Rethinking Organ Donation: When Altruism Isn’t Enough

By: Gali Katznelson

The demand for donated organs greatly outweighs the supply. In the United States alone, there are roughly 115,000 people waiting for an organ transplant. Every ten minutes, a new person is added to the recipient list, and every day, 20 people on the list die waiting. To be an organ donor in most states, residents can choose to add their names to the donor registry through a simple online or in-person process. But this “opt-in” system is failing to entice enough people to become organ donors. Currently, 54% of Americans are on the donor registry, but very few registrants are available to donate at a given time, in large part because the vast majority of registered donors have opted to do so posthumously. Better policies are needed to encourage more people to donate, both as living donors and as registered posthumous donors. It’s time to consider a non-monetary incentive system that prioritizes those who have signed up as organ donors.

Before jumping into an incentive-based system, let’s consider other options: namely “opt-out” and “mandated choice.” Following in the footsteps of 25 countries, including Spain and Wales, states such as Connecticut and Texas have made attempts to implement “opt-out” policies. In an “opt-out” system, each person is presumed to be an organ donor unless they explicitly choose not to be. Countries with opt-out policies have donor registration rates averaging 90%. But attempts to pass such legislation in the US have been met with fierce opposition. Likely, this is due to Americans’ unique emphasis on individual rights and skepticism of government control. Moreover, in such a system, family members may question the wishes of the deceased if they are unsure that the person was aware of the policy. In such cases, the family’s wishes will likely override the seemingly ambiguous wish of the deceased.

Alternatively, a “mandated choice” system is one in which people are faced with a compulsory choice regarding organ donation. In the US, Texas first tried this in the 1990s, where checking “yes” or “no” to organ donation became a condition for obtaining a driver’s license. Without adequate public education, 80% of people chose not to donate and the law was eventually repealed. More recently, Illinois experienced success with a mandated choice system. There, anyone receiving or renewing a driver’s license or an identification card is faced with the choice of becoming an organ donor. As a result, 60% of adults have now agreed to donate. This is a good start, but we can do better.

Opt-in, opt-out, and mandated choice all function under an assumption of altruism: that people donate their organs out of their own good will for the betterment of society. As far as the donor is concerned, this framework is the most ethically appealing. It ensures the autonomy of individuals to make choices without the potential harms that coercion would bring. In an ideal world, the desire to save lives by signing up – up to eight per organ donor – would suffice. Unfortunately, altruism alone has not mitigated the organ shortage. Measures that go beyond appealing to one’s good nature, such as incentives, are needed.

First, we might consider financial incentives. It is illegal to sell organs in the US, but financial incentives in the form of tax cuts or tax credits for living donors who have donated kidneys or segments of organs exist in states such as Massachusetts and Iowa. These incentives can be justified as a way to offset the costs of surgery and subsequent medical complications that a living organ donor may face. Yet these incentives don’t seem to work. One study showed no difference in live organ donation rates for states that introduced tax policies. Larger rewards, then, might seem like they could be more effective, but we should avoid considering monetary incentives so great that they would unduly influence vulnerable groups. Any incentive for organ donation must leave room for autonomous choice and not influence the decision in a coercive way.

One incentive that the United Network for Organ Sharing (UNOS), the American organ-managing organization, already implements is a prioritization system for live kidney donors. If someone has donated a kidney within their lifetime and later needs a kidney, UNOS will prioritize them on the list. Why not extend this policy further such that every person who signs up to be an organ donor (including posthumously) receives priority if they happen to need an organ while alive?

An independent non-profit organization called LifeSharers tried to do just that. People signed up, agreeing to direct a donation to members of this group in exchange for the assurance that if they needed an organ, they would have a potential advantage from its members. Think of it as an insurance program, but with organs. Some 10,000 people signed up, a quarter of whom had not previously registered as donors.

The outcome? Although UNOS allows for direct donations in circumstances where an individual knows of a person in need and would like to help a specific individual, they denounced LifeSharers for expanding this approach toward an entire group of people. LifeSharers was also criticized for allowing people to increase their chances unfairly by waiting on two lists. The organization shut down in 2016.

A way to overcome the unfairness of the dual system is to expand it on a national level within UNOS itself. This is what the government of Israel has done. In 2008, the country introduced a priority system, which contributed to an increase of the historically low rate of organ donationAfter potential recipients are prioritized by medical need, those who have  spent at least three years in an organ donor registry receive priority over those with the same need who are not registered donors. We should learn from the successes of this system and consider how rewarding individuals for donating might influence Americans to embrace organ donation more eagerly.

We should also learn from its challenges. In addition to prioritizing individuals for having signed up to donate, the Israeli system also gives points to first degree family members of the individual who has registered or who has donated posthumously. Rewarding the family for donating a relative’s organs is ethically contentious, as it may influence families to donate organs against an individual’s needs. Proposals for a priority system in the US should focus on rewarding the individual who chooses to donate rather than the family that has made the decision to do so on the person’s behalf. Another point to consider is that proposals for such a system will not come without controversy. In Israel, some groups called the law religiously discriminating. Ultimately, though, if an individual is unwilling to donate organs, it seems unfair that they should be willing to receive them.

Sadly, relying on people’s good nature has failed to generate the organs needed to save countless lives. Using the LifeSharers network, the Israeli system, and even its own priority system for live kidney donations as examples, UNOS should seriously consider ways to incentivize potential donors to register by prioritizing those who generously commit to saving the lives of others.