To Restore FAITH AND TRUST:Justice and Biological Access to Cellular Therapies
Stem cell therapies should be available to people of all ethnicities. However, most cells used in the clinic will probably come from lines of cells stored in stem cell banks, which may end up benefiting the majority group most. The solution is to seek additional funding, earmarked for lines that will benefit minorities and offered as a public expression of apology for past discrimination.
Due to a coincidence of demographic and biological factors, the therapeutic benefits of stem cell science may turn out to benefit some ethnic groups more than others. Most of the cells used in the clinic will probably be derived from lines of cells maintained in stem cell banks,1 but these lines will work better for some than for others, and a real possibility exists that minority ethnic groups will be underserved—again. Even though these biodemographic disparities do not arise from racist policies, they may exacerbate the effects of racial injustice wherever a population predominantly of European descent has discriminated unjustly against minority ethnic groups, as in the United States and Canada, much of Europe, and Australia and New Zealand.
These disparities of access raise important questions of justice that demand an appropriate policy response. One prominent group of scholars, organized by the Program in Cell Engineering, Ethics and Public Policy at Johns Hopkins University, has recommended redressing any disparities by weighting the selection of banked stem cells to achieve ancestral/ethnic balance.2 I was a dissenting member of that group. In this paper I will argue that a better policy response reconceives what seems only to be a problem as an opportunity to do a much-needed good. I begin with a brief explanation of the biological and demographic root of the issue.
Biodemographic Disparities
Cellular therapies will probably have the best clinical outcomes when the implanted stem cells provide a close immunological match for the recipient.3 If banked stem cells lines are an important [End Page 57] source of cells for therapeutic use, then an individual's chances of benefiting from the therapies may depend on finding a good tissue match among cell lines in a publicly accessible stem cell bank.
The problem is this: because human tissue types are very variable (both between individuals and between ancestral/ethnic groups), providing a banked match for everyone would require the establishment and maintenance of a prohibitively large number of cell lines. However, in the United States, as in other regions with a majority white population, a stem cell bank designed to cover as many people as possible with a limited number of lines would disproportionately exclude people of non-European descent. The demographic reason for this disparity is simply that maximizing coverage requires banking the lines that match the commonest tissue types—a strategy that tends to favor members of the most populous ancestral/ethnic group. Biology adds to the demographic disparity because there is less overall variability of tissue type among people of European descent than among people of other major ancestral/ethnic groups. In the United States, for example, the commonest tissue types among European Americans are shared by a larger proportion of that group than are the commonest types among African Americans.4 Thus, both demographic and biological factors may contribute to ethnic inequities when stem cell lines are banked for therapeutic use.
Policy Options
Biological and demographic inequalities are not new, and neither are policy responses to them. Disparities are already found in access to tissue and organ transplants. For example, in the United States, African Americans, though more likely to need a kidney transplant, are less likely to find a well-matched donor organ than are white Americans. This biological difference contributes to waiting times for kidney transplants estimated to be twice as long for African Americans as for whites.5 It has been estimated that relaxing the criteria for transplanting partially matched kidneys would increase transplants for African Americans, although at some small cost in terms of increased graft failure.6 The United Network for Organ Sharing adopted this policy on grounds, it said, of "justice, fairness and equity."7
In stem cell banking, as in kidney transplantation, there are policy options that could mitigate potential disparities. The options are quite different between the two contexts, however. In the allocation of cadaver kidneys there is no control over which tissue types will become available, and each organ is available only to one recipient, no matter how many might benefit from it. In the context of stem cell banking, by contrast, it would be possible to control which tissue types are made available, and a single line could be made available for multiple recipients.
Three policy options were considered in the Hopkins' group's proposal for therapeutic stem cell banking, and each merits discussion, although I will recommend a fourth option. On any option, some people will not find a well-matched cell line, but might have had a different policy been adopted, and some defense of the policy must be offered to those who will miss out as a result.
Maximize coverage.
The most obvious strategy is to seek to provide a good tissue match for as many people as possible by including the commonest tissue types in the population served. This strategy has the clear merit of maximizing potential clinical benefits in the face of limited resources for establishing and maintaining stem cell lines. In addition to serving more people, a coverage-maximizing strategy might promote the development of cellular therapies. Privately funded research is likely to be an important source of the therapies that eventually become clinically available. A coverage-maximizing public bank is likely to increase the potential market for such therapies, and thereby to increase the motivation for private enterprise to prioritize their development. Thus, a coverage-maximizing strategy may be doubly maximizing.
Individualist lottery.
If we cover as many people as possible, we must acknowledge that some will still miss out. If there are resources to bank 200 stem cell lines, then people who fall 201 or lower in the tissue type ranking may be unable to enjoy full biological access to the benefits of a coverage-maximizing bank. Some of the excluded will have tissue types so rare that providing a match is literally impossible, but others might have had a chance of biological access if not for the coverage-maximizing policy. The moral landscape is akin to well-known rescue scenarios: There are two islands with people stranded on them. There is time to rescue the people on either one of the islands, but those on the other island will surely drown. If one of the islands has more people on it, does that give a moral reason to rescue them and leave the smaller number to drown?
Many think that there are obvious moral reasons to save the greater number, but this has been disputed. Jens Timmerman, for example, argues that the abandoned few would have grounds for an injustice complaint that isn't answered by extending a benefit to more people.8 Those excluded by coverage maximization might point out, rightly, that each of them is no less deserving of rescue than someone with a common tissue type. They might, more contentiously, argue that if we deny any chance of rescue for those in the smaller group on grounds of simple summing of rescuable lives, then we fail to accord due respect for the value of individual persons; we illegitimately treat them merely as fungible placeholders for utility.
Timmerman argues that we accord proper respect for individuals not by directing rescue efforts on the basis of impersonally counting lives, but by giving everyone who can be saved an equal chance of selection in an "individualist [End Page 58] lottery." For stem cell banking, the lottery would work this way: Whoever is selected will have her tissue type represented in the bank. All those with compatible tissue types will share in her good fortune. If resources permit, the next winner of the individualist lottery will be selected for tissue type inclusion, along with those who match the same cell line. Timmermann's procedure is likely to approximate coverage maximization because, by definition, there are more individuals with common tissue types in the lottery. However, such a policy takes the chance that it will provide significantly fewer benefits than those achievable by aiming to maximize coverage.
There are many reasons to doubt the case for an individualist lottery, especially in the context of a public stem cell bank. First, rescue scenarios notwithstanding, it is legitimate policy to aim for the widest benefit from available resources. Taking account of the number of people who might be helped neither implies lack of respect for individuals, nor disregard for those who may not be helped.
Further, even if there were some reason to agree that saving the greater number implies lack of respect for individuals, rescue from a desert island may not offer an appropriate analogy for the construction of a public stem cell bank. The bank is not faced with choosing particular individuals in need of present rescue. A better analogy is to be found before the unfortunates washed onto the islands, back while they were still aboard their foundering passenger ferry. We realize, back on shore, that people will soon be taking to the forbidding waters and will have to make for one of two nearby islands, North Island and South Island. Based on our knowledge of local currents, we also know that, although both islands will provide temporary refuge for some people, many more people will make it to North Island (again, the analogy is with the commoner tissue type). If we launch now, we can effect a rescue from one of the islands, but we will not be able to make it to the other island before it is overwhelmed by the tide and everyone on it is lost. Should we head north or south?
As we set off we don't know who will make it to which island (we don't know who has common and who has rare tissue types), but we do know that if we head north (if we include commoner tissue types in the bank), we will be able to save more people, whoever they may turn out to be. The prospect of saving as many as possible gives a clear reason to head north. Now, how can individual complaints about injustice even get started? As long as we are all in the same boat (whether literally or metaphorically) when the policy decision is made, it will not make sense for anyone to complain that the decision indicates a lack of respect for their worth as an individual. Moreover, knowing which policy will save more people without knowing who, rational-self interest recommends endorsing coverage maximization. Not only would the individualist lottery be poor public policy, therefore; one would also be foolish, from a self-interested point of view, to endorse it (absent knowledge of one's own tissue type). For these reasons, I reject an individualist lottery.
Ancestral/ethnic representation.
Both coverage maximization and an individualist lottery are likely to be subject to biodemographic disparities that fall along ethnic lines. This could be addressed, at the cost of reduced overall coverage, by selecting tissue types to ensure rough parity of representation within different ancestral/ethnic groups.
One argument for an ancestral/ethnic representation strategy appeals to existing health disparities. Of course, the mere fact that a policy will increase existing health disparities does not show it to be wrong. A policy intended to reduce mortality due to breast cancer, for example, might increase existing disparities in life expectancy between women and men, a consideration that tells little against the policy. However, unlike disparities of female and male longevity, the disparities mimicked and exacerbated by a coverage-maximizing stem cell bank are grounded in historical and ongoing injustice:
Insofar as [health] disparities are understood as present injustices, at the very least, public policy should not be formulated in ways that make them worse. Insofar as they are the result of past injustices, as members of the society that produced them, we have an affirmative obligation to take steps to ameliorate them.9
However, it has been pointed out that the existence of unjust health disparities, though giving reason for some remedial policy, does little to recommend ancestral/ethnic weighting in particular; it is likely that there will be better ways to reduce such disparities.10 [End Page 59]
A more interesting argument is that a coverage-maximizing strategy would send a harmful message to ethnic minorities. Racial disparities in a coverage-maximizing bank would be striking. Although the underlying reason for the disparities would be biological and demographic, it would be reasonable "given the history of American race relations, and of the medical profession's treatment of nonwhite Americans," for members of minorities to "wonder whether their interests had been taken seriously." In this context, a policy of ancestral/ethnic weighting has been endorsed as ensuring "the greatest amount of benefit . . . consistent with an expression of respect for the fundamental equality of members of . . . ancestral/ethnic groups," and coverage maximization has been rejected as "signal[ing] a failure to acknowledge the equal worth of persons of all ethnic groups."11
One strategic weakness of the expressive harm argument (a weakness shared by the argument from existing disparities) is that it makes what I call bald and one-legged appeals to duties. A bald appeal comes with no covering explanation or justification of the duty being asserted. A one-legged appeal is unsupported by any discussion of how to balance the claimed duty against other plausible and potentially competing duties.
At the heart of the expressive harm argument is a duty "to avoid giving some persons reasonable grounds for concern about whether they are regarded as full and equal citizens whose interests are taken seriously, especially when those concerns have often been well founded."12 This is a plausible prima facie duty, but it is certainly not inviolable. Like all prima facie duties, it must be balanced alongside others. But the argumentative alopecia of the expressive harm argument hinders this balancing. Without covering explanation and justification to elevate the claimed duty above mere ad hockery, we have little basis on which to assess the duty's scope and strength, and to balance it alongside others.
Other plausible duties include presumptions for spreading public benefits as widely as possible, and against targeting public resources on grounds of race. The larger number of people who will lose out for every beneficiary of ancestral/ethnic weighting13 might complain that these duties are more pressing than an alleged duty to avoid giving even a mistaken impression of racism. Lacking either an argument to show that the claimed duty trumps competitors, or a demonstration that the apparent conflict can be avoided, the expressive harm argument does not justify a policy of ancestral/ethnic representation.
An Argument from "Expressive Good"
Here is a positive suggestion: we should not only try to avoid harm, but should also look for opportunities to do good. The opportunity I see in this instance is very much grounded in the history of racial injustice and ongoing disparities in the United States. These are serious wrongs that do ongoing harm and must be righted. I will argue that apology for past wrongs (or at least public expressions akin to apology) can have an important role in righting those wrongs, and that the potential biodemographic disparities of a public stem cell bank actually provide an opportunity to contribute to this expressive good.
My policy suggestion is twofold. A first, and tentative, suggestion is that coverage maximization is the appropriate strategy for a public, therapeutic stem cell bank. At the very least, because coverage maximization spreads the benefits that accrue from this use of public funds as widely as possible, it is the strategy to beat. I have argued that it is not beaten by either an individualist lottery or by ancestral/ethnic representation. Nevertheless, policy decisions will need to be made in light of technical and political realities at the time the bank is actually established. These realities may alter the balance of competing considerations and may shift the landscape of relevant policy options. For example, instead of targeting the bank's final composition, it may be more practical to focus on how to find donor cell lines; that is, to focus on procedural rather than on distributive justice. The final composition of the bank would then depend on the tissue types of those who actually donate—a result that might satisfy those who would prefer an individualist lottery.
The second part of my policy suggestion looks beyond the immediate debate about the establishment and basic constitution of a stem cell bank. Whether a bank maximizes coverage, employs some kind of lottery, or focuses on procedures for obtaining donor cell lines, I propose that serious consideration be given to finding additional funding for the purpose of banking stem cell lines that target the African American community. This is not a reallocation of resources within the bank, but a call for supplementary resources. This is also not a demand on any one source of funding, but a broad call to contribute. U.S. society, individual states, and the medical community in particular should be alert to opportunities to affirm their repudiation of the attitudes evident in slavery, in Jim Crow, and at Tuskegee. For these groups to contribute publicly toward this expansion of a stem cell bank might be to take one opportunity to accomplish an expressive good.
Emerging discussion of the role of apology in righting wrongs and restoring broken relationships provides a helpful model for understanding my proposal. Apology is a very important part of personal moral life and an increasingly prominent part of public life.14 Some public apologies are expressed by an individual to a group; one thinks of President Clinton's apologies to the nation following the Lewinsky debacle.15 Other public apologies are expressed on behalf of one group to another group; one thinks of Clinton's apology on behalf of the nation for the Tuskegee syphilis [End Page 60] study,16 and of the U.S. Senate's apology for its repeated blocking of federal action to stop lynching.17 Acknowledging the importance of apology does not require commitment to a specific ethical theory. Whether it is a strict duty or not, apologizing is a principled way to promote welfare by treating people as ends in themselves.
If apology is understood as requiring, in part, an expression of remorse and an acknowledgement of moral responsibility,18 then there is certainly room to wonder whether declarations between groups can really be apologies. Although individuals can feel remorse and be held accountable for their actions, it is not clear in what sense these notions can truly be said to apply to nations, corporations, professions, and other collectives. Nor is it obvious how a group can accept an apology. There is even more room to doubt whether the idea of apologizing for historical wrongs is coherent if many, or all, of the direct perpetrators and immediate victims of the wrong are already dead. Who can legitimately offer or accept such an apology?
The Tuskegee story is illustrative both of the problem and of its solution. Clinton's apology was blunt and free of hedging: "What was done cannot be undone, but we can end the silence. We can stop turning our heads away, we can look at you, in the eye, and finally say, on behalf of the American people, what the United States government did was shameful, and I am sorry." By the time the wrong done at Tuskegee was officially acknowledged, there were only eight known survivors of the study, most of the experimenters were already dead, and the person making the apology had personally had no hand in the abuses. Yet when Clinton offered it, five of the eight survivors were in the White House to receive it on behalf not only of themselves, but of all those who had been wronged. Herman Shaw, a ninety-five-year-old survivor visibly affected by the event, asserted, "It is never too late to work to restore faith and trust."19
Shaw's insight cuts through quibbles about the propriety of describing what Clinton did as apologizing: it does not matter what we call it. Everyone involved recognized that the act contributed to repairing the damaged relationship between the United States and a wronged group of its own citizens. The apology works its expressive good by acknowledging the wrong, by repudiating the racist denigration of African Americans that it reflects, by reaffirming the full worth of those who have been treated as less worthy, and by indicating the resolve not to repeat the offense. Regardless of personal responsibility, it behooves us, both as individuals and as members of groups associated with wrongdoing, to distance ourselves from injustice and to align ourselves firmly with full respect for all people. I will speak of group "apology" in line with emerging usage; those who object may substitute their own preferred locution without in any way diminishing the importance of the practice.
The Tuskegee apology, though helpful, does not wipe out the wrongs done to African Americans. An appropriate response for profound and enduring wrongs must be an ongoing process. Furthermore, for group apology to succeed, it must be visibly affirmed in the actions of the group, not just in the words of its representatives. If an apology stops at "just words"—even presidential words—it is probably not deeply felt and is likely to be seen as insincere.20 Among other things, those who feel genuine regret for past wrongs are motivated to take practical steps to redress the damage done. By contrast, the insincerity of an apology unaccompanied by willingness to offer what Govier and Verwoerd call "practical amends"21 may be worse than no apology at all. On the Senate's lynching apology, Julianne Malveaux writes, "Does the apology mean anything? Not unless the Senate also does something more tangible."22 Commenting on talk of a Congressional apology for slavery, Jesse Jackson writes that government apology is "a valid collective symbolic act, but it is appropriate only if it is accompanied by substance that repairs the damage that is the basis for the apology."23
Regardless of doubts about group apology, to express the repudiation of evil and to reaffirm the worth of those who have been wronged is to do an important good. To offer practical amends in the form of additional funding to bank stem cell lines targeting the African American community can constitute an expression of this repudiation and reaffirmation. The problem of biological access to stem cell banks, because it mimics and thereby symbolizes a history of racial injustice, actually presents an especially apposite opportunity for expressive good.
Like the ancestral/ethnic weighting strategy, funding additional stem cell lines will mitigate the biodemographic disparity of the bank. Even so, a [End Page 61] policy grounded in expressive good does differ from ancestral/ethnic representation in both its implications for the bank's composition and in its moral meaning. The compositional implications are different because the argument from expressive good does not target a quota for ethnic representation, nor does it automatically apply to all ancestral/ethnic groups. Actually, it is quite unclear why arguments centered on the injustices suffered by African Americans support a policy of equal representation for "each of the major ancestral/ethnic groups in the United States."24 Undeniably, African Americans have not been the only targets of racism and racist policies, but one should not assume that an offer of practical amends appropriate to the wrongs suffered by one U.S. ancestral/ethic group is appropriate for all.
Offering practical amends should not be confused with payment of compensation or reparations. Reparations aim to wipe out harm done by making good the resulting losses. Practical amends may repair some of the damage done by a wrong, but they do not pretend to restore the offended party to an unharmed state. The notion of reparations for historical wrongs has difficulties—it requires us to make sense of present responsibility for the wrongs of our ancestors and to compensate the dead.25 But these difficulties are not relevant to my proposal. Practical amends are not offered as compensation or reparations, but rather as substantive tokens of the unreserved repudiation of the attitudes inherent in past wrongs, of the sincerity with which lingering effects of those wrongs are regretted, and of the resolve to do better. Indeed, to suggest that funding additional stem cell lines should be accepted as full and final reparations would be an insult to the magnitude of the historical harm.
It is reasonable to wonder if my proposals are susceptible to the same accusations of unjustified exclusion faced by the ancestral/ethnic representation policy; reasonable, but mistaken. The structure of the ancestral/ethnic representation policy ensures that any decision to select a specific line must be offset by the exclusion of some other line. If some lines are selected in order to achieve a target ancestral/ethnic balance, other lines that would otherwise have been included (and would have covered more people) are necessarily excluded on the grounds that too many of those covered would be of the nontargeted ancestral/ethnic origin. This raises the possibility that some may complain about having been unjustifiably excluded on racial grounds.
My suggestion assumes that decisions about core funding and tissue types for a public stem cell bank are made on clinical and practical grounds, without regard to race. It is likely that such a bank will reflect a biodemographic disparity that will confer significantly more limited benefits on African Americans than on those of European descent. This presents an opportunity for an important expressive good. But the proposal to underscore repudiation of racial injustice by funding additional lines does not have the zero-sum structure that would imply coverage-maximizing lines must be excluded to free up resources for targeted inclusions. Banked stem cell lines are not traded off against additional lines, they are augmented by them, creating a policy that includes more people without excluding anyone who would otherwise have benefited in the underlying bank.
The aim of the core bank is clinical benefit. The aim of the proposed additional funding is quite different: to underwrite the sincerity of an expressive good. It is essential to such an offer of practical amends that the resources for additional lines be genuinely over and above the resources that the bank would otherwise have enjoyed. All cell lines selected for inclusion in the core coverage-maximizing bank will remain in the augmented bank. If this requirement is not met, the policy would risk collapsing back to an attempt to avoid the appearance of racism at the expense of a greater number of people who would otherwise have been included by a fully funded and unweighted bank. In practical terms, this requires that decisions about the core bank be taken quite separately from those about achieving the suggested expressive good.
Consider an interpersonal analogy: if I offend you, I might give flowers with my apology. The point is not that you need flowers, or that your flowers should be funded. The driving consideration is that giving flowers can help me achieve a desired expressive good. With historical injustice, as with interpersonal wrongs, the driving issue is the need to make practical amends. My suggestion is that, because it mimics and thereby symbolizes a history of racial injustice, the potential biodemographic disparity in stem cell therapy may present an opportunity to go beyond the bare demands of refraining from further injustice by offering appropriate practical amends. I have mentioned U.S. society, individual states, and the medical community as three examples of groups that should be alert to such opportunities. However, the appropriateness of taking this particular opportunity will turn on considerations specific to each group.
Federal and state governments will need to consider the propriety and legality of using public funds in a way that explicitly targets race. Some may see the suggested policy of expressive good as inevitably, though indirectly, excluding people on racial grounds because, even if public funds used for the suggested practical amends would not have been used to finance a larger pool of coverage maximizing lines, that such funds could have been so used is inescapable.
Though I have doubts about the inevitability of governmental impropriety in financing initiatives that target race, I accept that the desired expressive good might be politically impossible to achieve by targeting lines for a stem cell bank. Complaints of unjustifiable racial favoritism, even if mistaken, might fuel political argument [End Page 62] that would undermine the desired expressive good of clearly and unambiguously repudiating injustice. This doesn't mean that governments should not make practical amends; rather, other ways of offering amends might be preferable. One example of an alternative and less politically difficult way of making amends is the research ethics funding offered along with the Tuskegee apology, which, while appropriate in the context, did not explicitly target a particular race.
Professional organizations, private groups, and individuals do not labor under the same political and legal constraints as governments. In the context of stem cell therapy, it is especially fitting for groups and individuals allied to the medical professions to consider making significant contributions to fund additional stem cell lines targeting African Americans. Again, my point is not that private entities should step in to meet a particular funding need; it is that they should repudiate injustice, especially when they are historically associated with it, and that this would be an opportunity to do so. When the American Medical Association reviews its profession's history of complicity with apartheid in the United States, and when individual hospitals consider their segregated past, the substantive tokenism of contributing to this kind of practical amends would underwrite a sincere, public rejection of injustice and a reaffirmation of the worth of those who have been wrongly marginalized: a valuable expressive good.
Mark Greene is a faculty member of the Department of Philosophy at the University of Delaware. A former veterinary surgeon, his interest in justice and stem cell therapy developed while a Greenwall Fellow in Bioethics and Health Policy at Johns Hopkins and Georgetown Universities.
Acknowledgments
I would like to thank my colleagues in the Program for Cell Engineering, Ethics and Public Policy and in the Working Group on Ethics and Cell Engineering, particularly Ruth Faden, who invited me to participate. Thanks also to John Tilburt and delegates at the 2004 annual ASBH meeting in Philadelphia and to my colleagues in the Department of Philosophy at the University of Delaware for very enriching discussion. Thanks to Talia Greene, Gregory Kaebnick, and anonymous Hastings Center Report reviewers for their careful reading and insightful and challenging comments. I am grateful to the Greenwall Foundation for their generous funding of both the Working Group on Ethics and Cell Engineering that stimulated my thinking about these matters and the Greenwall Fellowship program that gave me the opportunity for substantial work on this paper.
