Everyone should have to decide

A presumed consent system for organ donation, which is to be put to the vote in Switzerland, would likely increase the organ donation rate, writes bioethicist Agata Ferretti. In her view, however, there is an even better solution: the obligation to decide.
Agata Ferretti is a postdoc at the Health Ethics and Policy Lab of ETH Zurich. (Photo: ETH Zurich)

In Switzerland, organ donation is currently performed on an opt-in basis. Organs from deceased persons may currently only be removed for transplantation if they have consented to organ donation during their lifetime or if, in the absence of explicit consent, close relatives declare that organ donation corresponds to the presumed will of the deceased. Although recent surveys show that almost 80 percent of the Swiss population are in favor of post-mortem organ donation, in reality nowhere near the number of organs and tissues are donated as would correspond to the needs of organ recipients1.

One reason for this is that a majority of the population do not express their will to donate while still alive. Thus, family members must take on the burden and responsibility of such a choice. In these circumstances of great emotional distress, and often without precise indications from the deceased, family members tend to deny consent to donation – even though this decision may differ from the wishes of the deceased2.

In order to encourage organ donation and overcome the presumed discrepancy between people's wishes and their families' decisions, the Federal Council proposes to reverse the system of deceased organ donation from an opt-in to an opt-out system, while safeguarding vulnerable people from being exploited.

Presumed consent system in most of Europe

In the opt-out system, the consent of the deceased person is the default option. In other words, a person is presumed consenting unless he or she has expressed his or her refusal while alive. Under the proposal to be voted on 15 May, Swiss residents over the age of 16 are invited to actively reflect and record on the soon-to-be-established national register whether they would refuse to donate organs after death.

To counteract the risk of leaving some people (e.g., vulnerable groups) inadequately informed about the possibility of registering their will, even though intensive awareness campaigns will be undertaken, family members retain the ability to report the wishes of the deceased. In the absence of declared opposition and the possibility of contacting family members, organ removal does not occur3.

The opt-out system already applies in most European countries. This is the case in Spain, for example, the country with the highest organ donation rate in the world4. In 2020, England, Scotland, and the Netherlands switched from opt-in to opt-out5, as the opt-out system seems to ensure a better organ donation rate than the opt-in system6.

«Both systems can be criticized from an ethical perspective.»      Agata Ferretti

Alongside this encouraging finding, however, I think that both the current Swiss opt-in system and the opt-out system promoted by the new law can be criticized from an ethical perspective: ultimately, neither system guarantees the respect of individuals’ wishes in practice. In the absence of a clear will of the diseased person, both models shift the responsibility to call the shots to third parties (family members or the healthcare professionals applying the Federal law).

A duty to decide while permitting a change of mind

A third model would offer advantages here: a duty to decide ("mandatory choice")7. By this I imagine every Swiss resident being called to decide whether or not to be an organ donor. People would be required to register their will in the federal registry, for example when they turn sixteen years old (for citizens), or when they apply for a residence permit (for foreigners).

Someone might argue that, given the complexity of the topic, people need time to think about it and make an informed choice. I agree; the topic is difficult and postponing the decision may seem like the most straightforward thing to do.

Yet, it is important to consider that putting off a decision until it is too late is, in fact, a choice as well. Remaining forever agnostic on such a matter would mean walking away from our responsibility as individuals to be part of society and play an active role in it (e.g., by helping each other). Furthermore, it would result in putting family members and caregivers under unfair pressure: ultimately, they would carry the burden to decide something on our behalf, although it was not theirs to choose.

Also, in my view, to mandate a choice about deceased organ donation does not translate into a decision set in stone. Throughout life, people change, as do their view of the world and what they wish for themselves. Hence it is important to provide opportunities for people to learn more about postmortem organ donation and potentially change their mind.

Regardless of the model a country chooses to regulate organ donation, informing the public is key. Therefore, Switzerland should invest heavily in public information campaigns and outreach efforts in high schools. In addition, potential donors should be addressed with targeted communication strategies, while each and every Swiss residents should dispose of simple means to record their organ donation will (e.g., when renewing the ID card or residence permit, when applying for a driver’s license, via informing the local municipality, by filling in a living will, by obtaining a donor card). All this is important to empower and support people in such significant decision making.