New Means of Increasing the Transplant Organ Supply: Ethical and Legal Issues

Vol. 34 No. 4

By

Liliana M. Kalogjera is a staff attorney at the U.S. Department of Veterans Affairs Office of Regional Counsel in Milwaukee, Wisconsin, and provides advice and representation on matters involving health law, medical malpractice, employment, privacy, research compliance, bioethics, and other legal and/or ethical issues. She serves as a facilitator for the Medical Ethics and Palliative Medicine Course at the Medical College of Wisconsin and completed a fellowship at the University of Chicago’s MacLean Center for Clinical Medical Ethics. This work was supported in part by Health Resources Administration contract 231-00-0115. The content is the responsibility of the author alone and does not necessarily reflect the views or policies of the Department of Health and Human Services or the Department of Veterans Affairs, nor does mention of trade names, commercial products, or organizations imply endorsement by the U.S. government.

The conflict between the increasing demand for transplant organs on the one hand and the legal restrictions affecting the organ transplant process on the other continues to inspire novel strategies for obtaining access to transplant organs. This article examines the ethical and legal issues associated with two such strategies: (1) travel to foreign countries to obtain an organ transplant, known as “transplant tourism”; and (2) soliciting organ donors and recipients via websites such as MatchingDonors.com, referred to as “Internet solicitation.”


Some Background on Organ Shortage

According to data from the Organ Procurement and Transplantation Network (OPTN) as of December 4, 2007, over 97,000 patients in the United States are on the waiting list for an organ transplant, and the number of patients who have died annually while on the waiting list has steadily increased from over 4,000 in 1996 to over 7,000 in 2005. A vast majority of the waiting list candidates are waiting for kidney transplants, with the next largest group seeking liver transplants. Other solid organ transplant needs include pancreas, kidney-pancreas, intestine, heart, lung, and heart-lung. To meet these transplant needs, a living donor can help by providing a kidney or parts of the liver, lung, pancreas, or intestine. The remainder must be culled from newly deceased bodies.

The legal backdrop and formal structures governing the organ transplant process provide critical context for—and are inextricably linked to—the transplant organ shortage in the United States. Of these laws and structures, the OPTN and the prohibition on the sale of organs are particularly significant.

The organ donation and transplantation processes take place within the structure of the OPTN, which the U.S. Congress established through the National Organ Transplant Act of 1984 (NOTA), Pub. L. No. 98-507, 98 Stat. 2339. Since 1986, the United Network for Organ Sharing (UNOS), a private, nonprofit organization, has operated the OPTN under a contract with the Health Resources and Services Administration of the U.S. Department of Health and Human Services. In this role, UNOS has shaped organ transplantation in the United States by establishing the organ sharing/matching and allocation system (e.g., the wait list), collecting and publishing data analyses critical to our understanding of the quantitative aspects of organ transplantation, serving as an informational resource for the general public and for all parties involved with organ transplantation, and establishing policies and ethical guidelines for organ transplantation. In this last function, UNOS continues to set ethical standards on a variety of issues, including the two strategies discussed in this article.

Another integral aspect of organ transplantation in the United States is the prohibition on the sale of organs that exists at both the federal and state level. The NOTA “Prohibition of Organ Purchases” makes it “unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce.” 42 U.S.C. § 274e (2000). A person who violates NOTA may face criminal penalties consisting of a fine of up to $50,000 and imprisonment for up to five years. All states have followed suit and passed states laws incorporating the Uniform Anatomical Gift Act, which, through amendments in 1987, prohibits a person from knowingly purchasing or selling an organ in exchange for valuable consideration, when organ removal is intended to occur after death. Although the arguments for and against organ sales are beyond the scope of this article, and the prohibition may be ethically justified, the prohibition on organ sales has likely contributed, at least in part, to the growing shortage.

The organ shortage continues to grow despite multifaceted efforts to increase the transplant organ supply. Some of these strategies, such as emotionally charged advertisements sponsored by organ procurement agencies, appeal to the general public’s altruism. Others are market-based, such as proposals to overhaul existing U.S. laws to permit the sale of solid organs. Others focus on pragmatic directives, such as improving education about organ donation and streamlining the procedural aspects of organ donor registration (e.g., informational pamphlets and organ donor stickers on drivers’ licenses).

Because these more traditional approaches have proved insufficient to address the growing crisis, novel alternatives continue to emerge and to create new ethical and legal dilemmas. Transplant tourism and Internet solicitation represent ways in which people are working around the legal restraints and institutional structures for obtaining an organ transplant in order to secure transplant organs themselves.


Transplant Tourism

Transplant tourism involves travel to foreign countries for the purpose of obtaining an organ transplant. Transplant tourists hail from a variety of countries, including the United States, Germany, Israel, Japan, Australia, and Egypt. Destinations for transplant tourism include Colombia, China, the Philippines, India, and Thailand.

Organ transplant offerings vary among transplant tours. Organs may come from living or deceased donors and may include kidneys, hearts, lungs, and livers. Some transplant tourism companies, such as the Canadian-based MediTours, fall within the broader category of medical tourism and offer organ transplants as one option in a menu of other medical services, such as hip and knee replacements, orthodontics, plastic surgery, and in vitro fertilization. See http://meditours.org/index.html. Others, such as Organ Transplant Services, which advertises an Arizona address, focus exclusively on organ transplants. See www.organtransplantservices.com. In addition to providing the medical care associated with the organ transplant, transplant tours may include airfare, ground transportation, luxury accommodations, food, and other travel arrangements.

Advertised advantages of transplant tourism include access to organ transplants at a lower cost and with shorter waiting times than in countries such as the United States. Kidney transplant tours range from approximately $75,000 to $80,000, while liver tours may cost $100,000 or more. Some companies require an additional deposit in case of complications. The waiting time for a transplant organ for a transplant tourist may be shorter than in the United States because the transplant tourism destination has less restrictive or unenforced laws pertaining to the organ transplant process or because transplant tourists bypass the legal system entirely.

Arguments supporting transplant tourism. Advocates for transplant tourism highlight the dire shortage of transplant organs in the United States and the cost savings associated with obtaining an organ transplant abroad. A person may be unable to obtain a life-saving transplant organ in time due to his or her position on the waiting list or due to an inability to pay for his or her share of health care costs related to the transplant. By expanding the organ supply, transplant tourism may help to relieve the shortage in the United States.

In light of these potential cost savings, at least one state legislature, West Virginia’s, has introduced legislation to provide financial incentives for state employees to obtain medical care or procedures abroad when the following criteria are met: (1) the care or procedures are less expensive in a foreign health facility, and (2) the total cost of the care or procedure plus the financial incentives does not exceed the cost of obtaining the care or procedure in the United States. KA. Bramstedt & Jun Xu, Checklist: Passport, Plane Ticket, Organ Transplant, 7 Am. J. Transplantation 1698, 1699 (2007) (citing W.Va. H.B. 4359 and H.B. 4711). Although the West Virginia legislation did not become law and was not specifically drafted to address transplant tourism, it may indicate some level of public support for facilitating transplant tourism by making it financially attractive and legitimating the practice.

Proponents also argue that transplant tourism provides a valuable public service. First, it brings together people who need organs and people who are willing to donate organs who would otherwise never meet in light of geopolitical boundaries that artificially divide the global supply of organs. Second, transplant tourism may have positive financial implications for individuals and for their families, communities, and even nations, many of whom are economically poor.

Arguments against transplant tourism. Despite the potential advantages of transplant tourism, critics emphasize its substantial drawbacks and risks.

Transplant tourism may pose health and safety risks to individual recipients and donors as well as from a public health perspective. To refute this claim, some transplant tourism companies advertise that their affiliated transplant hospitals are accredited by the Joint Commission International (a division of a subsidiary of the Joint Commission, which many regard as the premier accreditation body of hospitals in the United States) or that the transplant physicians have been trained in the United States. Although this may be true in some cases, because of the lack of oversight of transplant tourism, it is difficult, if not impossible, to ensure comparable health and safety standards to those within the United States. In addition, as pointed out in the American Medical Association’s June 2007 report entitled Medical Travel Outside the United States, travel after surgery may increase certain health risks, such as blood clots, and medical tourism raises infectious disease concerns. Furthermore, insufficient or illegible medical records may complicate the provision of follow-up care when transplant tourists return to their home countries.

From an ethical perspective, transplant tourism raises concerns about the potential exploitation of organ donors, which UNOS and the World Health Organization have highlighted in numerous statements denouncing transplant tourism. For example, the government of China, a transplant tourism destination, has admitted that executed prisoners have served as the primary organ source for its transplant program. Annika Tibell, The Transplantation Society’s Policy on Interactions with China, 84 Transplantation 292 (2007). The use of prisoners as donors contradicts ethical mandates that organ donation occur voluntarily, based on the autonomous choice of the donor or next of kin. Some news sources allege that these donors have not always been dead when the organ harvesting process began. Such a practice goes far beyond the realm of individual autonomy concerns and into the realms of torture and human rights abuses. Although the Chinese government claims to be developing a legal framework with safeguards, such as prohibitions on the sale of organs and organ trafficking, the results of these efforts remain to be seen.

Also ethically problematic are concerns about exploitation and coercion of donors through financial payments for organs. The living donors and families of deceased donors who supply organs for transplant tourism are often impoverished, and their recruitment process often lacks the disclosure and understanding of a truly informed consent process and the psychological screening process for living donors. A medical anthropological study concluded that, in addition to facing health problems due to insufficient follow-up care, many donors encounter psychological harm and social stigma due to their participation in the organ donation process. An individual interviewed in this study stated, “They call us prostitutes . . . . Actually, we are worse than prostitutes because we have sold something we can never get back. We are a disgrace to ourselves and to our country.” Nancy Scheper-Hughes, Keeping an Eye on the Global Traffic in Human Organs, 361 The Lancet 1645 (1998). Whether the donors are prisoners or impoverished people, it is ethically troublesome for people from the United States and other countries to bypass the ethical safeguards in their own countries in order to take advantage of lax laws and practices abroad.

Not only does transplant tourism potentially condone and promote the exploitation of vulnerable populations, it raises fairness and justice issues. A transplant tourist from the United States bypasses the waiting list and receives an organ based not on need, likelihood of success, or other medical factors, but because of ability to pay for and attend the transplant tour. This is problematic both in terms of fairness to others on the waiting list and, on a global level, in terms of justice in the allocation of organs.

Perhaps due to these ethical concerns, transplant tourism may face increased legal scrutiny in the future. Currently, many of the transplant tourism destinations lack adequate laws and enforcement mechanisms to regulate the practice. As such, anecdotal evidence suggests that, in many cases, transplant tourism bypasses the law entirely. This may prompt the countries of origin of transplant tourists to impose restrictions. Belgium, for example, has proposed to limit organ transplants from non-European Union hospitals to a list of hospitals deemed to meet certain ethical standards, such as informed consent requirements. Violators would be subject to a fine.


Internet Solicitation

Whereas transplant tourists travel the globe to obtain life-saving organs, others find their match in a virtual community, such as MatchingDonors.com. Internet solicitation involves a potential recipient and potential living donor finding each other on a website. At MatchingDonors.com, potential recipients pay a membership fee to post their photos and personal stories describing their transplant organ needs. Potential donors pay no fee and are able to browse the profiles of over 4,000 potential recipients. If a potential donor is interested in a potential recipient, the potential donor can contact the potential recipient to begin a dialogue and, if both agree, to proceed with the organ donation process. State and federal law in the United States permit directed living donation, although it has predominantly occurred between people who have a preexisting special relationship—such as family members or friends—not between people who met solely for the purpose of an organ exchange. Alexandra K. Glazier & Scott Sasjack, Should It Be Illicit to Solicit? A Legal Analysis of Policy Options to Regulate Solicitation of Organs for Transplant, 17 Health Matrix 63, 65 (2007).

Arguments supporting Internet solicitation. Proponents portray Internet solicitation as a “win-win” approach that provides a valuable public service by helping to match people in dire need for organs with altruistic potential donors in a manner that is safe, ethical, and legal. MatchingDonors.com displays numerous success stories in which a potential recipient and potential donor who met at the site exchanged a life-saving organ, and proponents point to MatchingDonors.com’s tax-exempt status under Section 501(c)(3) of the Internal Revenue Code as general evidence of its ethically desirable nonprofit mission.

In terms of safeguards, to the extent organ transplants facilitated by Internet solicitation sites are performed in the United States, the transplant process benefits from the numerous medical and ethical protections implemented at hospitals nationwide. Because of the high quality of care at hospitals in the United States, donors and recipients—whether they meet through Internet solicitation or other means—are less vulnerable to the health and safety risks found in transplant tourism. In addition, many hospitals require psychological screening of live organ donors. This requirement provides an additional level of protection for donors and recipients and helps to balance out concerns about the lack of regulation of the Internet. Due to ethical or legal concerns, however, some hospitals have refused to perform transplants in which the donor and recipient met through Internet solicitation; this raises potential patient abandonment issues. Glazier & Sasjack, supra, at 83–86.

From an ethical perspective, Internet solicitation can help to promote individual autonomy and may be desirable on utilitarian grounds. Internet solicitation respects potential donors’ rights to use their bodies as they see fit, to participate in charitable giving, and to receive emotional or psychological benefits from this gift. Internet solicitation also promotes the individual autonomy of potential recipients by providing them with a legal alternative to the waiting list. In particular, Internet solicitation gives potential recipients who lack willing or medically compatible family members or friends the opportunity to find a living donor. In addition, proponents set forth the utilitarian claim that Internet solicitation helps to increase the total number of organs, which helps the patients on the waiting list to advance faster up the list than they would in the absence of this alternative.

From a legal perspective, Internet solicitation is not, on its face, illegal at the state or federal level. Section 6(A)(3) of the 1987 version of the Uniform Anatomical Gift Act explicitly permits directed organ donation for transplantation purposes, and this permission is not contingent on how the donor and recipient met. Moreover, the communications underlying Internet solicitation may represent constitutionally protected speech under the First Amendment. To address potential legal concerns about the sale of organs, MatchingDonors.com boldly displays the prohibition on receipt of financial benefit in exchange for organ donation and recommends that any interested potential donor see his or her physician before matching.

Arguments against Internet solicitation. UNOS and commentators from the bioethics and medical communities have expressed opposition to Internet solicitation for a variety of reasons.

First, despite acknowledgment of the legal prohibition on the exchange of valuable consideration for organ donation, critics have expressed concerns that recipients are, in fact, providing donors with financial or other consideration “under the table.” Thus, Internet solicitation sites may be helping to facilitate circumvention of state and federal law as well as ethical prohibitions on organ sales.

Second, by bypassing the formal waiting list and allocation structure, Internet solicitation contributes to inequity in organ allocation. This argument is somewhat weakened by the fact that there is no formal waiting list or allocation structure for living organ donation in the United States. The practice of one family member donating an organ to another is a commonly accepted practice, and those recipients also bypass the waiting list for organs from deceased donors. Similarly, other types of directed living organ donation, such as between friends or fellow church members, also appear to have raised little ethical controversy in comparison to MatchingDonors.com. This leads to the question of whether the act of potential donors and recipients meeting on the Internet is ethically problematic in itself.

Critics do highlight various characteristics of the Internet forum of sites such as MatchingDonors.com as ethically problematic. First, on the Internet there may an increased risk of recipient selection based on superficial or undesirable criteria, in a manner akin to a popularity or beauty contest or on the basis of racial or other prejudices. While this may be true, these concerns would apply to any directed donation arrangements in which the persons are not related; people are free to pick their friends on any basis they wish, superficial or not, and organ donation among friends does not appear to be as ethically controversial. Second, heightened concerns exist about the veracity of potential recipients’ profiles. Because of the lack of legal and other safeguards of these Internet communities and the desperation of potential recipients, donors may participate under false pretenses. While this sort of deception is commonly accepted in other contexts—such as in the marketplace under the doctrine of caveat emptor (i.e., let the buyer beware)—the prohibition on organ sales suggests that the market perspective may be inappropriate for organs. This argument is particularly compelling because of the health and other risks that potential recipients face.


Conclusion

Certainly, transplant tourism and Internet solicitation represent two novel responses to the growing transplant organ shortage. Interestingly, the Internet, which has expanded individual access to information and communication in myriad ways, plays a key role for both strategies; transplant tourism companies rely on their Web presence to reach potential customers across the world, and Internet solicitation facilitates the introduction of potential donors and recipients who would otherwise never meet. Just as the Internet is largely unregulated, much of the transplant tourism and Internet solicitation processes occur beyond the laws and structures governing organ transplantation in the United States. As such, participants may be particularly vulnerable, which raises significant ethical concerns and may lead to the need for greater involvement of law and policy makers.


Web Links and Resources

Organ Procurement and Transplantation Network: www.optn.org

United Network for Organ Sharing: www.unos.org

World Health Organization, Ethics and Health, Human Organ and Tissue Transplantation: www.who.int/ethics/topics/human_transplant/en/

American Journal of Bioethics, Organ Transplant/Donation:
www.bioethics.net/topics.php?catId=9

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