Ethical Issues in Dialysis Aaron SpitalSeries Editor: Soliciting Kidneys on Web Sites: Is it Fair?
ABSTRACT
The Internet serves as a meeting place where people in need of kidney transplants can find strangers willing to donate. While Good Samaritan donors located via the Internet increase the number of kidneys available for transplantationthey also raise ethical issues. This practice alters the pattern for distributing kidneys from unrelated living donors and raises questions of justice in the allocation of organs. It is unclear if commercial forces are at play in the arrangements made between potential donors and recipients via the Internet. While it is unfair that some recipients do not have suitablewilling living donorsWeb sites help to balance the inequity by increasing the opportunity to find a living donor; they also benefit other potential recipients by reducing the waiting list. Howeveralthough these Web sites are probably here to stayInternet donor–recipient matches can have negative consequences that we need to minimize. Suggested strategies include regulatedmonitored Web sites and the development of more anonymous organ donor programs.
The Issue
Recent media coverage has highlighted the work of MatchingDonors.com (1)a Web site where people advertise their need for a kidney for a fee ranging from US$19 for a 1 week trial to US$595 for an indefinite period. People who wish to donate can select a recipient based on information in the recipient's advertisement. While some may be concerned by the introduction of a commercial element to this enterprisethe service offered seems to be popular and has already resulted in a few people receiving kidneysreportedly without money exchanges between the donors and their recipients. While American law prohibits the sale of organssolicitation of living donors itself is not illegal (2). Kidney donor Web sites seem to be a natural extension of modern life. These days we turn to the Web when we are unable to find the goods we want on Main Street. What do such Web sites mean for potential recipients who do not enroll in a private Internet matching program for organ transplantsand is this form of matching donors and recipients ethically acceptable?
Relevant Facts
A number of important facts have been established: 1) transplantation is the best treatment for most people with end-stage kidney disease (3); 2) the longer a patient is on dialysis prior to transplantationthe poorer the outcome after transplantation (4,5); 3) for a healthy personthe risk of donating a kidney is very low (6); and 4) kidneys from living donors provide excellent outcomes for recipients (7). With the wait for deceased donor kidneys currently being much longer than most people find acceptableit is understandable that at least some potential recipients and their families will use whatever means are within their reach to find kidney donors (living or deceased).
Inequity of Transplantation from Living Donors
Some potential recipients are fortunate enough to have a willing living donorwhile others are not. This constitutes a form of inequity resulting from chance. Some people may be willing to donate a kidney to someone they knowbut not to a stranger.
By facilitating living donor transplants directed to strangerswe are helping not only the recipients of these transplantsbut also patients on the waiting list for deceased donor organs by reducing the number of potential recipients competing for a limited supply of kidneys. In this waymatching Web sites help to offset inequity introduced by chance. Moreoverthis practice does not harm people higher in the queue than the recipient of the living donor kidneyas these people still wait the same amount of time.
On-line recipients are fortunate to find donorsas are those with a friend or relative willing and able to give up an organ. Furthermoreparticipation in on-line matching programs does not prevent or interfere with other potential recipients from finding a donor on-line. While it may be unsettling to see someone receive an organ before a patient who is very ill and near the top of the waiting listthere has always been innate inequity as a result of biologic factors influencing allocation beyond the control of a rational ordering system. This is compounded by the fact that people are more likely to donate to someone they know rather than a stranger (8).
Objections to Web Site Solicitation for Organs
Justice
Online recruitment violates our notions of justiceas access is not equally available to all. Some potential recipients may not have the knowledge or linguistic proficiency to use this technologyand for some the monthly fee is prohibitive. (As of July 122005the fee for a 30-day advertisement on MatchingDonors.com was US$295) (9). There are those who are uncomfortable or less resourceful in requesting an organ. A more or less attractive profile may influence who is offered an organ through the media.
Allocation
Hospitals allocate kidneys from living anonymous donors to the next suitable recipient on the waiting list. Howeverorgans donated via Web sites are directed to a particular recipient based on their profile on-line. Like living related donorsWeb site donors choose their recipientwho then bypasses the waiting list. Where no anonymous donor program existsa Good Samaritan's only avenue to donate is to use a donor Web site. Thus some kidneys that might have been offered to the waiting list are allocated to specific peoplethereby disadvantaging others on the waiting list.
Financial Transaction
Although the number of centers accepting donors who have only limited or no acquaintance with the recipient is increasing (10)there are those who have reservations about this practice due to fears that organs may be exchanged for money. Transplant centers have a responsibility to ensure that they are not party to such commercializationyet it may be very difficult for them to determine if the donor is being paid for the organ. Advertising for organs may appear to alter the landscape by subtly associating organ donation with a medium that is generally commerce based.
Informed Consent
Transplantation from living donors rests on the principle of voluntarism after full disclosure of risks and benefits of the proposed procedure. Concerns remain that potential donors may have misinformation or unrealistic expectations about the transplantation process based on information from the Web site. It is essential for transplant centers to address this by providing accurate information in an understandable format for all living donors. The assessment of donor suitability aims to identify a lack of knowledgemisunderstanding of informationor an absence of voluntarism.
Possible Solutions
Regulation
Some recipients-in-waiting seek a living donor from among family and friends via phone callse-mailsand face-to-face discussions. A network is built through these communications in the hope that someone will be a readywillingand compatible donor. Soliciting in this manner is not thought to be morally objectionable; it may be seen as an acceptable behavior for those who take responsibility to improve their health and lives. On the other handas just discussedobjections to solicitation via the Internet have been raised. These are not aimed at the technology per sebut at the potential to solicit strangers and mislead them. Yet strangers are likely to feel less obligation than family members or friendssuggesting that solicitation of strangers may be acceptable if it is accompanied by accurate information.
Regulations have been developed to control what is transmitted by technologies other than the Internet (e.g.telephonenews media). Regulation of living donor Web sites would be appropriate to ensure the safety of potential volunteers. Such a Web site could be monitored by staff who would review and post offers from volunteers willing to give a kidney. It could also be a place for potential recipients to post information about their needs and view messages posted by potential donors. Recipients-in-waiting could list personal informationbut would be prohibited from offering goods or money as incentives for donation. The Web site may improve the informed consent process for potential donors as the information on risksbenefitsand issues such as time required for the procedure and recoveryfinancial implicationstime away from worketc.would be complete and accurate. The Web site should be made freely available to dialysis unitsthe staffs of which could help willing patients to registerthereby achieving greater equity of willing access.
Anonymous Donor Programs
By developing more anonymous donor programswe will increase the number of living donor kidneys available to those on established waiting lists who lack living donors. Such programs will also provide more opportunities for those who wish to give a kidney to a stranger to do so without having to resort to Internet matching sites. There is a growing experience with nondirected organ donation that has demonstrated that this can be done ethically. Established nondirected living kidney donor programs have shown that it is usually possible to identify those donors who are suitable for this procedure and those who are not. Many of these Good Samaritan donors have reported that they do not regret their actions and are happy they donated (11). Yet the number of transplant programs in the United States and Canada that accept nondirected donors is small. Transplant centers shouldat the very leastencourage debate on this issue and provide a forum where potential and past donors and recipientscliniciansand the public can discuss their concerns and offer suggestions.
Conclusion
Donor Web sites may help fill a gap between kidney supply and demand by assisting people who are willing to donate a kidney but wish to have a say in who will receive the gift. These Web sites will probably continue to operate because there are volunteers who want to choose their recipients and because there are so many people with end-stage renal disease who are desperate for a transplant. While some of these sites may be viewed as unjustit may be possible to establish ones that are acceptable. Health care professionals have an obligation to advocate for their patients. Therefore they must strive to increase organ donation in an effort to provide organs for all potential recipients. Turning away willing living organ donors may deny potential recipients the possibility of improved health and longer life. Here we have the opportunity to increase organ donation by living donors in two ethically acceptable ways: increasing the availability of anonymous donor programs and establishing regulated Web sites that enable more people to find a willing living donor. Instead of shunning Web site donors who approach transplant centers in the spirit of generositywe should seriously consider those who are willing to give such a precious gift to someone in need.
