Transplantations: An organ donation register should fix it

Germany has a problem with organ donations: there are too few in all important categories. Almost 8,400 people are waiting for a new organ, most of them, around 6,500, for a kidney. However, the German Organ Transplantation Foundation (DCSO), which accompanies every organ removal in Germany, only recorded a total of 965 donors in 2023. For years, solutions have been sought to not only increase the willingness to donate, but also to ensure that this is documented in a binding manner.

The next attempt will be to activate the new organ donor register this Monday. The aim is to record those who are willing to donate an organ or tissue more precisely than before. Citizens can document their stance on the topic via the portal www.organspende-register.de. It’s not that simple: First, you have to authenticate yourself using the eID function on your ID card. The first interested parties will certainly get out here. You could try again from July and then use your health ID from the statutory health insurance companies for authentication. However, privately insured people would not be reachable in this way.

However, there have been delays in the preparation of this data collection for a long time. The decision to introduce the 2020 register was actually supposed to be implemented in March 2022. In the summer of 2022, the Ministry of Health cited IT security problems and the complexity of the task as the causes of the delay.

So far, the “extended consent solution” is valid in Germany, and it remains so with the register. For the removal of organs after a person’s brain death, the active consent of the person affected during their lifetime, a close relative or a representative is required.

From the perspective of doctors from various disciplines, the new register does not help more people decide to donate organs. These could only be achieved with increased information and educational work. This is one of the key points in the law that was also necessary for the establishment of the register – the residents’ registration offices and general practitioners should do it. However, both seem hardly practical: the offices already have enough to do, applicants are happy when they have caught one of the rare appointments and can take a new document home. The family doctors, on the other hand, are overloaded with tasks and have so little time for individual patients that a discussion about organ donation is unlikely to be the norm during consultations.

With regard to the experiences with registries in other European countries (for example in the Netherlands, Denmark, Great Britain or Switzerland), Thomas Schmitz-Rixen from the German Society for Surgery explained: “We need nationwide and multilingual educational campaigns for this.” However, the organization prefers a combination of explanation and objection solution because the consent solution was unsuccessful. If an objection is resolved, all people are automatically considered ready to donate organs – unless they object. Only with such a regulation would a register make sense, explains Dirk Stippel, Head of Transplantation at the University Hospital of Cologne: “With a consent solution, such a register is more of a bureaucratic obstacle.”

Further delays in the use of the register seem certain: not all collection clinics are connected at the start, and it is recommended that you continue to carry your organ donor card with you for the time being.

One of the advantages of the register could be that if relatives cannot find an organ donor card, they can gain certainty about the wishes of the deceased. “In practice, the lack of knowledge about the decision to be willing to donate an organ is a burden for the relatives,” says Felix Braun, transplant officer at the University Hospital Schleswig-Holstein.

A somewhat lukewarm hope for the new register is that its launch could be a reason for many people to start thinking about the issue at all. This expectation could be deceptive: This is suggested by the known difference between the proportion of those who are willing to donate in principle and the significantly lower proportion of those who have documented this on a donor card and also carry it with them.