The only easy decision about organ donation is registering as a donor

Amelia Rivera, 3, with her mother, Chrissy, and brother Nathan. There is more than one way to decide how to make transplant eligibility decisions. (Michael Bryant / Staff photographer)

No doubt the recent news of Amelia Rivera — a 3-year-old girl with Wolf-Hirschhorn Syndrome whose family is hoping to provide her with a kidney transplant — is an emotional story. Our hearts can’t help but go out the Rivera family. But should emotion be the key arbiter of decisions regarding organ donation?

At this very moment there are 72,395 people in the United States waiting for organs, but only 11,713 donors. In simplest of terms, organ donation is a textbook case of supply not being able to meet demand. The simplicity, however, stops there.

Decisions regarding who gets human organs and tissue are literally matters of life or death; and countries the world over struggle with complex ethical dilemmas regarding who lives and who dies. In “The Prostitute, the Playboy, and the Poet,” bioethicists George Annas describes a few approaches to making such decisions — none of which are perfect.

First is the market-based approach, which surely would have been a favorite of author Ayn Rand. Here, people can freely buy and sell organs with little government oversight. As noted by the Economist in an article about the issue, many nations embrace elements of this approach. For example, Iran is the only country that officially promotes the sale of human organs. According to this approach, the Rivera family could get their daughter a kidney if they could pony up the cash. The caveat to the market-based approach is one of equity: People who can afford organs get them, people who can’t, well, don’t. 

Next is the committee selection approach. In this approach, a small group of citizens are brought together to make decisions about who gets an organ based on “society’s values.” This method, also known as “The God Committee,” was (in)famously used at Seattle’s Swedish Hospital in the 1960s to make dialysis rationing decisions. If the committee selection approach were used, Rivera’s cognitive disabilities could in fact inhibit her from getting a kidney if the committee felt that it wasn’t in society’s best interests. The major shortcoming of the committee selection approach is that it is highly subjective: Society’s values are too diverse to be encapsulated in a decision made by just a handful of people.

Lastly, we have the lottery—or first-come, first served—approach. Here, everything is left to chance. Characteristics of the prospective organ recipient—such as disease severity, age, chance of healthy recovery—that would be considered in a rational decision making process are tossed to the wind. According to this approach, Rivera would get in line behind the rest of individuals awaiting a kidney. While fair, this method isn’t likely to get the most life out of each organ.

So what approach do we actually use in the United States? In short, the computer algorithm approach. According to the United Network for Organ Sharingthe private, nonprofit entity that manages the nation’s organ transplant system under the auspices of the federal government—factors such as tissue match, blood type, time on waiting list, extent of medical urgency, availability, and other factors are all weighed by a computer to determine who gets an organ when it becomes available.

Although the algorithm approach is pretty effective in avoiding ethical dilemmas, the most straightforward way to address the organ donation conundrum is to increase the number of organ donors; and thus close the gap between supply and demand.

According to Donate Life, 90 percent of Americans say they support organ donation, but only 30 percent know the steps it takes to become a donor. Even though the 86 million registered donors in the U.S. might sound like a good number, it equates to only 36 percent of the nation’s adult population.

Although becoming a registered organ donor literally saves lives (Pennsylvania, New Jersey and Delaware residents can do it here), many organs are unnecessarily lost because donors’ families and physicians aren’t aware of their wishes.

What do you think? Are you an organ donor? Why or why not? What factors should we consider when determining who gets an organ—and thus who lives and who dies?

Read more about The Public's Health.