The Ethical Complexities of Online Organ Solicitation via Donor–Patient Websites: Avoiding the “Beauty Contest”
The proliferation of the Internet has spurred the creation of websites dedicated to facilitating living directed organ donations. We argue that such sites potentially devolve into “beauty contests” where patients in need are evaluated on the basis of their personal appearance and biography—variables which should have no relevance to organ allocation. Altruism should be the guiding motivation for all donations, and when it does, there is no place for a beauty contest. The power of the Internet is optimally used when it facilitates Good Samaritan donations—donations to any stranger, rather than handpicked ones. Social networking sites which aim to match potential donors and patients should mask personal identifying information, allowing the ethical principles of altruism and justice to guide organ allocation.
California Transplant Donor Network
United Network for Organ Sharing
Currently, the demand for human organs far outstrips supply and it is in this dynamic that a host of ethical dilemmas emerge as individuals vigorously explore potential options to increase the size of the donor pool and optimize organ allocation. Technological innovations have become prominent in both pursuits. Software programs have been developed that attempt to match living donors and needy patients through either paired exchanges or donor chains (1,2). Additionally, the Internet has spurred the creation of websites dedicated to facilitating living directed organ donation. These sites potentially devolve into “beauty contests” where patients are evaluated on the basis of their personal appearance and biography—variables that undermine the ethical principles of altruism and justice and should have no relevance to organ allocation.
It is widely known that social networking via the Internet has been used as a mechanism to facilitate living donor–patient matching. The various formats include chat room solicitation, patient-owned websites (e.g. http://joeneedsaliver.com), and classified advertising (e.g. Craigslist.org). In this paper, we focus our attention on sites in the vein of MatchingDonors.com, a website exclusively dedicated to pairing healthy strangers (“Good Samaritans”) with patients who have end-stage kidney, liver, lung, pancreas or intestinal disease. The site's stated mission is to serve as “a venue where patients and potential donors can meet and communicate, and hopefully expedite a donor agreeing to give a patient a much needed organ” (3).
MatchingDonors.com has grown rapidly in stature since it was founded in 2004, and now boasts over 1.5 million hits per month (3,4). To date, over 500 patients have profiles posted to the website and over 9000 individuals have registered as potential living donors (3). The MatchingDonors.com newsletter from March 9, 2011 claims the organization has facilitated over 100 transplants (3). With approximately 100 transplants in 7 years, MatchingDonors.com is involved in a comparatively small proportion of US transplants; nonetheless, these transplants have not been without ethical controversy. Indeed, allegations surround the very first transplant organized through MatchingDonors.com between Bob Hickey and Robert Smitty on October 20, 2004 in Denver, Colorado. While Bob Hickey acknowledged legally reimbursing the donor approximately $5000 for travel expenses, there were allegations, never proven, Mr. Smitty profited financially. In this regard, Robert Smitty turned himself in 8 days after the surgery for failure to pay child support and anonymous donors paid “2,650 [US Dollars], the amount Smitty needed to pay off a block of child support and get out of jail” (5). Additionally, in a Washington Post profile MatchingDonors.com admitted the site is “plagued by unscrupulous offers” (6).
The site has also garnered controversy for its patient membership fee. There are a variety of subscription levels available to patients. A “lifetime” membership costs US $595.00, a 3-month membership $441.00, a 30-day trial $295.0 and a 7-day trial costs $49.00 (3). However, financing plans are available and the creators of the nonprofit have steadfastly claimed the site will waive the enrollment fee for any individual unable to pay. Upon purchasing access to the site, patients then create an online personal profile, similar to numerous job matching or dating websites. This page contains pertinent medical information such as the patient's HLA data, and if they choose, a photograph as well as a brief biographical sketch detailing their personal struggle for an organ. It is clear the ethos of personal connection infuses the structure of the site. The top of each patient's profile is dedicated to his or her photo and a “Description of Patient Situation” (3). As a result, the design focuses the potential donor's attention on the patient's narrative. Prospective living donors enroll in the site for free and are able to search and read these patient profiles. If they feel moved to help a particular patient, they can make contact with the individual to arrange compatibility testing.
A similar, but less prominent donor–patient matching website is FloodSisters.org. This site utilizes a similar mechanism as MatchingDonors.com; namely, photos and biographical sketches are available for perusal. However, the lifetime membership fee of $1000 (fee waivers are available) is substantially higher. Founded in 2008, this website currently has 27 donor candidates and 58 patients registered, and has facilitated five transplants. The idea for the website was spawned after the Flood family used Craigslist.org to post an ad seeking a kidney for their father who suffered from renal failure (7).
Perhaps investigative reporter Ted Koppel framed the ethics question best when he said,
More and more Americans are turning to the Internet to conduct all facets of their day to day lives. So, if they can make their own case to the public at large and find someone who empathizes with them and is willing to donate an organ, what's wrong with that? (3)
Over the last two decades, the emergence of public solicitation for deceased organs (e.g. television, newspapers and billboards) has developed because the Uniform Anatomical Gift Act of 1968 permits the families of the deceased to bypass the United Network for Organ Sharing (UNOS) waiting list and direct the organs of their loved one to a specific individual (8). When the Uniform Anatomical Gift Act was originally passed lawmakers could not have foreseen the medical and technological landscape that would enable solicited living donations arranged with no prior relationship between the donor and recipient (9).
Significantly, no federal laws govern the distribution of organs donated from living donors (8). The resulting “ … regulatory void for live organ donation … has permitted the development of a parallel fragmented public allocation system that exists on the Internet and other public media” (10). This framework establishes a system with competing principles of maximizing donations, respecting donor autonomy and the equitable distribution of organs.
Clinical Ethics Analysis
The fundamental concerns relating to MatchingDonors.com, FloodSisters.org, and similar sites are twofold: (1) unfettered donor autonomy creates the dynamic of a “beauty contest” in which the most compelling biography or photogenic patient “wins” and (2) the mechanics of these websites seem to presume the donor candidate's motivation is altruism (the core principle of organ donation).
Going forward, it is essential that the ethical principle of justice continue to guide the equitable allocation of organs to all patients with the capacity to benefit. If transplantation becomes a “beauty contest”, then those who are most photogenic or have the “best story” will have better access to Good Samaritan donations. MatchingDonors.com and similar sites move beyond conventional directed donation because there is more than one identified patient in need. With these websites there can be hundreds of identified patients in need and the donor candidate shops [searches profiles] to allocate his/her organ to the ‘winner’. The transplant community rejects the practice of donors selecting recipients based on normative classifications such as clinical diagnosis, class, race and religion. MatchingDonors.com's paired exchange program does not eliminate the “shopping” and “beauty contents” elements of the organ-matching search because the initial “find” (incompatible match) still uses these mechanisms.
As stated earlier, all patients with the capacity to benefit from transplant are in need. The concept of shopping sets the stage for the conscious or unconscious search for the “social worthiness” of patients and it is well established that this should not be a criterion for organ allocation (11). Altruism must be the foundation of organ donation and as such it obviates value judgments and the search for a “winning” organ recipient. In its [altruism] purest form, there is no shopping among patients; rather there is a donation to any patient with the capacity to benefit. In fact, there are individuals who deplore the idea of shopping for a recipient because they find it ethically unpalatable. These Good Samaritans do not think they should have such a role because the gift they have to offer is viewed as a gift to anyone with the clinical need for it and the medical team is in the best position to determine that need. These donors use the Internet for educational information about donation and transplant centers, as well as networking with others who have been donors, but they do not use the Internet as a patient selection tool (12). Furthermore, a public opinion poll conducted by Dr. Aaron Spital of a thousand individuals found that “93% of respondents who [said they] were willing to donate a kidney to a stranger said they would still donate if they could not direct their donation” (13).
Perception of bias in the donation process has already resulted in certain restrictions upon the ability of deceased donor families to select the recipient. For example, in Florida the family members of a murdered Ku Klux Klan sympathizer agreed to donate his organs on the condition that the potential recipients had to be white (11). In response to this case the Florida legislature banned the directed donation of organs to specific racial or religious groups, and required that the donor name a specific individual. In a similar vein, UNOS declared that ‘donation of organs in a manner which discriminates for or against a class of people based on race, national origin, religion, gender or similar characteristics is unethical and may not ethically be accepted by UNOS members or transplant professionals’ (14,15).
Critics fear online solicitation of living organ donors will allow group bias to flourish. In particular, there are no safeguards to preclude the distribution of living organs based on race. The online interaction between potential donors and recipients adds a novel barrier to the equitable distribution of a scarce resource. Instead of stating that they want to donate to a white individual, the aforementioned family could simply search the internet and select an individual within their desired group. Thus, “Shopping the Internet for organ recipients functions like directed donation to an individual but the process practically invites donation to groups.” (16). It is imperative to note that not all group biases stem from racial preference. In the case of one anonymous donor, she requested that, “the recipient be a person who is not associated with a killing vocation of any type (e.g. hunter, fisherman)” (17). The ethical challenge UNOS and the transplant community face is how to best prevent selection bias while maximizing utility.
The solicitation of living donors over the Internet has proved ethically challenging for the transplant community. NATCO, The Organization of Transplant Professionals has argued forcefully against donor solicitation. In a policy position, revised in 2008 (and currently under review) they argue,
Directed donation was never intended to facilitate inequitable, unjust, or discriminatory allocation of organs. These policies were intended to allow families some control over the organs of their loved one so that they could potentially help someone else close to them. However, because of the currently unrestricted nature of directed donation, abuses are possible … NATCO proposes that under no circumstance will solicitation for organs from either living or deceased donors be permitted. Commercial solicitation is especially reprehensible and should be stopped (18).
Yet the American Society of Transplant Surgeons has taken a different course, tentatively supporting solicitation.
The solicitation may have been to family members, friends, acquaintances or strangers and may have been done directly or indirectly through community groups or via internet websites. In so far as these solicited directed donors will add an additional scarce resource, there are ethical grounds to proceed with these types of transplants as long as the motivation is based in altruism and there are well defined safeguards regarding informed consent and evaluation in the transplant centers performing them that insure safety for the donor, the recipient, the transplant center and the community (19).
This divide within the transplant community is reflected in UNOS policy. While the UNOS Ethics Committee philosophically opposes MatchingDonors.com stating that the site“…exploits vulnerable populations and undermines public trust in the equitable allocation of organs for transplantation” (20). It declines to participate in the creation, management or oversight of a registry of potential altruistic living donors. Of course, no allocation system is without ethical dilemmas, and our goal is to reduce ethical loopholes as UNOS confronts a new era of technological innovations and social interactions.
In attempting to craft policy reforms that address the ethical complexities of donor–patient matching websites one could benchmark against the National Kidney Registry and the Altruistic Living Donor Registry Act of 2010 (22). These two mechanisms employ use of Internet technology but they include oversight that prevents the ethically problematic activity of ‘shopping’ for patients. The National Kidney Registry is an online registry where adults can offer to participate as kidney donors in chains or exchange pairs. The organization works with transplant centers in the United States and Australia to facilitate these chains and pairs, provides donor health and life insurance, and is involved with the donor candidate throughout the process. California's living donor registry aims to be active in Spring 2012 and will allow adults to register their desire to donate a kidney to a stranger. The program staff will assist the individual with the initial steps (e.g. educational information, medical screening questionnaire), ultimately linking them to local transplant centers who will then manage the allocation process. The living donor registry will also potentially network with the National Kidney Registry and receive logistical support from regional organ procurement organizations.
In closing, while there is undoubtedly a positive use of social networking to facilitate donations, serious ethical dilemmas emerge when the Internet is an untamed mechanism for organ allocation. Since US regulation governing deceased organ allocation is federal, we pose that Congress should empower a task force to determine the enhanced regulations and oversight required to meet the novel challenges confronting living donor allocation. As social networking becomes more deeply enmeshed throughout the organ donation and allocation process, it is imperative that the transplant community take concrete steps to exclude ‘beauty contests’ and ensure the equitable allocation of organs.
This work was supported in part by Health Resources and Services Administration contract 234-2005-37011C. The content is the responsibility of the authors alone and does not necessarily reflect the views or policies of the Department of Health and Human Services, nor does mention of trade names, commercial products or organizations imply endorsement by the US Government.
The authors of this manuscript have conflicts of interest to disclose as described by the American Journal of Transplantation. Dr. Bramstedt is Ethics Committee Chair for NATCO. She is also an ethics consultant for the California Transplant Donor Network (CTDN). The views expressed are her own and should not be interpreted as a statement or perspective from NATCO or CTDN. No IRB approval required.