And the Organ Goes to...

End-stage organ failure is a growing problem in the US, due in part to the fact that the number of available donor organs is lagging far behind the number of people (approximately 96,000) suffering from end-stage organ failure who are on the waiting list to receive organ transplants, leading to approximately 17 deaths per day. Roughly 70,000 of the people currently on the waiting list are in need of a kidney transplant.

The current system of organ allocation is not sufficiently addressing the inadequate supply of donated organs, or the concerns of patients who say they are unfairly restricted from procuring a transplant organ through alternate means. Various medical ethicists, economists, and patients’ rights advocates have proposed the controversial approach of creating a market-based system that treats donated organs as fungible goods, arguing that the financial incentives of such an approach would greatly increase the number of available organs and free patients from a growing medical bureaucracy. This concept, along with the idea of using the Internet to solicit donors and facilitate the buying and selling of organs, is at the center of a heated debate between the federal government, the healthcare industry, patients, and families. This is especially true when it involves voluntary donors who want to give an organ to someone in need.

Organ Registry

Many patients and families have turned to the Internet as a way to find a potential donor by creating personalized websites or joining an online organ registry such as Matching Donors, which was created “to give people in need of transplant surgery an active way to search for a live organ donor” and “to increase the number of transplant surgeries and improve awareness of live organ donation.” Patients who sign up with Matching Donors pay $295 a month to “advertise their stories on the Internet and anywhere else potential donors and families might learn about them and decide to donate an organ.”

With approximately 4,000 potential donors listed on the Matching Donors website, many happy endings have already occurred, including one for Robert Hickey, PhD, Corporate CEO of Innovative Strategies, Inc., who was one of the first candidates to receive a kidney transplant (October 2004) through the assistance of Matching Donors. “I read about [them] in the Denver Post… [and] initially I was convinced it was a scam,” Hickey told MDNG. “I hung up on the call when I was asked for a credit card number. After going through dialysis for another week, I took a chance for one month and was inundated with donation offers.” Although Hickey’s experience has made him a staunch supporter of permitting patients to use the Internet to locate a willing organ donor, the increasing popularity of organizations such as Matching Donors has raised questions as to whether online solicitation should be permitted.

Ethics 101

Douglas Hanto, MD, Chief, Division of Transplantation at Beth Israel Deaconess Medical Center, is against such solicitation. “I have all of the respect in the world for people who are willing to come forward, but there are so many people on the list that are needy,” he says. “I think where the kidneys need to be donated is to the person who needs it the most: the next person on that center’s waiting list.” Hanto wrote the article “Ethical Challenges Posed by the Solicitation of Deceased and Living Organ Donors,” published in the March 8, 2007 issue of the New England Journal of Medicine (NEJM). The article examines the potential ethical dilemmas surrounding a decision by living donors to choose a patient who is the same race or religion as they are, a decision that is highly opposed by the United Network for Organ Sharing (UNOS).

“The solicitation of organs from deceased donors bypasses the patient who is first on the waiting list; therefore, it violates the principles of utility and justice on which allocation policies are based,” wrote Hanto. Originally Beth Israel would turn away transplant patients who found a donor through the Internet or other media, but recently Hanto has changed his position. “We [Beth Israel] still feel the fairest way is for those donors to donate to the patients who need it the most—[those who are] at the top of the list,” he says. “However, for patients in our system, rather than have them leave the system, we’re trying to work with [them].”

Francis Delmonico, MD, Director of Medical Affairs for The Transplantation Society, Advisor for Human Transplantation for the World Health Organization (WHO), Professor of Surgery at Harvard Medical School, and Medical Director for the New England Organ Bank (NEOB), agrees with Hanto, saying that using the Internet as a tool to find donors can be hazardous because there may be a risk if the donor is not evaluated carefully. However, Delmonico told MDNG that he “does not have any objection to relationships being formed under these circumstances.”

The Organ Exchange

In 1984, the National Organ Transplant Act (NOTA) was passed by Congress, making it “illegal for individuals to sell organs, whether they come from live donors or from people who have just died. Donors’ organs are to be made available by altruism, although that standard applies only to potential donors and their families.” NOTA deemed buying and selling organs a crime if a person were to “knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce.” Should a person get caught, it can lead to fi nes of $50,000 and/or imprisonment for up to five years. Richard Epstein, professor of law at the University of Chicago, says, “I think [NOTA] should lift [the ban] and see what happens.

There will be lots of intermediary tools that will emerge, and there will be an organized market, and the process will become safer, because the donors will be pre-selected to include those people who have minimum risks for transplants.” When asked for his opinion on the buying and selling of organs, Dave Undis, executive director of LifeSharers, said “If people were allowed to buy and sell organs, we could save thousands of lives every year.”

What Needs to Happen?

With the rates of diabetes and other chronic debilitating diseases increasing worldwide every year, it’s important to explore a variety of strategies designed to decrease the number of people on the organ transplant waiting list; whether it’s by perfecting xenograft transplantation (transplanting organs or tissue from one species to another) or implementing paired-kidney exchanges, in which an incompatible donor/recipient pair is matched with another incompatible pair; the recipients then “swap” donors. Although better, more efficient means of assigning and matching organ donors will alleviate some of the strain on the system, the best approach to negating the organ donor crisis is to step up efforts to deliver preventive care and educate patients on the dangers they face. Delmonico says that preventing hypertension, diabetes, obesity, and atherosclerosis “would help a lot in reducing the prevalence of end-stage organ failure that we see in end-stage kidney failure.”

Summary of Arguments for and Against Solicitation of Organ Donors

For

1. Donor autonomy requires that the donor or donor family be able to decide where the organs should be directed.

2. The current allocation system may be unfair to certain patients.

3. Solicitation results in more public awareness and willing donors.

Against

1. Donor autonomy is not absolute and must consider the fair rights of others.

2. Solicitation of deceased donors bypasses the fair policies of allocation and the person ethically entitled to the organ.

3. Solicitation permits discriminatory practices.

4. Solicitation favors the well educated and those with financial resources.

5. Solicitation risks the exploitation of donors or recipients and may result in the undetected buying and selling of organs.

6. Solicitation may divert organs to unsuitable candidates for transplantation.

Another Look at Transplant Tourism: Expert Opinions

[Transplant tourism is] unacceptable because it exploits the person who sells. I don’t think we can have the international community subscribe to look at poor people being victimized under these circumstances.

—Francis Delmonico, MD, Director of Medical Affairs for The Transplantation Society

I think people should do it, it’s the only thing that’s open to them, but I think it’s a riskier process than doing it at home. I think the way to stop the exports is to allow the domestic market to develop.

—Richard Epstein, Professor of Law at the University of Chicago

I think that it really is a bad idea. We discourage our recipients from doing that and we haven’t had good outcomes in the patients who have gone abroad.

—Douglas Hanto, MD, Chief, Division of Transplantation at Beth Israel Deaconess Medical Center

When those in need of a transplant are dying, they are entitled to do anything legal to save their lives. Transplant tourism, in some instances, is legal. My only concern is that only those of us with financial means can afford it. I would like it to be available to people of all means.

—Robert Hickey, PhD, Corporate CEO of Innovative Strategies, Inc.

I think it’s the inevitable result of the organ shortage. When people are dying waiting for organ transplants, you would have to expect them to do whatever they could to save their lives.

—Dave Undis, Executive Director of LifeSharers