Friday, January 17, 2020

Explicit Organ Consent

From the DW:
“German parliament: Explicit consent still necessary from organ donors”


Germany's parliament has rejected a Health Ministry proposal for a new organ donation system. With low donor numbers, the health minister wanted a presumed-consent system, with the onus on people to refuse to donate. Germany's organ donation rules will remain largely unchanged after an emotional debate in the Bundestag on Thursday morning. The country will stick with a system of informed consent, whereby only people who voluntarily register as organ donors are eligible. Most, but not all, EU members have moved to an opt-out system that presumes a willingness to donate.

Presumed vs. informed consent
Health Minister Jens Spahn, a Christian Democrat, had led the push to reform the system along with a Social Democrat, Karl Lauterbach. They had proposed a system of presumed consent, albeit also adding the chance for relatives to object to organ donations after the person's death. The motion failed by 292 votes to 397. A rival proposal, put forward by a group led by Green party lawmaker Annalene Baerbock, passed by 432 votes to 200, with 37 abstentions, in the decisive final vote. It advocated keeping the existing system of informed consent. However, in a bid to shorten Germany's transplant waiting lists, people will be asked when renewing their national identity cards if they'd like to donate organs.  After the defeat, Spahn pledged to enthusiastically implement the rival proposal, saying both plans had the same ultimate goal, even if they disagreed on the best method. "I hope I will be proven wrong and that we will indeed manage to significantly increase the number of organ donors [in this way]," he said. Karl Lauterbach, meanwhile, told DW he regretted his motion's defeat: "There's people dying on the waiting list every day ... The law will change literally nothing, it depends on people changing their minds while they get a passport. I don't know of anyone who reconsiders his position about organ transplantation while he gets a passport," he said. A third proposal from the AfD, based on a public information campaign to try to attract donors, never came to a vote once the second motion passed.

Why was the debate taking place? 
Germany's organ donation figures are doggedly low. More than 9,000 people are currently on the organ waiting list, while only 932 people last year agreed to donate, a reduction of 23 compared to 2018.  With 11.5 donors per million people, Germany's organ donation rate is almost three times lower than that of the United States, and more than four times worse than world leader Spain. Polls repeatedly point to a majority of Germans being in favor of organ donation, despite the low active sign-up rate. That comes as no surprise to Eugen Brysch, chairman of the German Foundation for the Protection of Patients (Deutsche Stiftung Patientenschutz). "For an opinion poll, you can quickly say yes or no," Brysch says. "But when you start thinking in detail about the issue, then you have to face some fears. Suddenly it's not abstract but rather all about yourself, and that always makes a big difference." Oliver Weber beat the odds of Germany's long transplant waiting lists. He received a life-saving new liver on March 22, 2012, then aged 47, after being diagnosed with the rare autoimmune disease primary sclerosing cholangitis (PSC).  Around 36 hours after the eight-hour operation, he vividly recalls waking up from the artificial coma: "It was a crazy feeling. I felt blissful, and full of energy." He refers to March 22 as his "second birthday" and celebrates both events together, as they fall just a few days apart. He's been an organ donor for years, but was in favor of the plan for a system of presumed consent.  "If somebody says they don't want to donate organs on ethical or religious grounds, then that's to be respected," Weber tells DW. "But I believe that most people don't think about it much ahead of time. [Presumed consent] doesn't take away the people's voice, it merely forces them to make a decision."

Politicians had free vote
As with all votes on purely ethical issues, politicians were free to vote according to their personal beliefs. Somewhat unusually, Thursday morning's emotional debate in the Bundestag saw party allies passionately advocating opposing positions.  Christian Democrat Thomas Rachel spoke against his government's proposal, asking the chamber: "Can silence be considered consent?" Meanwhile, the CDU's Gitta Connemann argued that a different fundamental question was in play: "Can the state demand a decision from its citizens? A decision for, or in this case, against, donating organs? That's all this debate is about. Of course it cannot force them to donate ... This is about life and death, and nothing is more important. A simple 'no' suffices." Other politicians drew on personal stories in their comments. The Left party's Kathrin Vogler alluded to a friend who had been on dialysis, hoping for a kidney transplant, for over a year. "She needs a transplant in the near future just to survive," Vogler said. "But she said to me: 'I'm an organ donor myself and have been for years. For me, it's a no-brainer. But it's also important to me that I can decide voluntarily. I do not want to be forced to go somewhere to put what I do not want on the record.'" Claudia Schmidtke (CDU) singled out a young man in the audience who had benefited from an organ transplant despite Germany's shortages. He became the first person in the country to receive a lung transplant from living donors eight years ago, when he was 11. Both his parents had donated parts of their lungs to save their son, Schmidtke said, concluding that the shortage had ultimately endangered three lives in his case.

^ Finally a country that has gone against the opt-out trend for organ donation. Opt-out is used because countries want to force people to donate their organs whether they want to or not and know that most people will not opt-out because they probably don’t even know that they have to. It is simply a way for countries to have control over your own body. Think of the response if a country said that every pregnant woman had to have an abortion unless they opt-out of it. It’s the same principle.  I believe in voluntary organ donation, but not forced organ donation like opt-out is. ^

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