Does Organ Donation Respect People's Autonomy?

Leonardo Da Vinci's Vitruvian Man

In this article I will argue that the presumed consent or opt-out system of organ donation does respect people’s autonomy in principle; but that for the system to respect people’s autonomy in practice the state must be held responsible to following a higher standard in the procedure, or else it runs the risk of manipulating or exploiting people’s autonomy in the interest of procuring organs. I will do this by first explaining the opt-out system and why it respects people’s autonomy, before raising the possible issues that come with an opt-out system in practice. Then, I will conclude that the system is, in principle, compatible with people’s autonomy, and that the burden is on the state to actually implement it in a way that upholds that principle.

To begin, the presumed consent, or opt-out system of organ donation is a registration system by which all citizens of a state will become organ donors at the time of their death by default. If a person does not wish to become an organ donor when they die, they have the opportunity to explicitly refuse their consent to do so by notifying the state. If they do not notify the state of their decision, the state presumes them to consent to the removal of their organs at the time of their death. This system is intended as a solution to the shortage of organs available for those in need of an organ transplant, and there is empirical evidence to show that it does satisfy this objective although we will not go into details here. The point is that it is a system that has results, and therefore we have reason to implement it, or to continue to implement it. However, there is an ethical issue, namely, that of consent. It has been argued that in this system, the core value of autonomy is disrespected because the state fails to secure actual consent from its citizens. This is because the default position is that of non-action: People are considered to have consented to becoming an organ donor when they have not told the state that they do not wish to be organ donors.

Thus, there is a non-negligible risk of people having their organs harvested at the time of their death even if they were opposed to that, and this violates their bodily autonomy, and autonomy of choice. This is in stark contrast with the standard of valid informed consent used in the medical community, which, briefly, holds that a person has consented to a medical procedure i.e. invasive surgery, blood transfusion etc. only if they have the capacity to do so. They have been given adequate, relevant and sufficient information, and they have not given the consent under any influence from a doctor, family member or otherwise. In other words, a person’s consent to X is only valid if they know that they are consenting to X. In the case of the presumed consent system, the consent is exactly that — presumed. It is not clear whether the person knows that they are consenting to X, or that they know that certain actions are constitutive of the consent of X. So, presumed consent is not actual consent, thus it violates autonomy. If this is true, then the opt-out system is seriously morally problematic. I will now give an account of a defence of the opt-out system that shows that it is not true that it violates people’s autonomy.

NHS UK (2019). Organ donation advertisement. NHS South Central Ambulance Service. Available at: https://www.scas.nhs.uk/organ-donation-week-2019/.

One defence of the opt-out system holds that it does secure actual consent from people, as opposed to presumed consent, by way of securing tacit consent. According to Saunders, tacit consent is secured when a person does not dissent to becoming an organ donor, knowing that their non-action signals consent to becoming an organ donor. This consent is only valid if it is clearly and regularly communicated to the public that a person’s not opting out is to be considered as consent to organ donation, and if the process of opting out is simple and not costly (of time or money). If and only if these conditions are met, then a person’s act of not opting out does constitute actual consent. In this way, consent acquired via the opt-out system is not presumed consent, but actual consent. If people know that this system is in place, and that not opting out is to consent to organ donation, and they do not choose to opt-out, then in principle this is on par with choosing to opt in. However, Mackay argues that this is not necessarily the case. Mackay asserts that these conditions are not sufficient to secure actual consent, because in practice, it cannot be certain whether people actually understand the details of the system, and importantly, that their non-action will be taken to be affirmative consent for becoming an organ donor. This is because people can be unaware of the system, or its details, or simply not have the time or interest to look into it. Additionally, the state can even implicitly (or explicitly) exploit its citizens’ lack of interest or awareness in order to procure more organs. This is to say that the state can turn a blind eye to the non-action of its citizens, taking it to be actual consent, giving the benefit of the doubt as to whether their non-action was validly chosen or not. So, given these practical barriers, Mackay holds that the opt-out system does not secure actual consent, and therefore does not respect autonomy rights.

Mackay is correct in flagging up these issues, which would amount to serious ethical violations of people’s autonomy. However, this does not show that the opt-out system is in itself flawed — rather, it just shows that the state has a much higher responsibility to its citizens than previously outlined in Saunders’ conditions for tacit consent. For in principle, if a person does choose not to opt-out, after they have understood that their not-opting- out is constitutive of opting in, as it were, then tacit consent is validly given. So, the issue at hand is how to bring that about. Hartogh provides a few suggestions, among which include a system discussed by the German Ethics Council, whereby every citizen is sent a letter at the age of 18, asking them to notify the state of a decision regarding organ donation. The options are to consent, refuse or to delegate the decision to a named person. Failing to receive a response, the state sends letters regularly, until after a certain amount, they will notify the person that their continued failure to register a response will constitute consent to organ donation. They will then be notified, given their continued non-action, that they are now registered to become an organ donor. They will continue to have the option to register a different decision, which will be available freely and accessibly. If perhaps, this system was taken further to be a compulsory question when registering for a drivers license, or even on every tax form, then it could have much smaller chances of mistaken cases. To put it briefly, the moral permissibility of an opt-out system depends on its effective and inclusive implementation on the part of the state. Failure to make every aspect of this accessible, easy to understand etc. is a moral failing of the state, and a violation of its citizens’ autonomy rights. However, implemented correctly, the opt-out system is a morally permissible and pragmatic solution to the problem of organ shortages that secures actual consent and respects people’s autonomy.

References:

Den Hartogh, G. (2011). Tacitly consenting to donate one’s organs. Journal of Medical Ethics, 37(6), pp.344–347.

MacKay, D. (2015). Opt-out and consent. Journal of Medical Ethics, 41(10), pp.832–835.