Putting Organ Donors First

(The following is the text of a speech, as prepared for delivery, at a Cato Institute policy forum titled "Remedying the Organ Shortage: The Ethics of Market Incentives" in Washington DC on May 13, 2004.)

PUTTING ORGAN DONORS FIRST
by
David J. Undis

There is a simple, effective, ethical, and already legal way to reduce the organ shortage in America and make the organ allocation system fairer in the process. You can donate your organs to people who will do the same for you. You can tell everyone: “If you don’t agree to donate your organs when you die, then you will go to the back of the transplant waiting list if you ever need one of my organs to live. When it’s time to decide who gets my organs, I am putting organ donors first.”

A grass-roots network of organ donors called LifeSharers is making this a reality one member at a time. LifeSharers is a 501(c)(3) non-profit organization staffed by unpaid volunteers. Members agree to donate their organs when they die. Furthermore, they agree to offer their organs first to fellow members, if any member is a suitable match, before offering them to others. Membership in LifeSharers is free and open to all at www.lifesharers.com. LifeSharers is two years old, and currently has about 2300 members in 49 states and the District of Columbia, including about 300 children enrolled by their parents.

IS IT LEGAL?

The first question most people ask when they hear about LifeSharers is: “Is it legal?” The answer is yes. LifeSharers is a form of directed donation, which is legal in all 50 states, in the District of Columbia, and under federal law.

Most states have enacted a form of the Uniform Anatomical Gift Act which permits donation to “a designated individual” for transplantation needed by that individual. That is exactly what LifeSharers members do. We donate each of our organs to a designated individual, using language carefully crafted to conform to the UAGA’s directed donation provision. Specifically, every LifeSharers member says: “for each part of my body donated, I designate as donee that LifeSharers member who is the most suitable match as defined by the criteria in general use at the time of my death.” That means, for example, that I want my liver to go to the highest-ranked LifeSharers member on UNOS’ match run.

In a handful of states, donation to “a designated individual” is not permitted. In those states, LifeSharers members give their organs to their fellow member’s surgeon or hospital, which is permitted.

At the federal level, the OPTN “Final Rule” governs organ allocation policy. It explicitly permits directed donation. The section that lays out how organs are to be allocated concludes by saying: “Nothing in this section shall prohibit the allocation of an organ to a recipient named by those authorized to make the donation.”

Again, LifeSharers carefully conforms to the law. When a LifeSharers member dies in circumstances that permit recovery of their organs, LifeSharers provides their family with the names of individual LifeSharers members, if there are any, who need their organs. The member’s family then directs donation to these named individuals.

WILL IT WORK?

So, LifeSharers is legal. Can it really reduce the organ shortage in America? Again, the answer is yes.

We don’t need medical breakthroughs to reduce the organ shortage. All we need is behavior change. Only about 30% of Americans have signed up to donate their organs when they die. And Americans donate only about half of the organs that could be transplanted. They bury or cremate the rest.

Dr. Thomas Peters, director of the Jacksonville Transplant Center in Florida, has estimated that if the consent rate from suitable post-mortem donors was raised to 85%, everyone currently on the transplant waiting list could get a transplant within three years and newly listed patients could get transplants much faster.

We can get there by giving Americans an incentive to donate their organs when they die. LifeSharers creates such an incentive, and it is a powerful one. That incentive is preferred access to the organs of all our members. Simply put, LifeSharers gives you a better chance of getting an organ if you ever need one. When you consider that more than half of the people who need an organ transplant in the United States die before they get one, the chance to move up the waiting list, even just a little, can literally mean the difference between life and death. Donating your organs after you die is a small price to pay for a better chance to get an organ if you ever need one to live.

As the number of LifeSharers members grows, so does the incentive to join if you are not already a member. Consider, for example, what it will be like when LifeSharers has a million members. You’d be crazy not to join. If you didn’t, you’d give up preferred access to a million livers, two million kidneys, a million hearts, two million lungs, and more. That’s a powerful incentive to join LifeSharers. And that incentive can put a big dent in the organ shortage in America.

IS IT ETHICAL?

So, LifeSharers is legal, and it will work. But is it ethical? Again, the answer is yes.

The ethical argument for putting organ donors first is clear. As long as there is a shortage, those who haven’t agreed to donate their organs when they die should not be at the front of the waiting list when it’s time to decide who is going to live. Putting organ donors first makes organ allocation fairer.

Professor David A. Peters agreed, in a 1989 paper in the Journal of Law and Health. He wrote: "...under conditions of scarcity...justice demands that those who have consented to be posthumous organ providers, i.e., those who have fulfilled the moral duty to consent, be given first priority access to the cadaver organ pool in the event of need.”

Some say organs should be given to those who need them most, even if they haven’t signed a donor card and even if they’ve refused to sign one. This idea ignores a simple fact. The only alternatives to donating your organs are to bury them or burn them, so failing to donate them is a spectacularly selfish act. It boggles the mind to suggest that anyone who would throw away an organ that could save someone else’s life deserves an organ just because they need one.

Professor Michael Booker put it this way: "The right to receive a donated organ should be tied to the duty to donate organs...It is wrong to consider organ donation to be an act of altruism to be engaged in at one’s whimsy but to consider organ transplantation to be an inalienable right...Individuals who are willing to donate organs should certainly receive priority in the allocation of organs, since they alone can be said to deserve available organs.”

Organ donation is perhaps the greatest gift anyone can give or receive. It is literally the gift of life. Why give that precious gift to someone who won’t do the same thing for others? Why reward someone who is too lazy, too selfish, or otherwise unwilling to share the greatest of gifts?

Imagine a heart is available for transplant. Imagine that two people are a good match for the heart: Mr. Donor, who has committed to donate his organs when he dies, and Mr. Keeper, who has not. Given that there is a shortage of organs, should we treat Mr. Donor and Mr. Keeper as if there is no ethically relevant difference between them? No. Mr. Donor should get that heart, even if Mr. Keeper is sicker or has been waiting longer. Giving the heart to Mr. Donor serves the cause of justice.

Perhaps more importantly, rewarding Mr. Donor’s decision to donate his organs encourages others to do the same. That saves lives. On the other hand, giving that heart to Mr. Keeper encourages others to delay signing donor cards or to refuse to sign them, and that lets more people on the transplant waiting list suffer and die.

There is another aspect to this issue that is important – what about the wishes of the donor? If a person wants to give his organs to people who have agreed to do the same for him, is it ethical to ignore or override his wishes and give his organs to someone else? No, it is unethical. It is also counterproductive, because it causes fewer people to donate their organs, and that causes more suffering and more death.

Imagine you wanted to give a bag of groceries to a homeless person. Then imagine an “expert” criticized your decision, saying that he should decide who gets the groceries, and that they should go to a different homeless person across town. How intrusive, and how bizarre! It’s just as intrusive, and just as bizarre, when experts tell you they should be the ones who decide who gets your organs when you die.

UNOS CONCERNS

So, what does UNOS have to say about LifeSharers? Well, UNOS has expressed appreciation for our interest in promoting organ donation, but has raised some concerns.

First, UNOS says LifeSharers “creates a class of ‘LifeSharers members’ for special consideration in organ allocation.”

LifeSharers does create a class for special consideration in organ allocation, and it’s about time somebody did. Organ donors deserve special treatment in organ allocation, but they haven’t been getting it.

As for LifeSharers members being a class, note that it is a class that anyone can join for free. LifeSharers does not discriminate on the basis of race, color, religion, sex, sexual orientation, national origin, age, physical handicap, health status, marital status, or economic status. We welcome everyone, and we exclude no one.

Next, UNOS says LifeSharers “undermines the current framework for organ allocation” which, they say, “is predicated on clinically-relevant considerations, not personal characteristics.” First, increasing the number of organs to be allocated does not undermine the allocation system, it enhances it. Second, non-clinical considerations already play a central role in organ allocation. Race, geography, and ability to pay are just some examples. So is status as a live donor. UNOS moves live donors up the waiting list if they ever need an organ. LifeSharers is just doing the same for people who agree to donate when they die.

But even if the current allocation system was based totally on clinical considerations, it wouldn’t be as good as a different system that saved more lives.

The third concern expressed by UNOS is that LifeSharers members would accept organs from any donor, while preferentially restricting their donation to members. This means, according to UNOS, that “LifeSharers creates an imbalance by creating an open system with regard to receiving an organ, but a closed system where donation is concerned.”

LifeSharers doesn’t create an imbalance, we correct one. About 70% of all transplant organs go to people who haven’t agreed to donate their own organs when they die. LifeSharers helps organ donors get their fair share of organs. By increasing the supply of organs, we also help non-donors in the process.

And LifeSharers is not a “closed system where donation is concerned.” It is exactly the opposite. Anyone can join, it only takes about two minutes, and it’s free. Sure, we’ll accept organs from any donor. We’d be crazy not to. And yes, we do donate our organs first to fellow members. That’s how we create the incentive to be a donor. That’s how we increase the supply of organs available even to non-members.

But consider the group that is closed and does create an imbalance. These are the LifeHoarders, the people who will accept organs but refuse to donate them. It is the imbalance created by LifeHoarders that needs correcting. That’s exactly what LifeSharers is doing.

LifeSharers deserves UNOS’ support, not its opposition. Will more Americans donate their organs if UNOS says they can’t donate them to other organ donors, or will fewer donate? The question answers itself.

UNOS SHOULD PUT ORGAN DONORS FIRST

Beyond just supporting LifeSharers, UNOS should implement the LifeSharers approach as its own. By doing so, UNOS would slash the organ shortage a whole lot faster than LifeSharers will.

A simple thought experiment shows this clearly. Imagine that UNOS made the following announcement tomorrow: “Beginning January 1 of next year, no human organ will be made available in the United States for transplantation into any person who is not registered as an organ donor. The only exceptions will be directed donations and cases where no registered organ donor can be found to match an organ that is available.”

This announcement, along with the publicity it would generate, would cause people to register as organ donors in droves.

Rupert Jarvis agrees. He suggested in a 1995 Journal of Medical Ethics paper that only those who identify themselves as willing donors be eligible to receive organs. He wrote: "It hardly seems fanciful to suggest that the vast majority of people would elect to join the scheme, since it is so clearly in their interests to do so, with the potential gain (life) being infinite and the potential loss (postmortem dissection which…they might well have to undergo anyway) being zero."

Professor Alex Tabarrok also agrees. He has suggested that UNOS enact a “no-give no-take” rule. Here’s what he says would happen: “if the only way to get an organ is to have previously signed an organ donor card, then many more people will sign their organ donor cards, and the shortage will be alleviated.”

It would be simple for UNOS to put organ donors first. UNOS could simply add a field to its waiting list database to show whether or not each potential organ recipient is a registered organ donor. Then when an organ becomes available, instead of offering it first to the highest-ranked person on its match run, UNOS could offer it first to the highest-ranked registered donor.

No Congressional action is needed for UNOS to put organ donors first. UNOS has the authority to change its organ allocation rules to give organ donors preferred access to organs. The UNOS Ethics Committee acknowledged this fact in its 1993 white paper on “Preferred Status For Organ Donors.” They wrote: “a trial could be implemented without requiring any alteration in existing legislation.”

In fact, as I’ve already noted, UNOS already moves live donors up the waiting list if they ever need an organ. UNOS can, and should, do the same for people who agree to donate when they die.

CONCLUSION

Putting organ donors first can save thousands of lives a year, and make organ allocation fairer in the process. Nothing could be simpler, nothing could be fairer, and nothing is stopping us from making it happen.

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