The register is a core element of an organ donation reform that the Bundestag passed in 2020. After this, however, it still applies that only those who have expressly agreed to this during their lifetime or if close relatives do so can be an organ donor. However, clinics repeatedly find that people who are considered as donors have not decided yes or no. Many relatives also feel overwhelmed in such cases and, when in doubt, apparently decide against releasing it. The new donation register is intended to help as many citizens as possible clearly document their stance and thus shorten decision-making processes. While organ donor cards can be lost, the online register should be available at all times. Federal Health Minister Karl Lauterbach (SPD) said that the register makes the work of doctors easier and, above all, relieves relatives of difficult decisions. He appeals to everyone: “Make up your mind and document your decision to donate organs.”
The process should be simple, voluntary and free. Like the organ donation card for download, the living will or the electronic patient file, the digital register located at the Federal Institute for Drugs and Medical Devices (BfArM) is intended to document the decision for or against organ and tissue donations. Consent is possible from the age of 16. An objection to a donation can be made from the age of 14. Once a decision has been filed, it can be changed at any time. Digital authentication procedures are provided for both entering and retrieving the declarations. On the part of the hospitals, specially designated doctors or representatives who are authorized to provide information should be able to access the digital register at any time.
No – the new organ donation register will start in several stages: From March 18th it will initially be possible to document your attitude at the Internet address www.organspende-register.de. The prerequisite for this is an ID card with online function and PIN (eID). By September 30th at the latest, those with health insurance should have another opportunity to access the register: entries and changes should then also be possible with the help of the Health ID. Insured persons receive this so-called digital identity via health insurance apps and their electronic patient files. The organ donation register was originally supposed to start on March 1, 2022, but there were delays – due, among other things, to the corona pandemic. In any case, the register will only be fully operational once the clinics have access.
Only later this year will clinics actually be able to access the register to retrieve stored declarations about organ removals. For data protection reasons, hospitals must first name people who will have access to the register (doctors and/or transplant nursing officers). By July 1st, all collection hospitals should be connected to the register and have named people authorized to access it. Clinics should be allowed to query data if the death of a possible organ donor has been determined or is likely to be imminent.
A tissue donation includes, for example, corneas and dermis of the eyes, bones, skin or blood vessels. In Germany, tissue donations – unlike organ donations – are organized decentrally. There are significantly more institutions, including non-clinical ones, that take part in the tissue donation process. The organizational and legal requirements for access to the central online register still need to be created for these institutions. It is therefore planned to only connect the officially approved tissue facilities to the register by January 1, 2025.
BfArM President Karl Broich said that stored declarations and personal data in the new organ donation register are protected from manipulation and unauthorized access. The data would be stored on a server in Germany. Secure authentication procedures would ensure that only the declarant and authorized hospital staff could access the declaration. The federal institute wants to publish the number of declarations recorded in the register annually.
Yes – in order to enable people without internet access to legally document their willingness to donate, the previous organ donor cards remain valid. Anyone who has filled out such an ID card in the past and now wants to deposit their declaration in the digital register should make sure that the declarations match. According to the Federal Institute BfArM, the most current declaration always applies. And in any case, it will continue to make sense in the future to talk to relatives about your personal decision and to inform them.
The German Foundation for Patient Protection criticizes access to the register as too complicated. The original plan was for citizens to also have access to it via the local authorities’ offices. However, this failed due to a lack of technical equipment in the offices and financing problems. Foundation board member Eugen Brysch argues that older citizens without internet knowledge should also have access to the register. Experts also expect that the registry will not lead to significantly more transplants. “Just because something can now be entered into a register does not automatically mean that more people are willing to donate organs,” said the Secretary General of the German Society for Surgery, Thomas Schmitz-Rixen. Instead, he called for the introduction of a “contradiction solution”: This would mean that every person would be a potential donor after death – if this was not actively contradicted.
Similar registers exist in several EU countries. It was introduced in Denmark in 2010. By the end of 2023, 28 percent of all people over 15 were registered there. Great Britain introduced an organ donation register in 1994, and the Netherlands followed in 1998. While registration is voluntary in Great Britain, it became mandatory in the Netherlands. Switzerland also had a register – but closed it again in 2022 due to its vulnerability to hacker attacks. There may be a new attempt in Switzerland later.
There was no increase in the number of organ donors in Switzerland until 2022. Even in the Netherlands, where an entry in the register indicating a yes or no to donation is now mandatory, the number of donors did not increase significantly.
In a survey by the opinion research institute YouGov on behalf of the German Press Agency, 71 percent were in favor of the online register – 39 percent were “fully in favor” and “somewhat in favor” were 32 percent. A total of 16 percent said they were “completely against” or “somewhat opposed”. 25 percent want to have a decision entered in the new register “definitely” and 10 percent want to have it entered “under no circumstances.” According to dpa, the results are representative of the German population aged 18 and over.