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November 11, 2014

Why people decide not to donate their organs

Daily Briefing

Each day, 21 people in the United States die waiting for an organ transplant—but increasing the rate of organ donation will require a cultural shift, Tiffanie Wen writes in the Atlantic.

Overall, about 45% of Americans are registered organ donors, but some states have much lower rates. For instance, only 12.7% of people are registered donors in New York, where 500 people died last year waiting for an organ, according to data from the Organ Procurement and Transplantation Network.

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Experts say there are many reasons why more people don't donate their organs. A literature review by researchers at the University of Geneva found that mistrust of the medical profession and confusion about brain death both dissuaded people from donating. For instance, a 2002 study in Australia found that some people would not donate an organ if they were brain dead but their heart was still beating.

Brian Quick, an associate professor of communication at the University of Illinois, says much of people's hesitance comes from a misunderstanding about how organ donors are treated by doctors. "There are a lot of people who subscribe to the belief that if a doctor knows you are a registered donor, they won't do everything they can to save your life," he says.

These misunderstandings can be reinforced by depictions of medicine in popular culture. For instance, Quick has conducted research which found people who regularly watch the medical drama "Grey's Anatomy" are more likely to "buy into medical mistrust."

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Other researchers say more people don't donate their organs because of the psychological discomfort of talking about death and intimate medical procedures. A 2011 study in Scotland found that people who didn't donate organs were more likely to report an "ick" factor, which researchers defined as "a basic disgust response to the idea of organ procurement or transplantation." 

Changing perceptions

Aisha Tator, executive director of the New York Alliance for Donation, says changing those cultural perceptions is key to raising the rate of organ donation. "Organized tissue donation should be a cultural norm like we did with bike helmet and seatbelt interventions," she says.

A more radical solution would be to emulate countries like Spain, which have an opt-out organ donation system instead of an opt-in system. However, Eamonn Ferguson, a professor of health psychology at the University of Nottingham, says it would be a mistake to oversimplify the reasons behind effective donation systems, like the one in Spain. "They have an opt-out system, but they also have a very coordinated, hierarchical, interlinked system of well-trained organ-transplant professionals," he says.

Israel has implemented a novel organ donation system, which prioritizes transplants for those who are donors themselves or have family members who have donated. The law was popularized via a marketing campaign called "Sign and Be Prioritized." Recent survey results suggest it has been effective, with the rate of deceased organ donation rising from 7.8 organs per million people in 2010 to 11.4 organs per million in 2011.

OrganJet transports patients to the next-available organ

“It's not just a dead-letter law. We've seen an actual change in how organs are being allocated," says Jacob Levee, director of the Heart Transplantation Unit at Sheba Medical Center (Wen, The Atlantic, 11/10).

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