Following an Independent Report from the Organ Donation Taskforce in 2008 the possibility of an opt-out Organ Donor Register (ODR) for the UK as a whole become remote. However the vagaries of devolution have allowed the Welsh government to resurrected the idea, if only for the population of Wales. As a general proposition I am against such a system believing it to be a step to far in allowing the state or ‘public’ interests to dominate the individual. However in the case of the current proposals being considered in Wales there are, I think, further concerns that means caution would be recommended. They can be divided into two distinct areas. The first are what we might call practical concerns of implementation and good governance. The second are concerns that suggest that, given the way posthumous organ donation is currently practiced, an opt-out ODR can no longer be considered symmetrical to an opt-in ODR. This indicates a pressing need to reform the current shape of the UK’s ODR.
In the first instance it appears the Welsh proposals will apply to all those who have been resident in Wales for 6 months or more. Presumably this means some official list of Welsh citizens[1] will be used to form the basis of a specifically Welsh ODR and it will be updated every 6 months. Transplant professional will consult the list to ascertain if an individual has opted out. But this relies on them knowing whether an individual is a Welsh citizen. If they cannot find an individual on the list will they be presumed not to be a Welsh citizen? No further corroboration will be available, if they fail to appear on the UK ODR this may be because they simply do not wish to donate or have not, for whatever reason, registered. Only if an individual does appear on the list will healthcare professionals be able to assume an individual is a Welsh citizen and therefore an organ donor. However in this case a Welsh citizen is someone who has been registered as living in Wales for 6 months. Many current Welsh citizens are, I am sure, aware of the proposals, but are they all? And what of those who move to Wales after implementation, will they be made aware of the register and the fact they are automatically included? What of asylum seekers or other socially disenfranchised individuals. How will the Welsh government ensure these people are fully informed of their registration and right to refuse?
At the present time, of course, many Welsh citizens are currently registered with the UK ODR. As currently conceived only positive desires to donate are registered, although you can limit the organs you wish to donate. We might question whether and how any new Welsh ODR will take note of these wishes and how will individuals be able to ensure that their wishes have been noted and noted correctly? Can this be achieved without this information being made public? Indeed will any opt-out system of registration inaugurated by the Welsh government be constituted so that it can register these wishes? An opt-out ODR is predicated on the symmetry of the question: to donate or not to donate? Whilst not assuming anything about your wishes the UKs current ODR only allows you to answer positively. In contrast an opt-out ODR assumes you are willing to donate and therefore only allows individuals to register a negative response. Both approaches are erroneous, an ODR should not assume anything and allow both positive and negative response to be registered. However the point in regard the Welsh proposal is whether it will be assumed that the individual wishes to donate all their organs or just some of them. And whether an individual will be able to amend the register to express their wishes in this regard.
ODRs do not ask one question but require further detail. At the moment this detail is so minimal that is allows the presumption of opt-out/opt-in symmetry to be preserved. However there is an increasing diversity in organ donation practices that, in my view, donors should be able to refuse and, therefore, should be reflected in the ODR. At the present time individuals can donate under protocols for brain death or cardiac death. Furthermore donations after cardiac death can be controlled or uncontrolled which, simply put, are cases when the life support machine is turned off vs cases when an individual dies unexpectedly. These protocols are designed to facilitate the retrieval of organs in different sets of circumstances and have different implications for what might happen to you and when. Death is not simply death any more. Even before the recent introduction of protocols for donation after cardiac death the anthropologist Margret Lock considered donors to be, in effect, twice dead. These multiple ways of determining or ‘diagnosing’ death may or may not the way in which an individual thinks about death itself, as a metaphysical proposition, which is to say in reality.[2] Medical professionals and, increasingly, philosophers are largely agnostic about such a possibility preferring to delineate in a more or less well defined manner various ontological aspects of human being. These tend to be expressed as irreversible cessation of essential biological functions such as cardiac, circulation and respiration, the loss of brain function either whole or ‘higher’ and the process of biological (dis)integration. In such views it is not clear that, as commonly assumed, death can be though of as occurring at any well-defined point in time.
The conclusion that many drive towards is that death is now not only a ‘biomedical fact’ but also a moral or ethical category. Once someone is dead their organs can be taken for the purposes of transplantation. However, if death is a moral boundary and, furthermore, one about which there is some controversy or difference of opinion should it not be given to individuals to decide when, amongst these possibilities, they consider themselves to be dead and so when, and under what circumstances, they wish to donate their organs? The idea that death is a well-defined moment is so ingrained in our contemporary culture that these concerns have not yet lead to demands that the ODR be reformed, although a recent report by the Nuffield Council on Bioethics argues for substantial reform. However these are not the only question we might want to see posed by any reformed ODR. On the horizon is the possibility of something called elective ventilation. Organs are generally in a better state when they are harvested following brain death, than they are following cardiac death. And similarly for controlled cardiac death and uncontrolled cardiac death. Elective ventilation has the potential to allow the death to be managed. However it is something that is done to the patient that keeps them alive for a longer period of time but is not done in the interest of saving their lives. Patients who are electively ventilated are not expected to live, but are treated so that their organs might a. be retrieved and/ or b. be in a better condition than would otherwise be the case.
To be clear, elective ventilation is not yet practiced in the UK and nor is it a simple procedure. It has been suggested, by the BMA in its report Building on Progress, that we should practice it, and some think it would be legal to do so. However such concerns suggest an urgent need to reform and fundamentally redesign ODRs to allow people to express their views on the various practices that constitute organ donation. This rules out taking an opt-out approach to donation because the responses required are now (or should now be) complex and we cannot assume what the standard answers will be. This complexity means that opt-out and opt-in systems of registration for organ donation are now (or should be) obviously asymmetrical and so cannot be considered ethically equivalent. The Welsh government should abandon plans for an opt-out ODR and, if it wants to lead the rest of the UK in attempting to increase donation rates, design an ODR that engages with people and the views they might have about donation in the contemporary moral landscape of biomedicine.
[1] If it works in a manner similar to the current registration process for the UK as a while then it is likely to be based on NHS registrations.
[2] The following discussion is, in some way, predicated on debates that purport to show that, as commonly conceived, death is not real, again as commonly conceived.