Ethics become, in these examples, the standard by which the maps we craft, the statistics we generate, and the policies we promote on their basis serve to obscure or reflect the moral ideals we purport to embrace. Some will say, “It’s just a map,” or “they’re just numbers,” perhaps limited but certainly not malignant. But the consequences of the maps we choose to make, the statistics we self-consciously collect and arrange, directly affect lives, our own and those of our neighbors.
Consider graft organ transplantation in the United States, a subject introduced briefly in chapter 3. The ability to transplant a healthy organ from one body to another was one of the significant clinical advances of the last century. From the start, the problem has been that there have never been enough organ donors to provide what today is broadly advertised as the “gift of life” to those whose illnesses require a replacement kidney, heart, lung, or liver. We insist that the gift of an organ upon a person’s death—and increasingly, for some organs while the donor lives (e.g., a kidney)—is a contribution to others that only the most churlish would refuse. We must, bioethicists and news commentators say, do more to increase the supply.1
The ethical ideal is beneficence, declaring as a moral good the active and selfless sharing of ourselves in a community of others like ourselves.2 And so, as Nancy Scheper-Hughes wrote, we ethically promote organ donation while disparaging organ sales trafficking and the “organ tourism” that occurs when the rich of one nation seek organs from the poor of another country.3 We insist that the commercial nature of such transfers not only is inherently inequitable—after all, the rich don’t sell organs, only poor folks do—but violates the defined virtues of egalitarian sharing enacted (in theory) by graft organ donation in civil societies.
That said, organ transplantation is a quagmire of moral stress, distress, and perhaps injury. Joseph J. Fins describes the distress that results from overenthusiastic “hovering” organ collection representatives, waiting to “swoop in” to claim organs of those not yet quite deceased, “as if [they were] an entitlement.”4 Too often the families of critically ill patients are pressured to participate even when a patient’s prognosis is uncertain and hope remains. The result is politely described as “premature harvesting.”5 All of this is made more complex by the clinical and moral problems concerning the criteria by which a body is declared deceased and thus, one might say, “organ ready.” The result is what some call “justified killing,”6 a willful termination of the still living for some greater good: “Although it may be perfectly ethical to remove vital organs for transplantation … the reason it is ethical cannot be that we are convinced they are really dead.”7
So there is the stress experienced by potential recipients waiting for life-prolonging donation, the distress of the family of the potential donor not yet dead, and that of organ transplant officials pressured to collect more viable organs. And then we have the moral distress of medical personnel like Fins who are engaged in a fragile patient’s continuing, potentially at-risk care, as well as the distress experienced by those who see themselves as advocates for patients in need of new organs. Finally, there is the moral stress of the nation in which the national graft organ transplant system was created and is promoted today.
In 1984 the US Congress passed the National Organ Transplantation Act (NOTA) “to create a national system in which an adequate supply of organs would be available on an equitable basis to patients through the nation.”8 The act defined transplantable graft organs as a national resource to be donated freely and distributed fairly among Americans, irrespective of a patient’s income or social position. The moral principles underlying a national policy of organ donation were to be altruism and beneficence.9
Congress tasked the US Department of Health and Human Services (HHS) with the responsibility for organizing a national network for organ collection and distribution based on these moral suppositions. In its turn, HHS ordered a study on how best to structure a program that might enhance the supply of needed organs, improve the distribution of organs collected, and, of course, keep costs down.10 “Equitable access to transplantation was a central issue,” the report’s authors insisted, arguing that a patient’s financial status should not limit access to a transplant service.11 That was as much practical policy as it was a moral declaration. If organs were to be donated “in a spirit of altruism and volunteerism and constitute a national resource to be used for the public good,”12 then potential donors had to believe they, or their loved ones, were equally likely to be recipients if the need arose. If they were not, then they would be outside the community of equal giving and receiving. As a result, donations would presumably suffer.
The insistence that the system be equally accessible to all Americans reflected a justice provision declaring equality of treatment as a guiding national principle and thus, in theory, a principle of the systems it sets in place. The result was to be a model of the ethical application of this worthy moral stance. “No part of the health care system has done more to resolve questions of justice than transplantation,” experts boasted in the 1990s.13
The NOTA-mandated HHS report resulted in the creation of the United Network for Organ Sharing (UNOS), which was charged with developing and overseeing a “national organ procurement and transplantation network” (OPTN). In the resulting system, UNOS organ procurement organizations (OPOs), typically located in or near transplant-performing hospitals, would be responsible for collecting and distributing graft organs across eleven national transplantation districts. The assumption was that “optimal quality as well as cost savings from economies of scale and experience could be realized through ‘regionalization.’”14 As one author cited in the 1986 HHS report put it: “By performing an economically efficient volume of procedures for any specialized hospital service, dollars can be saved with no loss in the quality of care provided.”15 So, from the start, the goal advanced a morality whose operational principle was cost efficiency.
Figure 8.1 shows a 2014 map of UNOS regions.16 In this map, regional divisions are shaded in light, nonconfrontational colors in an equal-area, conical projection that seems, well, right. It is hard to see that Vermont is split into two parts, its eastern division set in Region 1, and the western part in New York State’s Region 9. Nor does either the projection or its coloring raise questions about the inclusion of Hawaii in Region 6 rather than the more heavily populated Region 5. The map just feels correct, a fair division of the nation into parts (Northeast, Southwest, Pacific Northwest, etc.) that we intuitively understand.
Although organ donations are solicited from across the nation, the majority of procedures are performed at hospitals in major cities. Centralizing transplant procedures seemed to make pragmatic sense. Transplantation is a complex surgery, requiring specific expertise rarely available in smaller hospitals. Moreover, large urban populations are more likely to provide a quantity of immediately available viable organs. Because organs degrade outside the living body—when the transplanted heart, for example, is separated from its living host—speed of both collection and distribution is essential.17 So the proximity of both donor and recipient to a transplant center is desirable; distance from a transplant center is a negative factor in choosing which needy patient will get the donated heart, lung, or other organ.
The result is “biased toward higher density areas,” and the system’s maximizing goals are “achieved by reducing the travel of the many as much as possible, while accepting greater travel for a few.”18 The unintended result, HHS Secretary Donna Shalala informed Congress in the mid-1990s, was a systemic failure of the “equable distribution” promised in law by NOTA. “In some areas of our nation, patients wait 5 times longer or more for an organ than in other areas. … In the worst case, patients die in areas where waiting times are long while at the same time organs are being made available to less ill patients in areas with shorter waiting times.”19 Shalala proposed a series of changes designed to decrease observed spatial disparities.20
If, as she claimed, the system failed to meet the standards of equality of treatment ethically required by the legislation’s justice ideal, then the failure was moral (all people were not equal), ethical (if equality is a standard, then it was not met), and geographic (discrimination was being practiced on the basis of location). Legally, Shalala was thus obliged to assert HHS oversight to ensure that the law’s ideals were enacted. Consequentially, doing so would enhance the idea of a participatory community whose members give and receive equally, irrespective of location or personal circumstance.
UNOS launched a highly public campaign opposing Secretary Shalala’s proposed changes. The result was a bitter battle over means, not ends. All agreed that graft organ transplantation was an important good and that organ donation was a beneficent act to be encouraged. Everyone agreed fairness was important, even if nobody was quite sure what fairness meant. “We have general principles,” UNOS president Dr. Larry Hunsicker admitted, “but we don’t yet know how we as a community want to measure the question of fairness.”21 The result was a problem in what David M. Smith calls “moral geography”: “a rubric for empirical investigations into various aspects of spatial patterns and relations which invite a moral meaning.”22
I became involved in all of this after reading an article by Alan B. Pritsker, then the doyen of simulation modeling.23 In 1998 he strongly defended the UNOS system as efficient, equitable, and, if not perfect, then so good it certainly did not require political interference. Not coincidentally, Pritsker had spent three years as a consultant for UNOS. I had, however, been researching issues of equity and fairness in organ distribution for Toronto’s Hospital for Sick Children.24
In a letter to the editor, I suggested Pritsker’s model largely ignored both spatial and socioeconomic disparities.25 After all, as Robert Steinbrook put it, “Although the procurement system is national, patients’ access to it is not. Patients must generally either have health insurance that will pay for transplantation or [must] be able to pay for it themselves.”26 In a nation with, at that time, more than 40 million persons who lacked health insurance, this seemed a serious deficiency if equality of care was a goal. Where was fairness if the uninsured poor (wherever they lived) were asked to be organ donors but could not afford to be recipients? Where was the justice in a system in which regionalization and urban concentration favored some over others?
Pritsker’s condescending response led me to propose an article mapping the geographical inequalities Shalala had argued and Pritsker had dismissed. While his specialty was liver transplantation, and others had considered kidney transplantation, I chose to focus on hearts. Renal patients can live for years on dialysis, and for those who qualify medically, kidney transplantation is a nationally funded program in which questions of insurer or patient economics are dramatically lessened. Liver transplantation is complicated by that organ’s remarkable ability to fully regenerate if it is partially damaged. Partial liver resections can be performed without unduly endangering the lives of living donors. But for cardiac patients there is no life-supporting, dialysis-like treatment, no regenerative partial graft. Moreover, the ischemic rate of degradation is more rapid for the heart than for either kidney or liver. Finally, the heart has a mythos that, in an article criticizing a well-known, well-established expert like Pritsker, offered polemical advantages.
Substantiating the geographic inequities that Shalala described proved relatively easy. Using publicly available UNOS data, I located all US hospitals performing heart transplants, added to a worksheet the number of heart transplants each performed in 1996. From UNOS I collected data on mean wait times (MWT) for potential recipients at each hospital. If the problem was regional geographical disparity, then the question was not simply the average or mean waiting time per hospital or region. Rather, the real measure would be cumulative waiting time across the UNOS regions. Where Shalala had found, to her dismay, a disparity of five to one between patients from different cities, this broader regional measure reported a disparity as great as ten to one between different UNOS regions.
Figure 8.2 summarizes the geographic imbalances. The disparity between regions is evidenced through an eccentric color ramp designed to emphasize the differences in patient waiting times among the different UNOS regions. Including the urban clustering of transplant-performing hospitals made clear the locational inequalities of service that presumably contributed to regional disparities. In a supposedly national program, more than eleven states had no program at all. In other states, where hospitals were listed as transplant service centers, few or no transplants had been performed during the study year. The number of organs per hospital in a city determined the size of the circles used to locate them on the map. Regional disparities certainly seemed to violate the ethical framework set out in enacting legislation.
Unconsidered in either UNOS’s rebuke of Shalala’s proposal or Pritsker’s analysis was the need for patients from underserved cities and states to travel at their own expense to established urban transplant centers. Yes, persons from regions with few if any transplant services were getting transplants. But to do so, they first had to travel to other cities, states, and UNOS regions, where they might wait for months in hopes that an organ would become available. This “organ tourism” is rarely compensated by an insurer and requires patients seeking transplant organs to have not only health insurance but also sufficient monies to fund months of travel out of city and often out of state. Patients too poor to pay for that would not qualify as potential recipients and would thus from the start be off the UNOS list of transplant candidates.27
My close examination of these issues resulted in a series of journal articles, a doctoral dissertation, and, nine months after its defense, the publication of Scarce Goods: Justice, Fairness, and Organ Transplantation.28 The data used in those studies became the basis for an undergraduate student laboratory exercise at the University of British Columbia. In Geography 381, “Spatial Analysis using GIS,” which I cotaught with my friend Ken Denike, we asked students to locate new US hospitals to perform heart transplants. Students were required to justify their choices on the basis of geographical equity, efficiency, justice, or some combination of these criteria.
Not surprisingly, the choices depended on the criteria used. Students seeking maximum efficiencies (and profits) chose sites in major metropolitan areas near existing heart transplant centers. Others, seeking greater geographical equity, located their new centers in underserved western states and northern New England. The hope was that greater geographical equity would boost regional donor participation.
Several students suggested a North American program in which New England and Quebec would be joined into a single transplant region, and the underserved US Northwest would be partnered with Canadian prairie provinces (Alberta, Manitoba, and Saskatchewan). Alaska would be added to the British Columbia region. While this made good locational sense, it raised a series of jurisdictional problems. Not the least of these was the gulf between the US system of fee-for-service medicine and Canada’s commitment to universal healthcare. Bridging that gap, whatever the efficiencies, made the result an exercise in political ethics as well as a moral philosophy lodged in the landscape.
Look again at figure 8.1. There is, as one would expect, a New England region. Moreover, there is the Mid-Atlantic. But why is Illinois part of Region 7, hanging like an appendix, and not Region 10? Why isn’t New Mexico joined to Texas rather than California and Arizona? In theory, regionalization promotes the efficient distribution of services. Do the regions in fact provide equitable national coverage, or as Donna Shalala argued in the 1990s, are they a template for spatial inequities?
Table 8.1 is based on UNOS data describing total heart transplants between 1988 and 2014 by region. In it regional differences in performance are manifest. The number of transplants per UNOS regional population between 1988 and 2014 ranged from a low of 117.7 per million in the Pacific Northwest to 238 per million in the Mid-Atlantic states of Region 2. At the least, it seemed obvious that the regional system appeared to create persistent population imbalances that affected the number of organs donated and thus the number of procedures performed.
Figure 8.3 attempts to maps these regional disparities. It shows the number of heart transplants performed across UNOS regions between 1988 and 2014. To this is added the number of donations in relation to the number of transplantations across the same period. In keeping with the UNOS map’s light pastel color scheme, the variation in the number of heart transplants per region is presented similarly. The data are repeated a second time in bars that reflect the number of donations and heart transplants performed in each region. To distinguish my map from the official one, I used a different projection, one whose breadth contrasts with that of the UNOS conical equal-area projection.
The color scheme chosen at once acknowledges the presence of regional disparities and, in their pastel hues, mutes their importance. The addition of bars signifying the numbers of transplants per region clearly makes manifest the argument that equity is an unfulfilled promise. But neither the regional map nor the summary table (table 8.1) tells the real tale of geographic inequality that Secretary Shalala first argued unsuccessfully in the 1990s.
Regional mapping and statistics smooth the relevant data, rendering it invisible. Some states have organ procurement organizations but no transplant-performing hospitals at all. So organs donated in those states are shipped elsewhere in a region or to other regions. Figure 8.4 instead posts the number of transplants per state population. In the map, the raw number of transplants performed is signified by red bars located in cities with transplant-performing hospitals. Where two or more hospitals perform transplants in a city, their numbers were combined. In coastal areas like Los Angeles, the bars are set slightly off-coast for ease of reading.
Because the data are based not on where patients live but on where transplants are performed, some states now show no heart transplants at all. It is not that nobody in Montana or Maine received a heart transplant but that no patients received a transplant in their home states. Moreover, we do not know if the person transplanted at Cedars-Sinai Medical Center in Los Angeles is Alaskan, Californian, Chinese, Hawaiian, Japanese, or Montanan. Nor do we know if a patient at the Cleveland Clinic in Ohio comes from Cleveland or Saudi Arabia. The US system permits some US organs to go to foreign nationals who can pay the cost (approximately $1 million) of heart transplantation.29
Clearly geographic inequalities were and are inherent in the US graft organ system of collection and distribution. They appear to be based on the relative distribution of populations in the varying UNOS regions and the concentration of transplant-performing centers in major cities. Some would say such inequalities are unavoidable, at least if maximum efficiencies at minimum cost is the standard. That said, as some of our students argued in Geography 381, changes in regional configurations might lessen existing disparities. There is, however, a more fundamental problem, briefly mentioned in chapter 3: UNOS transplant data include only patients accepted to the transplant waiting list. What about persons without health insurance or, like Denzel Washington’s character in the movie John Q. (itself a careful case study of moral stress, distress, and injury),30 whose insurers would not pay for a lifesaving heart transplant for his son? Those who do not have sufficient insurance and cannot afford a transplant, as well as the postoperative drugs and treatments a successful transplant requires for the rest of a patient’s life, never make it onto the UNOS waiting list.
The UNOS system therefore is at best only as equitable as the national health-care system within which it is embedded. Poverty and wealth influence, where they do not determine, both the health of the person and the speed with which a patient may be added to the transplant waiting list. During the controversy over Shalala’s “Final Rule” in 1999, for example, patients who earned more than $40,000 a year were twice as likely to be added to the waiting list for kidney transplantation as those who earned less than $10,000 a year.31 And that procedure is universally funded by federal legislation.
More generally, for patients without health insurance, the likelihood of being accepted as a transplant candidate plummets. Think of the persons in Enders’s starred purple and red counties (fig. 5.1), and those living in the poorest sections of Buffalo (fig. 6.6) or New York City (fig. 6.2). All would be accepted as organ donors, but many would not qualify as recipients because they lack health insurance or family resources. They would be … off the map. Figure 3.4 was an early attempt to calculate the effect of income and insurance on the transplantation patient pool, using the percentage of persons without health insurance as an indicator.
While UNOS is, in theory, color-blind, the Institute of Medicine, referenced earlier, acknowledged that “African Americans are less likely than white patients to be referred for [transplant] evaluation and are typically placed on waiting lists at a slower rate.”32 The reason, the report explained, was not race per se but “socioeconomic status” (SES). Poor persons who lack health insurance or the monies for private treatment are less likely to be listed as organ recipients. If those patients happen to be nonwhite, the result is simply an unintended consequence of economic realities. That assessment, however, ignores the inconvenient fact that “race is an antecedent and determinant of SES and racial differences in SES reflect, in part, the successful implementation of discriminatory policies” resulting in poverty.33 We saw how this happens in the field of education in chapter 6.
Even where poverty is not an issue, persons of color are still less likely to be added to a transplant waiting list. In a stunning article in a national magazine, Vanessa Grubbs, an African American physician, reported that her partner’s needed kidney transplant was delayed for years in a manner that made racial discrimination hard to dismiss.34 Grubbs’s partner was, like her, an African American professional with good health insurance, a solid income, no history of alcohol or drug abuse, and a strong social support network. He was carefully “compliant,” taking all the medications he was prescribed. And yet he waited far longer than Caucasian patients in equal (or lesser) medical need. “Not once in my three years of training,” wrote Dr. Grubbs, “did I hear a nephrologist [kidney specialist] talk about referring anyone from our mostly black [local] patient population for a kidney transplant.”
For some, this was simply more proof of ongoing medical discrimination by white medical professionals treating African Americans. Here is the legacy of the Tuskegee syphilis project, in which poor blacks with syphilis were not treated with penicillin so that the study of disease effects could continue without interruption.35 Here, too, is the story of Henrietta Lacks and her immortal HeLa cancer cells, recently retold by Rebecca Skloot.36 Medicine has never been immune to patterns of general discrimination.
So it is perhaps not surprising that organ donation rates by African Americans were, throughout the 1990s, assumed to be lower than those of Caucasian citizens. To insist on a sense of altruism and beneficence in a context of historical racism and persistent socioeconomic bias is to ask a great deal. It is to presume communal solidarity for persons whose communal standing is limited. If persons believe themselves, their family, and their friends unlikely to receive organs, why should they donate? Would you?
When Dr. Grubbs and her partner asked about the delay in his organ receipt, they were told at least one reason was that African Americans organ donation rates are lower than those of Caucasian citizens. As a result, the likelihood of a precise organ match is similarly lessened. Nobody asked, apparently, if that was true.
In 2014 the US Health and Human Services (HHS) website posted UNOS-collected data on the ethnicity/race of graft organ donors by regional organ procurement organization (OPO).37 It also posted an ethnic/racial breakdown of graft organ recipients by transplant-performing hospital. Without patient addresses or at least postal codes, there was no way to know for sure where exactly patients came from: were they local residents or organ tourists from another city, state, or country? But the data did provide a means by which relative rates of organ donation and receipt by ethnicity/race could be calculated, if not, alas, accurately mapped.
Between 1988 and 2014, 75 percent of all heart transplant recipients were white. Of the remaining 25 percent, 15 percent were African American, 7 percent were Hispanic, and 2 percent were Asian American. The remaining 1 percent included foreign patients, Native Americans, or those whose ethnicity was unknown. Census figures for 2010 reported that approximately 72.4 percent of American citizens were white, 12.5 percent were African American, and 16.3 percent were Latino. Going solely by these figures, therefore, it would seem nationally that inequities, if any, most seriously affect the Latino community, whose members receive fewer than half as many transplants as one would expect based on a percentage of national population.
Those national figures are too coarse, however, to be definitive. What is the ratio of organs donated and transplants performed by ethnicity at finer scales with more precise resolution? I used the HHS data to create a new set of spreadsheets. The first included the total number of heart transplants performed since 1988 at each UNOS-listed hospital and the reported race of those donors. The second recorded the ethnicity of transplant recipients reported by the OPO collection agency in the catchment in which the hospital was located.
Without better spatial data locating donors and recipients (their zip codes or home counties, e.g.), it was impossible to know the actual home city of an organ’s donor or its recipient. Accurate mapping was therefore impossible. Instead I chose tables as the best medium to explore imbalances between organ donation and receipt by ethnicity/race. As a kind of proof of principle, and a way to check the thesis that persons of color are not donors, I calculated rates for three US cities.
I began with Buffalo, New York, where ethnicity and income were seen, in chapter 7, to influence quality of education and general health status among students. US Census Bureau web pages provided base information on the city’s demographic profile.38 Organ donations from 1988 to 2014 were reported through the Buffalo-based OPO, Upstate New York Transplant Services, whose catchment extends toward Cleveland in the west and Rochester, New York, to the east. Heart transplants were reported at three different Buffalo hospitals: Children’s Hospital, Buffalo General Hospital, and the local VA hospital.
White citizens, who make up about half the population of metropolitan Buffalo, received 89 percent of all hearts transplanted between 1988 and 2014. African Americans, who make up 38 percent of the population, received just 6 percent. Latinos, who in 2012 made up almost 11 percent of the population, received 4 percent of all hearts transplanted at Buffalo’s three heart-transplant-performing hospitals during the study years. These imbalances were not reflected in donation rates, however. African American organ donations were significantly greater than the percentage of transplants performed on members of those communities. Latino donations were lower than the relatively meager percentage of transplants performed on community members.
The percentages in table 8.2 do not precisely sum to zero. There are two reasons for this. First, some people report themselves as being of mixed heritage, and that category is not included in this table. Moreover, there are small groups—for example, Europeans or Pacific Islanders—whose members are not represented in this general summary but who were patients in area transplant hospitals. For the sake of clarity, those very small communities were ignored in this table.
Is Buffalo unique? Are the apparent imbalances between donation and transplantation by ethnicity/race a local anomaly? To consider that proposition, I generated donor and transplant profiles first for New York City (table 8.3) and then for Los Angeles (table 8.4), both large, multiracial cities that are home to multiple transplant-performing hospitals and extremely active OPOs. In these tables, there were sufficient populations of Pacific Islanders (“Pacific”), primarily Hawaiians in Los Angeles, and First Nations communities (“Native”) to warrant inclusion. In addition, the numbers of those reporting a mixed ethnicity were sufficiently large to include as well.
The startling statistic that the Caucasian population of New York City is under 35 percent of the metropolitan population of 8.34 million requires a word of explanation. US Census Bureau statisticians do not consider “Hispanic” or “Latino” a race but instead a cultural or at best ethnic classification. Thus persons who identify themselves “ethnically” as Latinos must also identify themselves with a race, most often “white.” To clear up the confusion, the US Census Bureau statisticians created the category “white (not Hispanic or Latino).” The census data thus include two categories, “white” (44 percent of the New York population) and “white, not Hispanic or Latino” (about 33 percent of the population). Only by using the latter percentage did the ethnic profiles sum to 100 percent.
White (not Hispanic or Latino) New Yorkers donated 39 percent of all hearts transplanted since 1988 and received in return 62 percent of all hearts transplanted at New York City hospitals. African American donations were significantly lower (22 percent of all donor hearts), but that figure well exceeded the percentage of heart transplants community members received (17.71 percent). Of the three major population divisions, Latinos were relatively generous, with 32.4 percent serving as active heart donors; but with the receipt of only 14.5 percent of hearts transplanted, Latinos far less well served than either African American or Caucasian neighbors.
The situation is even more imbalanced in Los Angeles. In table 8.4, US Census Bureau population data anchor a comparison of ethnic/racial donation and transplantation rates in the Los Angeles County area.39 Again “white” as a census category represents 50.7 percent of the population but is severely reduced when “white (not Hispanic or Latino)” is used in its stead. And, again, only the lower figure permits the rest of the census profile to sum to near 100 percent. Even so, the numbers do not quite sum because of a small percentage of cases listed as ethnicity “unknown,” likely reflecting nationalities not included in the questionnaire (Mongolian, Monrovian, Tibetan, etc.) or questionnaires not properly completed.
Unlike New York, where more transplants were performed than organs were received from donors, there was in Los Angeles a surplus of organs donated and presumably then dispatched to other transplant centers in Region 5. In Los Angeles, white Angelenos, representing 50 percent or less of the population (depending on the way “white” is categorized), received the majority of hearts, over 64 percent. Latinos, while representing more than 47 percent of the area population, received only 15.44 percent of the hearts transplanted during the study period. That was less than half the percentage of the organs they donated. In this case, white donations (52.6 percent) were lower than the percentage of organs received (64.2 percent), and African American Los Angelenos donated fewer organs (7.9 percent) than they received as a community (10.7 percent). Latino donations (35.4 percent of all donated hearts) were more than twice the percentage of transplants performed (15.4 percent).
If these cities are an example, then these tables at the least support the idea that ethnic and racial shortages of organs for persons of color are not simply the result of the communities’ failure to donate. Moreover, these coarse comparisons insist that fundamental racial imbalances do indeed exist. Look again at figure 6.9, the Economic Innovation Group’s map of distressed American cities. The most distressed are typically large cities with multiple organ transplant centers and significant percentages of nonwhite citizens. If the pattern holds in those places, then it certainly challenges the equity of the system and the self-confident insistence, quoted earlier, that “no part of the health care system has done more to resolve questions of justice than transplantation.”
From the start, the US system of graft organ transplantation was based on two very different perspectives. The first was moral, advancing justice in an equitable system available to all citizens in need irrespective of a needy patient’s ethnicity or finances. Ethically, altruism and beneficence were to be the motive force for donors, whose “gift of life” might be matched by a similar gift to them or their loved ones in need. The operative principle governing relations between donor and recipient groups was to be reciprocity among citizens, giving and getting as partners in a community and nation. The second was economic and thus focused on cost efficiencies, which financially, geographically, and socially distanced some Americans from the lifesaving care they needed. The first principle has long been trumpeted, but it is the second whose ethic has dominated.
Mortal and moral harm is done to those whose chances of receiving a graft organ are diminished or denied by dint of a combination of ethnicity, location, and poverty. As OPO members push aggressively for a donation when a loved one is injured, perhaps unto death, moral stress is suffered by the patient’s families whose acquiescent participation is demanded. Should African American or Latino families ignore disparities for some greater good or deny donation because the likelihood of reciprocity is low? How must Dr. Grubbs and her partner have felt when told that his transplant was delayed time and again? How do we feel about a system so aggressively advertised and promoted that appears to fail in its legal promise of equality and justice?
UNOS officials might say their job is to collect and distribute graft organs as efficiently as possible. It may be that transplantation rates reflect inequalities built into the US system of health care and employment-based health insurance. It may be that socioeconomic disadvantage affects some groups more than others. None of that is the business of UNOS. If there is a problem, it is for Congress to fix. If the economics of race are an underlying issue in these disparities, UNOS cannot be held accountable. And if regionalization creates disparities, contemporary administrators might protest, those disparities exist in a system designed by experts decades ago. It’s not their fault.
Similarly, the Institute of Medicine analysts of the 1990s might say they were not asked to look for economic, ethnic, or racial disparities in the UNOS data they were given to analyze. They were not told to consider patients who never made it to the transplant waiting list. The analysts did their job, which was not to unearth inequalities buried in a system that trumpets its moral virtues and ethical propriety. Had they been given that task, then perhaps their conclusions would have been different. They, too, did their job with the UNOS data they were given. The local hospital’s shills for their transplant programs will point to the lives they have saved through transplants. If doing so requires an aggressive hand with the families of this or that patient, well, look at the good that results. It’s … their job.
Some might even say none of this really matters: Who cares if folks in less-populated states have to mortgage their farms and homes to travel to cities with transplant-performing hospitals? So what if the system is weighted toward the well-to-do and thus the white? The fine moral declarations enshrined in law are just ideals that in practice sometimes get lost. What is important, some might say, is that since 1988 UNOS has collected and distributed thousands of organs and has done so quite efficiently. Lives indeed have been saved as a result.
And really, if there were a problem, wouldn’t bioethicists, the self-appointed guardians of medical ethics, be criticizing UNOS? Since 1988 scores of medical ethicists have engaged in an “at times almost scholastic” debate focused on the imbalance between organ donation and demand.40 Some have argued for a market in organs with remuneration to donors, an idea that others (like me) have flatly rejected. Most have vocally criticized the organ tourism that takes the wealthy of one country (e.g., Israel) to another country whose poor become their organ providers (e.g., Turkey).41
Most bioethicists have been resolutely silent, however, on the American context in which the desperately ill may be required to travel at their own expense hundreds if not thousands of miles to enter transplant programs where the organs they eventually receive may come from donors who by dint of poverty (or race) had little hope of being recipients themselves. Bioethicists have similarly been generally silent on the possibility of systemic inequities and inequalities based on socioeconomic criteria, which, in turn, are heavily biased by ethnicity and race.
It is unlikely that the materials I present here will have much effect. The research is tentative and incomplete. Because publicly available data do not include donor or recipient home addresses, zip codes, or even counties, I can’t say if the heart transplant recipient at Buffalo General Hospital is from Buffalo or Saudi Arabia. I can’t say if the donor is from Buffalo, elsewhere in the OPO, or perhaps a surplus organ donor from … Ontario. I can suggest strongly but not prove absolutely a consistent and precise correlation between ethnicity and income, on the one hand, and organ receipt, on the other. The data are suggestive but certainly not definitive. A series of tables comparing donation by race and transplant service in the most and then least distressed cities described in the EIG report (fig. 6.9) would be instructive, if still not definitive.
The clear harm is that we do not even ask about these things. We do not question the distance between the morals we espouse, the ethics that seek to implement them, and the inequities and imbalances these maps and tables appear to describe. Since Secretary Shalala’s Final Rule and the subsequent political firestorm it created, neither politicians nor researchers have been anxious to question the status quo. Until they do, we are left with that queasy feeling where everyone does his or her job while carefully ignoring the divide between, on one side, broadly shared moral definitions and their resulting ethical propositions and, on the other, their apparent failure in practice.
Clearly, the ethics of graft organ transplantation are enfolded in the greater issues of inequalities of income, education, and healthcare. Of course those differences are going to be reflected in transplantation rates. Education affects long-term income, which affects a person’s health. Lack of education means less likelihood of anything but a precarious job, and that means a person is less likely, in the United States, to have comprehensive health insurance. None of this should be ignored, but in the ongoing discussion about graft organ supplies, it is almost never mentioned. The moral crime here is that UNOS officials and medical ethicists apparently accept a near-complete disconnect between morals and practice. They never argue our ideals as a rationale for changes in health care in the United States. Inequalities in organ transplantation thus become, in this reading, a symbol of a greater set of moral injuries and harms resulting from economic and social inequalities embedded in the practical realities of medicine and health care in the United States.
If we believe in equity and equality, in fairness and justice, then those must become the presuppositions against which we test the realities of our world. Should we ignore them and advance marketability or system efficiencies as our prime virtues, demoting fairness and justice as secondary concerns? That is one possibility, and one that seems to be the default choice. But in doing so, we abdicate any pretense of allegiance to the morality that we proclaim as governing the ethics of the programs we have created in a nation we insist is ethically robust and morally strong.
Imagine the effect if UNOS officials or Institute of Medicine analysts said, “Sure, there’s a problem. But it is greater than our program.” They then might of necessity become advocates for laws requiring insurers to pay the expenses of patients who need to travel to the urban centers where transplants are performed. They might insist that, for the law’s moral posture to be fulfilled, the nation must make all transplantation, not just kidneys, a nationally funded trust. At the least, they could acknowledge and seek to correct the manner in which efficiencies of scale have trumped the declared virtues of equality, fairness, and justice.
Nor are any of us free of responsibility for the system as it exists or the changes that might be needed. We sign donor cards. We sanctimoniously promote our virtue by participating in the system as it exists today. News outlets annually lobby for readers and viewers to get with the program. Because the national graft organ system was legislated on the basis of a moral structure that we accept as defining (equality, justice, and fairness are American bywords we trumpet to the world), we could as citizens insist on reform before signing graft organ donor cards. At the least, we might acknowledge and protest the means by which some are denied and others are delayed in the provision of the “gift of life,” whose promise is supposedly equality for all.
Or, like the statisticians who collect the data and the officials who administer the program, we can shrug and say that it’s perhaps unfortunate but not our business. That is, we can do so until a friend or loved one urgently needs a graft organ whose receipt is delayed by ethnicity or denied on the basis of location, income, or simply “socioeconomics.” Until then, it’s easier to ignore the moral promises we make and then in practice deny. Consequences be damned. Virtue ethics are something best left for the other guy.