Working Group Proposes Path for Organ Donation Incentives, but Controversy Continues

Coleman, Matthew

doi: 10.1097/01.NEP.0000413838.27187.c1

It is irrefutable that the supply of kidneys for transplantation has not kept pace with the increasing demand. Where the controversy lies, though, is in how to narrow this gap.

One particularly polarizing suggestion has been the adoption of incentives for organ donation. The sale of human organs currently is illegal in most countries, including the United States.

While the debate over an incentive system has been going on for about three decades, the Working Group on Incentives for Living Donation recently took the discussion a step further, not only expressing support for such an approach but proposing standards and guidelines for what they describe as an acceptable framework.

“While not intended as definitive, we suggest that any system that conformed to the proposed guidelines would meet the standards, which both supporters and opponents of incentives could agree are necessary (if not sufficient) for any system of donation and are consistent with the standards that we have developed for current conventional donation,” the Working Group wrote in a meeting report published in the American Journal of Transplantation (2012;12:306–312).

The manuscript was based in part on open discussion during a meeting about “Incentives for Donation” in Manila, Philippines, Nov. 7–8, 2010. Arthur Matas, MD, Professor and Director of the Renal Transplant Program at the University of Minnesota, was the lead author.

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Removing Disincentives

The proposed standards begin with the removal of disincentives to donation, meaning that “donors (or donor families) should suffer no short- or long-term financial burden as a consequence of organ donation,” the Working Group wrote.

“At a minimum, this would entail reimbursement of expenses and lost income, along with provision of term disability insurance, term life insurance, and care of donation-related complications.”

The idea of removing disincentives is widely accepted.

“I think the entire transplant community would agree with that,” said William Harmon, MD, Professor of Pediatrics at Harvard Medical School and Director of Pediatric Nephrology at Children's Hospital Boston.

“Such programs do exist in the US to eliminate disincentives. There are voluntary programs by employers to give paid leave to employees who are organ donors; this is certainly true for the federal government, and many state governments do this for employees. Hopefully if we can remove some of the financial disincentives, we can maximize living donation.”

But removing disincentives may not be enough, Dr. Matas said.

“Everyone believes we should remove disincentives, and to me that's a nonissue. The question is, is it sufficient, and do we want to wait ten years to find out if it's sufficient?

“I've been listening to arguments over the last 30 years of ‘let’s just try one more thing,' and it is not that little bits and pieces haven't helped, but I'm worried that the problem of lack of donors will just get that much worse.”

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Defining Incentives

The system envisioned by Dr. Matas and colleagues would ensure respect for the autonomy of the donor (or donor family), informed consent of the potential donor or family, the promotion of donor health at every step, and the expression of gratitude for the act of donation, they wrote.

Donor risk would have to be in line with currently accepted standards, and donation should be anonymous and nondirected, with the organ allocated to the first person on the list.

In terms of particular incentives, those should be determined by individual governing bodies and provided by the state or a state-recognized third party.

“For deceased donation, it would need to be decided if the plan should include pre-death benefits (which has the disadvantage that many receiving benefits would not be able to donate at the time of death), an incentive for registering as a donor where the benefit only accrues in the event that the signatory actually becomes a donor, or simply to provide benefits (e.g., funeral expenses) at the time of donation,” Dr. Matas and colleagues wrote.

“For living donation, in addition to removal of disincentives, benefits could include (but would not be limited to): long-term health care, tax credit, tuition, or job training; provision of a job; or payment (which could be a small payment and then additional annual small payments when returning for follow-up visits).”

While the particular incentives may vary from one geographic region to another, there is a constant—the incentive should be designed to improve the life of the donor.

“We have stated in the article that in any one country there needs to be a fixed value to the incentive—it can't be more for one person and less for another—but it doesn't have to be the same incentive,” Dr. Matas said. “We may value different things—there needs to be a menu of items.”

Each country will also need to put in place guidelines for donor evaluation and selection, as well as for oversight of the system.

Although regulation and oversight must be accomplished on the national level for political and legislative reasons, the incentive system would have to be transparent so that countries could keep an eye on one another.

“I don't think this system will eliminate our current conventional donation,” Dr. Matas said. “There are lots of people who donate without a financial incentive, and there will be people who will continue to donate without financial incentive.”

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Potential for Corruption

The proposed standards and guidelines assume a situation that doesn't exist, said Gabriel Danovitch, MD, Medical Director of the Kidney and Pancreas Transplant Program at UCLA.

“There are many problems with this thing. I think it would be a disaster. They talk about a world where you would have careful government evaluation and checking. Look at China, India, and Latin America, parts of the world where corruption is rife. It would inevitably lead to exploitation of people.”

Dr. Danovitch is also concerned about the potential for donors to conceal medical comorbidities in an incentive system.

“The current situation works on trust because everyone wants everyone to do well,” he said. “Money is not the issue. But the moment you get money involved, you can't necessarily trust what people will tell you.”

Another issue is what would be the exact incentives, Dr. Danovitch added.

“This needs to be something real. No one will do this for $500. Let's say someone said, ‘Let's give them college tuition.’ Do you want to live in a country where in order to go to college if you're poor you have to give up a kidney?”

Those in control of the incentive system would focus on maximizing profits, Dr. Harmon said.

“They would try to minimize what they are giving to donors and maximize what they are charging to recipients.

“I think that this is true in every market-driven interaction that exists; that's the basis of the market. If there is a profit somewhere, there are going to be people who are trying to take advantage of it.

“Functionally, what they describe doesn't exist.”

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Testing a System

Financial incentives for living kidney donation bring up three major ethical concerns, said Peter Reese, MD, MSCE, Assistant Professor of Medicine and Biostatistics at the University of Pennsylvania.

“The first is undue inducement, the second is unjust inducement, and the third is crowding out.

“Undue inducement: Everyone has their price to some degree, and one concern is that people will essentially ignore risk if the inducement is too large.

“Unjust inducement: If you offer a lot of money, then the poor and vulnerable may be the ones who are really affected by incentivized donation, and others won't be. It would not be fair to set up a system in which only the poor and vulnerable are the ones who provide this benefit and take risk.

“Crowding out: If you change the conversation about donation from it's a gift to it's a financial transaction, then people who donate under current circumstance with an element of altruism may say it's not worth giving a kidney, so they will stop doing it, and you will have a perverse decrease in unpaid donations.”

Still, an incentive system is a worthwhile idea that should be tested in the United States, Dr. Reese said.

“There are so many important things to learn,” he said. “How many people would come forward, who would they be, and how many would be deemed inappropriate for psychosocial reasons or for poor health?”

That information could help inform this divisive issue.

“If you don't have a study and any actual data, sometimes you go with the person who argues the best, and, personally, I think this debate has been frozen without any novel insights or data for a matter of years,” Dr. Reese said. “I don't see us being able to satisfy any of these ethical concerns any further without doing a trial.”

Dr. Matas and others have a framework in mind for such a test.

“I think it's easy,” Dr. Matas said. “The US is broken down into organ procurement organizations [OPOs]. They are well-defined and exist for deceased donor retrieval and allocations. You can have an OPO test this with a limited number of donor and recipients receiving potential incentives.”

Before such a test could be conducted, of course, bans on financial incentives for organ donation would have to be lifted.

“The question becomes, when will enough people agree that everything else hasn't provided what's in the best interest of patients?” Dr. Matas said.

© 2012 Lippincott Williams & Wilkins, Inc.