In the struggle for more urgently needed organ donations, a new instrument is now belatedly to be launched: a central database. How is that supposed to work?
Organ donations can save lives. But every year thousands of seriously ill people in Germany are on waiting lists to receive a kidney or a new heart. According to surveys, a large majority of people generally have a positive attitude towards organ donation after death. Many people keep putting off making a specific decision – whether for or against it – or don’t put it in writing.
Today, with some delay, a central register is to be launched that also offers a digital option.
What exactly is it about?
The register is part of a law that the Bundestag passed in 2020 following an initiative by a group of MPs led by today’s Foreign Minister Annalena Baerbock (Greens). The aim is to “strengthen the willingness to make decisions regarding organ donation”.
To achieve this, more regular food for thought should be organized – and also easier ways to document a decision. Anyone aged 16 or over applies for an identity card, extends it after ten years or obtains a passport should receive information material in the office. If necessary, family doctors should inform patients about organ donations every two years.
How does the register work?
The portal www.organspende-register.de is set up at the Federal Institute for Drugs and Medical Devices. It will go into operation gradually: From today on, you should be able to register there using an ID card with an online function (eID). In the second step on July 1st, clinics that remove organs will be able to search for and access declarations in the register. By September 30th at the latest, it should be possible to register more easily via health insurance apps. The register was actually supposed to start on March 1, 2022, but there were delays due, among other things, to the Corona crisis.
What is the purpose of the online declaration?
You can also document a decision on a piece of paper, in a living will or on organ donor cards, which are available in offices, practices, pharmacies and can be downloaded from the Internet. But papers can get lost or not be found in an emergency. An entry in the register ensures clarity and security, argues Health Minister Karl Lauterbach (SPD). This makes it easier for doctors to quickly and reliably clarify whether they are willing to donate.
“Above all, it relieves relatives of having to make a difficult decision in an emergency.” If there is no declaration from the deceased, spouses, adult children or siblings will be addressed.
What exactly can you specify in the register?
You can register voluntarily from the age of 16. You can choose from five options:
“Yes, I allow organs and tissues to be removed from my body after my death has been confirmed by a doctor”;”Yes, I allow this, with the exception of the following organs/tissues”;”Yes, I allow this, but I only want certain organs /release tissue for donation”;”The following person should then decide whether or not”;”No, I object to the removal of organs or tissues”.
Entries can be changed or deleted. The general rule for declarations, whether on paper or digitally, is that the most recent one always applies.
How does the register work technically?
Things are not as easy with the official register as with online shopping. In order to be able to make entries, in the first phase you need an ID card in credit card format with an activated online function – according to the Federal Ministry of the Interior, an estimated 51.4 million of these were in circulation at the end of 2022. You also need to have an NFC-enabled smartphone or tablet for wireless data exchange or a card reader for a computer. The data is on a server in Germany, according to the federal institute. Authentication procedures ensure that only the declarant and authorized clinical staff can access entries.
What is the situation with organ donations?
Last year, 965 people donated one or more organs after their death. That was 96 more than after a sharp slump in 2022, as the coordinating German Organ Transplantation Foundation reported. At the same time, almost 8,400 people were on the waiting lists for a transplant.
The number of organs removed rose by 8.1 percent to 2,877, namely 1,488 kidneys, 766 livers, 303 hearts, 266 lungs, 52 pancreases and two intestines. In order for organ donations to even be an option, two specialists must independently confirm the complete and irreversible failure of the cerebrum, cerebellum and brainstem, i.e. brain death.
What’s next?
It remains to be seen to what extent the register is known and used. In general, according to a survey by the opinion research institute YouGov, there is broad support. According to this, 71 percent are in favor of such a portal. 25 percent definitely want to enter a decision they have made in the register; 31 percent said yes at least. 13 percent said no to it, and definitely not 10 percent.
The German Foundation for Patient Protection, however, complained that a citizen-oriented registration option that was actually set out in the law was missing: directly in the ID card offices. There are no data protection secure computer terminals in any passport office, said board member Eugen Brysch.
What about the general rules for organ donation?
A very fundamental discussion continues to smolder. Because with the register law passed in 2020, organ donations are only permitted with express consent. The more moderate reform prevailed in the Bundestag vote against a more far-reaching initiative. Accordingly, all people should automatically be considered organ donors unless they object.
Lauterbach campaigned for this as a member of parliament at the time – and in 2023, given the drop in donation numbers from the previous year, he spoke out in favor of a new attempt in parliament. Patient advocate Brysch warns that the objection solution should not be forced through the back door because of delayed implementation of the register.