Organ harvesting and the issue of consent

A vote on a topic that affects intimate and profound personal beliefs is a good thing
© CdT/Chiara Zocchetti
Giovani Galli
19.05.2022 10:32

It is a good thing that we are going to vote on organ donation. The People's Initiative to Introduce Presumed Consent, since withdrawn, was intended to spur a broad public debate, which actually did not happen. Government and Parliament closed the loophole without difficulty, accepting the main demand and retaining the obligation to consult relatives in the absence of any indication by the deceased. The voting campaign sparked by the referendum was therefore an opportunity to discuss in depth an important change of paradigm, in a field that affects intimate and deep convictions; to increase awareness of an issue that most people tend to remove, but that affects everyone, both as would-be donors and as possible patients in need of a transplant; and to consider the implications of a model that is intended to save more lives but also involves increased state intervention in the personal realm and touches upon fundamental rights.

The supply of organs is inadequate. Every year 60 to 70 people on the waiting list die for the lack of a compatible organs. Most of the cases in which there are medical preconditions for harvesting organs concern people who have left no indications. Hospital staff ask family members, but since they are not familiar with their relative's wishes, three out of five times they deny permission. The federal government had also launched an action plan with the intent of increasing the donor rate to 22 per million population by 2021, but while there was an increase, the goal was not met. A figure that at first appears to be in contrast to the asserted willingness, given by the majority of people in surveys, to donate their organs.

The state has so far maintained a neutral role. The decision whether or not to donate organs rests with the individual, giving free and explicit consent while alive, or subordinately with family members. With presumptive consent, there is a reversal of method. Everyone becomes a donor in principle, except if while alive they declare an unwillingness to have their organs removed. In the absence of any indication, the final say would still rest with family members, who would retain a veto if they believed that the presumed will of the deceased was against organ donation. For advocates of presumed consent, the moral burden on the relatives would diminish because the responsibility would be shifted to the deceased. The rate of refusal would drop and consequently the availability of organs would increase. Yet, ethical aspects aside, it has yet to be proven that the system shift will bring the desired results. There are no scientific studies that attest to a direct link between presumed consent and donation rates. There are countries where the latter is highest but also countries where it is lower than in Switzerland. And in the former, for example, Spain, the presumed consent is accompanied by good organization of the system, specific training of doctors and nurses, and an investment in public awareness programs. The effectiveness of the new system is controversial. Dependent on contexts, psychological and cultural factors remain crucial when confronted with certain choices.

Ethically, the discourse is complex. One must also consider the plight of the sick (including children) who live in a condition of suffering and anguish, clinging to the hope of finding a compatible organ. If by the decision of a donor's family members it can happen that an organ is taken from someone who in life had never thought about it or was deeply opposed to it, there is also the risk of not taking it from someone who perhaps would have been in support, jeopardizing in this way, for one or more people, the chance to continue living. But the system of presumed consent is problematic from the standpoint of individual rights. The state, by establishing a special registry, would require non-donors to articulate a deeply held belief that should remain entirely eminently private. And at the same time, with presumed consent, the right to decide what will become of one's body after death would be less protected. In both cases there would be an encroachment. Already a decade ago, the National Commission on Ethics in Medicine had advised adherence to the principle of neutrality, since "no one can claim to have any rights over someone else's so-called 'lost organs.'"

That's why in 2019 it had suggested a declaration system under which citizens would be regularly asked to take a position (with the option to opt out) on the issue of donation. But Parliament, unfortunately, said no.