a significantly weighty cost that it can justify those with the relevant beliefs from refusing to donate their organs. Members of these groups are not under a moral obligation to donate, so cannot be said to have given their normative consent. They are permitted to deny their consent and the opt-out system allows them to do this, by expressing their explicit refusal. This does not seem problematical, because we may assume that the scheme—and the possibility of opting out—will be widely advertised among such religious groups, if there are any, and that those who feel so strongly will take the trouble to register their objection. The possibility of opting out means that the system, unlike one of compulsory organ harvesting, is no threat to those with certain religious convictions. In fact, an explicit record of their refusal arguably offers them better protection than the current system.7

There will predictably be others who wish to opt out simply because they dislike the idea of their organs being used for others. Let us assume that this is mere ‘squeamishness’ and not enough to justify or excuse the refusal of potentially life-saving organs.2 These people are rather like those who refuse to save a drowning child because they do not want to get their clothes wet. Their action may be morally unjustifiable, but it does not follow that we should refuse to respect their wishes. If they explicitly dissent, by opting out of the system, then we do not use their organs. Patients are generally allowed to refuse medical interventions, even for bad reasons.7 12 The right they have to their body—like many other rights (eg, free speech or property)—includes the right to do wrong, by refusing to let someone use their organs. Their explicit refusal of consent still has force, as when one partner refuses sexual contact.

This gives us two classes of people who opt out: those who do so permissibly, because having their organs used would be costly to them, and those who do so wrongly, because their reasons do not in fact justify them leaving others to die. Neither group will have their organs used, but the majority of people, I assume, will not opt out. We are allowed to use their organs, not because they have actually consented or because we presume consent on their part, but simply because they morally ought to consent and that makes their lack of actual consent normatively irrelevant.

Conclusion

It is difficult to justify an opt-out system of donation on the grounds of presumed consent, because this suggests that actual consent is necessary for the use of organs and sometimes the presumption will be false. If we appeal to Estlund's idea of normative consent though, then we do not need most people's actual consent, because it is sufficient that they are under an obligation to give it. An opt-out system still allows people freedom explicitly to deny their consent, which maintains its connection with the will and protects both those with good and bad reasons for refusing. Normative consent thus explains the key features of an opt-out system. It justifies us taking organs from those who do not object, without making problematical assumptions about their consent, or denying people the right to veto that use.

References

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Footnotes

  • Funding Faculty of Philosophy, University of Oxford.

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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