There has been a debate in Germany over who should decide what happens to a person’s organs – kidneys, liver, or even heart – when they die. The debate happened because the number of donors in the country is critically low, while there are thousands of people waiting for transplants. Every few hours, one of them dies.

The German health minister, Jens Spahn, proposed a new system last year aimed at cutting the waiting lists. He wanted to boost the low number of organ donors by changing from an “opt-in” system, in which people have to state explicitly that they are willing to donate their organs after death, to a system of “presumed consent”, meaning that they would have to have indicated explicitly that they did not want their organs to be donated.

The proposal was rejected by the German parliament in January, which means the system will stay as it is – people still have to decide in advance and state in writing that when they die, their organs may be removed and given to someone in need of a transplant. They can do this in a few ways, like filling out a donor card that fits into a wallet, or stating their intention clearly in a signed document, such as a will.

Germany differs from most EU countries

Several EU member states have already moved to a presumed consent system. The Netherlands Parliament passed a law in 2018, to come into effect this July, making every adult an organ donor after death unless they opt out. Spain has had an opt-out system for the past 40 years.

Germany‘s organ donation figures are strikingly low, with around 11.2 donors per million inhabitants. In Spain, the rate is four times as high. Last year, 932 people in Germany donated one or more of their organs to a person needing a transplant – mostly kidneys, as well as livers, lungs, hearts, pancreases and small intestines. Axel Rahmel, who heads the German Organ Transplantation Foundation (DSO), says “each and every organ counts and it can mean the difference between life and death for a critically ill person.”

A central body in the Netherlands, Eurotransplant, coordinates organ donations in Austria, Belgium, Croatia, Germany, Hungary, Luxembourg, the Netherlands and Slovenia. Germany does well out of this – it gets more organs than it donates. Still, there are about 9,500 people in Germany currently on the waiting list.

A sensitive issue among some refugees

From the age of 16, every insured individual in Germany is eligible to be an organ donor. That means that refugees and those migrants who are covered by regular health insurance are also asked whether they would like to become a donor. For some this can be a confronting question.

Hevin Jaafar, a refugee from Aleppo living in Germany, was shocked when the subject was first raised. “This is a very particular issue, and I feel that my body has been exposed,” the Syrian told InfoMigrants Arabic in December. The idea of death itself scares Jaafar, let alone organ donation. “People are free to do as they choose and I respect their opinion, but they should leave me alone.” Bilal, another refugee from Damascus, is also “completely against” donating his organs, even if it would mean giving life to someone else.

The decision was not an easy one for Media Mahmud, who received a letter from her health insurance company about organ donation. The 36-year-old mother from Syria says the idea was culturally foreign to her. When she spoke to her friends about it, many of them said they would not be prepared to donate their organs. But Mahmud did decide to become a donor in the hope that she might save the life of one or more people after her death. “When I signed the papers, I didn’t care who would get the organs, whether it would be a refugee or a German, a child or a woman,” Mahmud told InfoMigrants. “I just wanted to contribute to providing the opportunity of a life for others, no matter their color, religion or gender.” She also saw the move as an act of gratitude to the country that had taken her in and granted her protection.

Organ donation and religion

Advocates of organ donation regularly point out that none of the world’s major religions forbids it. But are you unsure about how your faith or beliefs may impact on your ability to become an organ donor? There is good information in English at the UK’s National Health Service. The NHS website offers advice about different attitudes toward organ donation. It also urges people to discuss the issue with their family, even if this is difficult because the subject may be considered taboo.

Why members of minority ethnic groups are needed

While there is an urgent need for more organ donors in Germany and elsewhere for people from all backgrounds, the shortage is even more of a problem for minority ethnic groups such as non-European-origin migrants. Many of these groups, including people of Syrian, Iraqi, Pakistani, Somali, and Eritrean descent, share a higher risk factor of developing diseases that require transplant, according to a Norwegian study in 2019.

In England and Scotland, which are moving to an opt-out system this year, the groups considered most at risk are black, Asian and minority ethnic communities. While some of these patients can receive a transplant from a donor with a different background, for many the best match will come from someone of the same ethnicity, with the same blood and tissue types.

Whether in the UK, Germany, Norway or the United States, the more people from diverse backgrounds who donate, the greater the likelihood of finding a match and the better the chance of a successful transplant.

Facts about organ donation in Germany

• Organs are not bought or sold – this would be trafficking, which is illegal – but since April 2019 it has been possible for the person who has received an organ transplant to send a thank-you-letter to the family of the donor.

• It is recommended that you discuss with your family whether you want to donate your organs and, if you do, it is best to carry an organ donor card (Organspendeausweis). This is relatively easy to order online, or you can download a PDF and print it yourself. You don’t have to have an organ donor card. A signed statement of your intention, or a provision in your will, is fine.

• If you have HIV or cancer, your organs will not be used. In other cases of illness, you may still be able to donate your organs.

• There is an organ donation telephone advice line in Germany: 0800 9040400

• Limited information is available in English on the German Organ Transplantation Foundation website