Respecting rights … to death

Ravelingien et al¹ argue that, given the restrictions that must be imposed on recipients of xenotransplanted organs, we should conduct clinical trials of xenotransplantation only on patients in a persistent vegetative state. I argue that there is no ethical barrier to using terminally ill patients instead. Such patients can choose to waive their rights to the liberties that xenotransplantation would probably restrict; it is surely rational to prefer to waive your rights rather than to die, and permissible to allow patients to make this choice.

Perhaps the single most important advance in the history of moral thought occurred when it came to be generally recognised that all people are protected by rights that are inviolable, at least without their consent. The precise nature and content of these rights is controversial, but there is a consensus among reasonable people over their core. We all have a right to life, to liberty, to security of person and to equality before the law. Other rights—so‐called positive rights, such as the right to economic security, or cultural rights, for instance—may be controversial, but we all agree at least on these.

Ravelingien et al¹ therefore seem to be on solid ground when they conclude that it would not be permissible to use living persons as subjects in clinical trials of xenotransplantation, as such trials, potentially or actually, result in the violation of the core human rights of the subjects. Their argument is as follows:

Xenotransplantation carries with it a currently unquantifiable risk of the transmission of viruses, from the animal that is the source of the organ transplanted, to the human recipient. Such viruses could have potentially catastrophic consequences, up to and including triggering a global and devastating pandemic. Therefore, it would be necessary to monitor the health status of recipients of donated organs for many years, even decades, to ensure that the symptoms of such infections have not developed. Xenotransplant recipients would therefore need to submit to a regime of intensive and extensive scrutiny. They would have to make themselves available for regular testing and their sexual partners would have to be warned of the potential for infection. They might be advised to forgo having children. Worst of all, if signs of an infection are detected, or if the risks are felt to be great enough, they might find themselves confined in quarantine. But all of these actions are violations of their human rights. Since we have a right to shape our life as we see fit, to associate with whom we like and to travel where we like, we cannot morally be treated in the ways that xenotransplantation to persons would necessitate.

Ravelingien et al¹ therefore suggest that, xenotransplantation trials should be conducted only on people who are in a persistent vegetative state. As such people no longer have an interest in freedom of movement and association, we do not violate their rights by confining them. If they had, when competent, consented to participate in such trials, using their bodies for clinical trials of xenotransplantation should be no more controversial than the range of uses to which we currently put cadavers in research and in training surgeons.

This proposal, however, faces a serious objection. If it is permissible to use patients in a permanent vegetative state (PVS) for clinical trials of xenotransplantation (and I think it is, if all safety considerations can be successfully dealt with), then why is it not permissible to give such transplants to patients who would otherwise die? The use of terminally ill patients, rather than patients in a PVS, has several advantages.

Firstly, any virus transmitted from animal donors to human recipients might possibly produce effects in normal people, but none in patients in a PVS. This would be the case, most obviously, if the virus attacked those parts of the brain that are irretrievably damaged in patients in a PVS, such as the cortices, while leaving the brain stem unaffected. To that extent, a competent agent would be a better subject for clinical trials than a patient in a PVS.

Secondly, terminally ill patients could potentially benefit from xenotransplantation, by receiving a more or less lengthy extension of their lives as a result of participation in the trial. For the same reasons that patients in a PVS cannot be harmed by the restrictions the trials would require, they cannot be benefited either. Conversely, for the same reasons that the terminally ill can (potentially) be harmed by these restrictions, they can be benefited.

Ravelingien et al¹ argue that we cannot ethically place such restrictions on people who have done nothing to deserve them. This seems false to me. Although we are prohibited from violating the rights of others, anyone is entitled to waive their own rights. Indeed, if our rights survive the loss of consciousness, as they surely do, then Ravelingien et al¹ must concede that this is so: patients in a PVS may only be used as subjects in xenotransplantation experiments with their prior consent, they argue; in other words, when they have waived their rights to certain kinds of treatment when they are no longer competent. In the absence of this waiver, patients in a PVS plausibly have their rights violated, even if they are not harmed by the procedure. But if one class of patients can waive their rights, they why not the other, especially when only the second class of patients can benefit from the experimentation to which they consent?

If patients can avoid death only at the cost of sacrificing some or all of their rights to freedom of movement or association, then they have a right to make this choice, and, assuming that no one is responsible for the predicament that forces them to choose between these options, no one has acted unethically. To see this, consider the absurd consequences of implementing the proposal advocated by Ravelingien et al¹. A patient with a terminal illness may volunteer to participate in potentially life‐saving xenotransplantation clinical trials. The scientists conducting these trials would be forced to respond: “We cannot use you now; make a living will and perhaps we shall consider you once you die.” The patients are assured that their rights will be respected, but this is small comfort.

Of course, as Ravelingien et al¹ point out, patients who consent to the restrictions envisaged as a condition of participating in clinical trials may change their minds after receiving the transplant. We should have to be prepared to continue to restrict their movement, even against their wishes. I do not see this as a great worry. If there is a real and definite public health risk, then we would have to be prepared to restrict their movement in any case, whether or not they had consented to participate in the trials. We already possess the right, and the responsibility, to protect public health, even at the cost of infringing on another's rights: carriers of infectious diseases can already be quarantined against their wishes. The fact that recipients had agreed to participate in the trials simply makes our decision easier. Therefore, no ethical barrier prevents the use of terminally ill patients in xenotransplantation trials.