Explicit vs presumed consent: the Swiss referendum on organ donation

Demand for organs far outstrips supply: at the end of 2021, 1,434 people were waiting for a life-saving organ transplant in Switzerland; 72 people on the waiting list died before receiving one. © Keystone / Martial Trezzini

Each year dozens of people die waiting for a life-saving organ transplant. To increase the rate of organ donation in the country, legislators want to adopt a new definition of consent. Voters will have the final say on this sensitive issue in May.

What’s the referendum about?

Currently in Switzerland, it is only possible to remove organs from a dead person if they have explicitly given their consent beforehand. On May 15, voters will decide if they want to reverse this concept so that it can be presumed everyone consents to organ donation. Those who do not consent to organ donation must therefore have to express their preference while still alive.

Why the change?

The debate began with a popular initiative by a group of entrepreneurs from the French-speaking region of Vevey-Montreux, the JCI Riviera. The organisation wanted to get behind a project that would benefit society at large. The president at the time chose organ donation because a friend had been on the transplant waiting list for a kidney for several years.

Supported by doctors, politicians and associations specialised in organ donation, JCI Riviera collected the 100,000 signatures necessary to validate their initiative. The text called for the principle of the deceased consenting to organ donation to be written into the Constitution, unless the person expressed a desire not to donate while they were still alive. The aim of the proposal was to save lives and cut years off transplant waiting lists.

The Swiss government wrote an indirect counter-proposal to the initiative but with similar aims. One difference is the inclusion of the deceased person’s entourage in the decision-making process. An amendment to the federal law on organ transplantation would cover this change. Happy with the government’s project, the initiative committee withdrew its text. The people will vote on May 15 on this counter-project, which was approved by parliament.

What will the new law change?

Until now, organ donation has taken place under the principle of “explicit consent”: when a person dies, organs, tissues or cells can be removed only if the person gave their consent while still alive. Consent could have been given by informing their family, holding an organ donor card, or registering their wishes in their medical records. If the person left no instructions behind, the person’s entourage must decide on a course of action that would respect the person’s presumed wishes.

The new law aims to reverse this logic based on the “presumed consent” of the deceased. It starts with the assumption that everyone agrees to donate their organs. If someone is against the idea, they must express their preference while still alive. The law also includes a person’s close entourage in the process: in the absence of any clear indication, the family can make the decision while respecting the presumed wishes of the deceased.

Who launched the referendum?

A multi-party committee led by a midwife from canton Bern and a doctor from Winterthur collected the 50,000 signatures needed to submit the amended federal law on transplantation to a national vote. The committee includes lawyers and politicians from both the left and the right in German-speaking Switzerland.

Opponents of the new law believe that silence should not be considered consent, especially when it comes to the right to physical integrity guaranteed by the Constitution. They argue that an explicit “yes” should be necessary for any kind of medical intervention.

The opponents also fear the impact of the change on marginalised groups or foreigners, who may not have all the necessary information and therefore risk not taking steps to say no to organ donation during their lifetime. They are also critical of putting more pressure on the family of a deceased person, as they will have to decide on consent without necessarily knowing the person’s wishes.

“A rejection on their part will immediately be seen as a lack of solidarity,” the committee argues.

During the vote in parliament on the proposed law, a majority of members of the rightwing Swiss People’s Party and lawmakers from the Centre Party opposed the change on the grounds that “presumed consent” does not respect the right to physical integrity and self-determination. They argue that religious and ethical considerations were not sufficiently considered, and that doubt should not be interpreted as approval.

Who supports the law?

An overwhelming majority of lawmakers supported the changes to the law on transplantation proposed by the government. They believe that the introduction of presumed consent will help Switzerland increase the number of organ donations and reach rates of donation seen in other European countries.

The parliamentarians highlighted a paradox: nearly 75% of people in Switzerland say they are in favour of organ donation, but the refusal rate among families when confronted with the decision following a death is 60%. Often, in the absence of clear instructions, the family decides not to donate organs. The parliamentary majority thinks that moving to a system of presumed consent will reverse the trend and encourage families to agree to organ transplantation.

The broad consensus in favour of the counter-project stems from the fact that the proposal includes families in the decision-making process. Without an explicit indication, they can still oppose organ donation if they think this is what the deceased would have wanted. Organ removal also wouldn’t take place in cases of doubt or if the family cannot be contacted.

The government has also indicated that a national register will be created so that everyone can easily indicate their wish regarding organ donation. It plans to organise information campaigns to raise public awareness about the changes to the law.

What is the rate of organ donation in Switzerland?

In 2021, medical personnel transplanted 484 organs from deceased persons – the vast majority of them livers and kidneys – according to figures from Swisstransplant, the national foundation for organ donation and transplantation. In addition, 125 live organ transplants took place.  

But demand far outstrips supply: at the end of 2021, 1,434 people were waiting for a life-saving organ transplant; 72 people on the waiting list died before receiving one. The figures correspond to the average from previous years.

Switzerland lags behind several European countries in organ donation. Most of them follow the principle of presumed consent. Among the Alpine nation’s neighbours, only Germany – which adheres to the concept of explicit consent – has a lower rate of organ donation than Switzerland.

Translated from French by Sophie Douez