Organ Donation via Internet Raises Ethical Concerns: An Expert Interview With Arthur L. Caplan, PhD

Laurie Barclay, MD

October 22, 2004

Oct. 22, 2004 — Editor's Note: The first kidney transplant arranged through a Web site was initially postponed on Oct. 18, then allowed to proceed on Oct. 20 at Presbyterian/St. Luke's Medical Center in Denver, Colorado, highlighting the need for ethical guidelines governing this type of organ brokering.

Rather than using the United Network for Organ Sharing, a nonprofit organization working with organ transplant centers to facilitate transplants, the donor and recipient connected through the Web site, and had not met face to face until shortly before the procedure. To be listed on this Web site, potential recipients pay $295 per month to advertise their need of a donor organ and to post a biography and photos, in hopes that those browsing the site might wish to donate an organ for transplantation.

This unusual arrangement of live stranger donation brokered through a Web site led hospital officials to postpone the transplant until they ascertained that the organ donation was ethical and that neither the company nor the donor benefited financially from the transplant. On Oct. 19, the Presbyterian/St. Luke's Medical Center's Clinical Ethics Committee met to evaluate concerns the transplant team had expressed regarding this means of procuring a kidney for transplantion.

Another Internet group involved in connecting individuals regarding transplantation is LifeSharers, in which members sign up and agree to donate organs to each other if needed.

To learn more about the ethical questions raised by these situations, and the need for policy guidelines in the future, Medscape's Laurie Barclay interviewed Arthur L. Caplan, PhD, the Emanuel and Robert Hart Professor of Bioethics at the University of Pennsylvania in Philadelphia. Dr. Caplan is also chair of the department of medical ethics and director of the Center for Bioethics at the University of Pennsylvania.

Medscape: How can we prevent lack of veracity from potential recipients who might want to exaggerate their biographies or to mispresent themselves?

Dr. Caplan: Right now there are no rules, no requirements, and no penalties. One problem with a private broker matching donors and recipients is that they don't have the ability to enforce any more rules for a kidney donor or a kidney recipient than they do about someone describing themselves as looking for a date on the Internet. One of the problems with private brokering is that you can't enforce truthfulness. In fact, to some extent, private brokers on the Internet don't have an incentive to ensure that participants are truthful. They want to get customers, so they're not going to be all that tough in screening them.

Medscape: How about the potential donors — are they screened in any way?

Dr. Caplan: No. Yet again, the donors could be not telling the truth about their health. They could plan to try to extort something from the recipients, most likely money, either before or after the transplant. The greatest concern to me is that there isn't any screening going on of their psychiatric and psychological stability. I do believe there are altruistic people out there who want to donate a kidney just to help, but there are also a lot of people out there who are depressed, who have low self-esteem, and who suffer from mental illness, and they are going to come forward too.

Medscape: At this point, is anybody screening the donors once they contact the recipient and offer their organ for transplantation?

Dr. Caplan: In this area we have had a fairly extensive experience with living donors recruited from family members, and occasionally from friends. But donation from complete strangers is not an area where much has been done in terms of setting out guidelines for how to evaluate them — whether or not you have to follow up with these people, who pays if something goes wrong in terms of complications or even a death, how you guarantee their expenses are paid, and how you police them to make sure that they're not getting money on the side. None of those issues have been addressed. I'm not against stranger donations, but what we're seeing is a company that is running into an empty market spot to recruit living strangers, and the field hasn't set its rules.

We have a paper coming out in Clinical Transplantation sometime in December or January reporting on a meeting we held about a year ago on ethical issues and live donations, because we thought there was a real need to set out some of these rules, and I guess we were right! We discussed guidelines and suggestions about stranger donation, including setting up a standard psychiatric and psychological examination, and a built-in waiting period. You absolutely have to guarantee the donor that you're going to pay their expenses. You need to appoint a donor advocate who's independent, who doesn't get paid according to how many donors donate, to advise prospective donors. You have to have a registry to follow the donors to know what happens up to five years later to see if they are happy or sad with what they did, so you can tell other people. So there are a number of things that need to be done.

Medscape: To what degree can you prevent possible extortion, and how would that be done?

Dr. Caplan: You can never completely prevent anybody from doing something criminal. But it would be nice if you set out standards and said you have to undergo the interview, you have to sign statements that you won't extort, you have to promise that you're not going to get paid beyond expenses, you have to promise perhaps not to have any contact with recipients or their families unless you have their permission. There are a number of ways you could minimize extortion, but you can't prevent it.

Medscape: Are there other, more subtle forms of emotional extortion that could be a concern, like a potential donor wanting almost to be adopted into or accepted by the family of the recipient?

Dr. Caplan: This situation is somewhat similar to that of a mother who literally does give her baby up for adoption and then tries to reappear in the family.

Medscape: Are there issues regarding fairness and equality of opportunity for the overall pool of potential transplant recipients?

Dr. Caplan: The major issue with is that by having a private broker or middle man, you're favoring those who can afford the fees and those who have access to the Internet, and not everybody does. You're also favoring those who are willing to, in a sense, plead their case in public. Some people just won't do that — they're just shy, more reserved about that. So I favor a government-run matching site, where transplant centers list their people and you look for stranger donors. In a way, perhaps that's fairer than having somebody step in and say, "If you give me $300 a month, I'll make you look good on the Internet."

Medscape: Do you think it's almost like a popularity contest, because it favors those who are more attractive or more appealing?

Dr. Caplan: Yes, and people will in fact try to make themselves seem more popular without any regulation or template. I wouldn't be surprised if people were hiring professionals to write their descriptions to make them more attractive.

Now this whole scenario is not to be confused with the thin guy on the billboards asking for cadaver donations. This is all about live donors. Cadaver donations and directing the organs to someone specific has its own issues, but the main difference is that with live donation you can bring the donor and the recipient together at the time you want to do it. You're not going to lose organs by having somebody pick the recipient, so to speak, because you know in advance whether they are compatible and whether it's going to work. With cadaver donation, you have no idea until you try to find compatible recipients. While you're looking for a suitable recipient, you can be wasting time, losing organs and losing lives.

Medscape: How do you feel about the group called

Dr. Caplan: Again, I think it's nice — there's nothing wrong with saying I'm going to help you if you help me. But the chance of finding a match requires literally hundreds of thousands, if not millions of members, and basically you're back to the system that we have, which is sign your donor card. If you do that, there'll be an organ for you if you need one. So it's hard to give priority in any real way, because it's tough to get blood, size, and tissue matches and geography together. You need big numbers, and with the numbers they have, the odds of a donor finding a recipient more than once in about two years are tiny.

Medscape: Is there anything you would like to add?

Dr. Caplan: One other problem with Matching — again, I'm not against stranger donations, I'm not even against the principle of doing this, but I wonder if it's going to be a flash in the pan. I think that people will be drawn to it for a while, and it may even spawn some imitators. But in the long run, if everybody is up on the Web pleading their case, then the total effect in terms of finding a stranger to help you is a lot less. Eventually it becomes old hat. It's exciting now, like look at these people begging, but the media will get tired of it and people won't go to the site. It's not a long-term solution. You really need to have more of a systematic, government-subsidized effort, otherwise I think it will burn out after a while.

Medscape: Should the government-subsidized effort be directed at education to promote organ donation, or toward other areas?

Dr. Caplan: Both. There's no reason that the efforts now to promote organ donation, which are efforts by foundations like the Kidney Foundation or the United Network for Organ Sharing, or the organ procurement organizations, shouldn't extend to look for living donors. You just have to give them that authority, because they don't have it now. So into the vacuum comes private matchmakers.

Reviewed by Gary D. Vogin, MD


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