How Stigma Distorts Justice: the Exile and Isolation of Leprosy Patients in Hawai`i
Leprosy has taken on many names throughout human history. But none of its nomenclature has adequately captured the essence of what it has historically meant to live with the disease like the Hawaiian term ma`i ho`oka`awale, or “the separating sickness.” The appropriateness of this term is twofold: on the one hand, it accurately reflects the physical isolation imposed on leprosy patients as a result of stigmatization and quarantine policies; on the other, it seems fitting to use the language of the culture and race that leprosy so disproportionately affected in nineteenth and twentieth century Hawai`i. This essay offers an ethical analysis of the treatment of leprosy patients in Hawai`i to identify mistakes made in the sphere of public health to better guide the management of infectious diseases today. It provides an historical overview of leprosy in order to contextualize its journey to the Hawaiian Islands, with a particular focus on the horrific century-long isolation of leprosy patients to the remote Kalaupapa settlement. It then presents two contrasting normative claims about the banishment and isolation practices by using two different theories of justice: utilitarianism and Rawls’ justice as fairness. In doing so, this essay illustrates the ways in which stigmatization and racism could likely affect the abhorrent treatment of leprosy patients by disproportionately appealing to the “greater good.” However, I contend that this dichotomization of justice brings us to a moral impasse in the context of public health. Rather, considering infectious diseases with a “patient as victim and vector” (PVV) approach may prove more beneficial, especially in tandem with a schema of justice that promotes self-respect as a primary good to combat the deleterious effects of stigma. This historical reflection may thus allow medical professionals and policy makers alike to draw upon valuable ethical lessons for contemporary initiatives in public health.
KeywordsJustice Stigma Public health Self-respect Hawai'i Global bioethics Leprosy
Because we are sick they take away our liberty. We have obeyed the law. We have done no wrong. And yet they would put us in prison. Molokai is a prison. That you know. Niuli, there, his sister was sent to Molokai seven years ago…This is not her will. It is not Niuli’s will. It is the will of the white men who rule the land. And who are these white men?
– excerpt from Koolau the Leper, by Jack London (1912)
Leprosy, a disease capable of singularly devastating effects, has taken on numerous nomenclatures throughout history. It has been mistaken for the Hebrew word tsara’ath, a term used to describe an assortment of dermatological maladies in the Old Testament, and more recently referred to as “Hansen’s Disease” after the Norwegian physician who discovered its microbial origins (Hulse 1976; Cole et al. 2001; Lendrum 1952). But none of these names adequately captures the essence of what it has historically meant to be a “leper”1 like the Hawaiian term ma`i ho`oka`awale, or “the separating sickness” (Bloombaum and Gugelyk 1979). The appropriateness of this term is twofold: on the one hand, it accurately reflects the physical isolation imposed on leprosy patients as a result of stigmatization and quarantine policies; on the other, it seems fitting to use the language of the culture and race that leprosy so disproportionately affected, as the above quote from Jack London illustrates.
This essay offers an ethical analysis of the treatment of leprosy patients in Hawai`i to identify mistakes made in the sphere of public health to better guide the management of infectious diseases today. I will first provide an historical overview of leprosy in order to contextualize its journey to and stigmatization in the Hawaiian Islands, with a particular focus on the horrific century-long isolation of leprosy patients to the remote Kalaupapa settlement on the island of Molokai. I will then present two contrasting normative claims about the banishment and isolation practices using two different theories of justice. In doing so, I identify ways in which stigmatization and racism could likely affect the abhorrent treatment of leprosy patients and influence its justification through appeals to a utilitarian theory of justice over a Rawlsian theory. However, I contend that this dichotomization of justice is a largely naïve one that brings us to a moral impasse in the context of infectious diseases. Rather, the essay concludes with a discussion of the benefits a “patient as victim and vector” (PVV) approach may provide in the context of leprosy in Hawai`i, especially in tandem with a schema of justice that promotes self-respect as a primary good to combat the deleterious effects of stigma. This historical reflection may thus allow medical professionals and policy makers alike to draw upon valuable ethical lessons for contemporary initiatives in public health.
Perhaps the oldest disease known to man, leprosy was first documented over 2000 years ago in ancient medical records (Daly 2007). Stigma has since followed its appearance throughout human history, as the biblical Book of Leviticus described leprosy patients as “unclean” and a source of somatic and religious impurity (Lendrum 1952; Hulmani and Kudur 2013). The disease was thus believed to be a sign of moral failure that qualified banishment from society. The necessity of segregation prescribed by the Old Testament thus contributed to the misconception that leprosy was highly communicable. European practice in the Middle Ages even described the disease as “living death and a sign of God’s condemnation,” while often literally requiring a funeral mass for the afflicted (but still living) persons before they were exiled to a leprosarium (Daly 2007).
Fears of mass contagion have since been proven scientifically unfounded, and Dr. Hansen’s 1873 discovery of Mycobacterium leprae has shown that a bacillus infection, rather than an unclean soul, is responsible for the disease (Waxler 1998). Yet these facts were still unknown when leprosy became a serious topic for public health discourse in the Kingdom of Hawai`i in the mid-nineteenth century. Although the true source of leprosy to the islands remains elusive, the Hawaiians believed Chinese cooks and indentured laborers carried it over from Asia and duly named it ma`i Pākē, or “Chinese sickness.” It was also referred to as ma`i ali`i (“royal sickness”) for its incidence within the royal family (Waxler 1998; Levin and Law 1989). Hawaiians in particular expressed little resistance to the more severe “lepromatous” form (compared to the mild “tuberculoid” manifestation) of the disease and thus were disproportionately afflicted, but Koreans, Filipinos, Japanese, and Caucasians were also affected to varying degrees (Worth 1996).
Although the symptoms classically associated with the M. leprae infection were manifest in Hawaiian patients, the historically accompanying stigma—at least initially—surprisingly did not arise in the Hawaiian community. The culture’s focus on `ohana, or family unit, resulted in care for diseased patients that was largely indiscriminate of the diagnosis (Amundson and Ruddle-Miyamoto 2010). In fact, one observation showed that “native Hawaiians possessed an absolute fearlessness and absence of any disgust for the disease in its worst form” (Gussow and Tracy 1970). But as a result of Western ideological colonialism, insidiously reaching its zenith in Hawai`i during the latter half of the nineteenth century, influential physicians on Hawai`i’s Board of Health pleaded for “some radical sanitary measure” to curb the spread of the sinful “disease of inferior people” (Tayman 2006; Bloombaum and Gugelyk 1979). King Kamehameha V thus approved the 1865 “An Act to Prevent the Spread of Leprosy,” which, quite literally, criminalized leprosy (Levin and Law 1989).
The Act, besides empowering the Hawai`i Board of Health to identify, detain, and confine anyone “deemed capable of spreading the disease,” also set aside land for a leprosy settlement at Kalaupapa on the island of Molokai (Daly 2007; Levin and Law 1989). Referred to as a “prison fortified by nature” due to its rugged coastline and sheer cliffs flanking its southern border, Kalaupapa ironically enabled and encouraged a sinful and lawless community in its early years as prisoners took to extreme measures to simply survive (Porteus 1954). Given scarcely more than a shovel, blanket, and livestock to begin their new lives in exile, the initial cohort of exiles faced an abominable 46% mortality rate over the first five years after Kalaupapa’s inauguration (Tayman 2006). Their death, of course, was largely irrelevant outside of the settlement; exiled patients were already proclaimed “civilly dead” by the Board of Health upon banishment, which granted divorce to spouses and the execution of wills as if the leprosy patients had already succumbed to the disease (Daly 2007).
While the history of Kalaupapa often lingers in the shadow of Hawai`i’s more idyllic caricature, the stories from the settlement are rich, limned with the noble efforts of people like Mother Marianne, the recently canonized Father Damien, and uninfected kokua (helpers) who followed banished loved ones to provide comfort and care (Moran 2015; Levin and Law 1989). But Kalaupapa is equally pockmarked by medical atrocities, including Dr. Arthur Mouritz’ experimentation on kokua to determine the mode of transmission for M. leprae, as well as Dr. Eduard Arning’s grafting of a “fist-sized lump of leprous flesh” from a young girl onto a convicted murderer—a Hawaiian man who was given the options of death by hanging or treatment as an “experimental animal” (Daly 2007; Tayman 2006). The rise in popularity of eugenics in the early twentieth century also nearly resulted in compulsory sterilization policies at Kalaupapa, a strategy that was ultimately supplanted by “voluntary” sterilization offered in exchange for parole privileges (Bloombaum and Gugelyk 1979; Daly 2007).
Former patients deemed “negative” for the disease after successful treatment also complained about social workers disclosing their medical history to neighbors and employers, effectively barring Kalaupapa alumni from obtaining work outside of the settlement and perpetuating their isolation beyond the technical purview of the Board of Health (Bloombaum and Gugelyk 1979). Although living conditions within Kalaupapa did slowly improve and the practice of isolation gradually waned until its termination in 1969, the stigma associated with leprosy largely persisted amongst Hawai`i’s citizens and deeply affected over 8000 patients who braved the boat ride to Molokai (Tayman 2006).
Bioethical misconduct was thus rampant in the treatment of leprosy patients and deeply ingrained in the historical roots of Kalaupapa, ranging from disuse of informed consent to misuse of confidential information. But the question remains whether or not these actions were justifiable in the name of public health. The next section of this essay addresses how a theory of justice could be (mis)used to morally vindicate (or incriminate) the isolation of leprosy patients as a legitimately strategy to combat infectious disease.
Two Theories of Justice
It is often stated that, in the development of modern bioethics, consideration of infectious disease “simply got left out” (Francis et al. 2005). This statement accurately reflects the tension often cited in the pursuit of public health, a dilemma caused by the polar normative values of individual liberty and health-as-public-good (Bayer 2007). Since the isolation of leprosy patients in Hawai`i ended a full decade before the first publication of Beauchamp and Childress’ now canonical four principles (1979), there are obvious (but not insurmountable) difficulties in ethically evaluating the practices of another era characterized by inferior scientific capabilities and unfamiliar professional norms (Gerwin 2012; Strous 2007). This essay seeks neither to make a retrospective moral judgment as to whether Hawai`i’s Board of Health acted unethically given the contemporaneous moral values of their respective epoch, nor to open the Pandora’s box of “historical ethical relativism” that dismisses contemporary judgments as invalid due to confounding temporal circumstances (Buchanan 1996). Rather, this essay investigates how ethical frameworks of today might evaluate the policies regarding Kalaupapa, given their understanding of leprosy’s pathophysiology, to shed light on what sort of actions we might find morally reprehensible as novel outbreaks arise.
The principle of justice is as old as Socrates himself and has traditionally been framed by issues that are distributive, systemic, or institutional in nature (Republic 1992; Millum and Emanuel 2015). Justice can thus act as a versatile theory to sympathize with Hawai`i’s Board of Health’s actions—especially within the context of public health—yet condemn them all the same. The theoretical plurality that exists within the concept of justice allows this dualistic interpretation, and the following sections explain the origins of these two opposing stances: one rooted in teleological utilitarianism, the other in a deontological Rawlsian approach.
Utilitarian Defense of Leprosy Isolation
Utilitarianism is a branch of normative ethics popularized by philosophers Jeremy Bentham and John Stuart Mill and is a moral theory founded upon “the Greatest Happiness Principle” which claims that “actions are right in proportion as they tend to promote happiness, wrong as they tend to produce the reverse of happiness” (Mill and Sher 2002). It is a teleological theory because it defines “the good independently of the right and defines the right as that which maximizes the good” (Buchanan 1981). The “good” can be anything from hedonistic notions of pleasure to a general state of well-being. Utilitarians have two major forms, however: the first being an Act Utilitarian who determines what is morally required based how particular actions in a given circumstance will produce the greatest utility; the second being a Rule Utilitarian, who internalizes a set of rules that, when followed by “the overwhelming majority,” can reasonably be expected to increase the overall utility of society (Steinbock 2009). Thus, even though a particular act may not adhere to “the Greatest Happiness Principle,” the overall utility derived from adherence to a rule can be maximized through the things that the rule enables. For example, although truth-telling when divulging bad news might produce displeasure, the general rule of veracity allows society to benefit from things like trust in promises or contractual obligations.
This second form of utilitarianism can thus account for a utilitarian theory of justice because it considers how an institution and its laws affect the overall utility the institution enables. Rather than concerning itself with the direct consequences of singular, particular actions, the institution can justify a set of actions if they fall under a particular rule that maximizes utility (Buchanan 1981).
Within this theory of justice, we can find a defense for exiling leprosy patients through the age-old platitude yielding to “the greater good.” Given the paucity of scientific understanding at the time, containment and isolation actually constitutes a reasonable approach to prevent the spread of an untreatable disease thought to be highly contagious. It also had precedent in the islands: the 1865 “Act to Prevent the Spread of Leprosy” was actually based on a template used for a quarantine law responding to a smallpox outbreak—a disease that had previously winnowed the Hawaiian population to a fraction of its former size (Daly 2007). The Board of Health, therefore, could be justified in banishing leprosy patients since these supposedly infectious individuals posed a threat to the health of the population at large. John Stuart Mill himself could justify such an infringement on personal liberties based on his own notion of the “harm principle,” under which one is only free to act insofar as one’s actions do not bring harm to others (Mill et al. 1991). A utilitarian schema of justice is also particularly apt for public health purposes, as this field of medicine has often been described as having “an intrinsic outcome-orientation” (Faden and Shebaya 2010).
The experiments of doctors Arning and Mouritz could also be seen as justifiable under a utilitarian schema of justice. They sacrificed the well-being of the few in an attempt to discover generalizable scientific knowledge that could be used to protect the uninfected population, or perhaps cure the leprosy patients themselves. Is that not how modern day research is (essentially) justified today? The clinician-researcher understands that the goal of a placebo arm is not to benefit the patient-subject, but rather to assess the scientific validity of a particular treatment for generalizable knowledge (Brody and Miller 2003). We allow, as a general rule, the practice of non-therapeutic research to maximize the utility of evidence-based medicine. This is obviously a reductionist account of research ethics and one that ignores the exonerating practice of informed consent, but the plausibility of similar foundational justifications for both the leprosy experiments and modern clinical trials is not so far-fetched.
Although one might countenance public health concerns as morally excusable (if not particularly justifiable) for the management of leprosy patients in Hawai`i at the time, it is not entirely clear that these served as the sole motivation for proponents of isolation. In fact, there is evidence that Hawai`i’s Board of Health was perhaps disingenuous with its health policies, as a promotional pamphlet passed around by the Board in 1850 lacked any acknowledgment of leprosy’s endemicity in the local population (Daly 2007). Rather, it is more likely that economics played a significant role, and utilitarian policy makers sought to maximize utility-as-capital as well as utility-as-health. Hawai`i businessmen worried that stories of leprosy would ruin the tourism or export industry, and any news reporting regarding the disease “was purposely omitted…for fear of injuring…commercial development” (Gussow and Tracy 1970).
We can now see the way in which a Rule Utilitarian’s theory of justice could justify the isolation of leprosy patients in Kalaupapa. Even at the turn of the century, during the highest rate of occupancy of the settlement, just over 1100 patients inhabited the peninsula (Binford 1936). In contrast, close to 150,000 residents lived in Hawai`i at the time (Menton and Tamura 1991). So, despite the displeasure produced by the particular act of banishment, the overall effect of the policy meant that over 99% of the population would supposedly benefit either medically or economically, directly or indirectly.
A Rawlsian Critique of Kalaupapa
Deontological theories of morality often accompany a lexicon including “duty” or “obligation” and usually stand in contradiction to purely consequentialist normative theories like utilitarianism. Rather than being concerned with the outcome of a particular action, deontology assesses whether the nature of the action itself is “right or wrong, obligatory, or optional” (Steinbock 2009). Immanuel Kant is perhaps the most famous of deontological moral philosophers, and contemporary bioethics often take a deontological approach that defines a set of principles (which may include the principle of utility) to help govern ethical actions (Alexander and Moore 2007). John Rawls’ claim of “justice as fairness” in his landmark A Theory of Justice reflects a deontological approach, and he provides a short list of principles that a just society would observe (Buchanan 1981).
“Each person is to have an equal right to the most extensive scheme of equal basic liberties compatible with a similar scheme of liberties for others”
“Social and economic inequalities are to be arranged so that they are… attached to offices and positions open to all under conditions of fair equality of opportunity”
These principles appear in lexical priority, under which the basic liberties must be secured and satisfied before considering the following principles, and “infringements of the basic equal liberties… cannot be justified, or compensated for, by greater social and economic advantages” (Rawls 1999). Some of these basic liberties include suffrage; freedom of speech, assembly, or thought; freedom from oppression or physical assault; a right to personal property; and freedom from arbitrary arrest or seizure. Once these basic liberties are ensured, any disparity in social primary goods (like income or power) or natural primary goods (like health or intelligence) must work to everyone’s advantage. Thus, a strict egalitarian requisite exists only for the first principle, whereas the following two allow for inequality insofar as this inequality results from a just process.
Now that we have a fuller understanding of Rawls’ theory of justice, we can easily identify the ways in which Hawai`i’s Board of Health’s actions fell short of what is expected of a just arrangement. If we disagree with the conflation of the term “leper” with “convict” that the 1865 Act committed (as it is not clear that criminals deserve the same scope of protection under Rawls’ theory, and is even less clear that contracting leprosy amounts to a criminal act), leprosy patients were clearly stripped of their basic liberties. Proclaiming them as “civilly dead” disenfranchised patients, and premature execution of their wills surely constituted a perverse form of arbitrary seizure of property. The experiments performed by Arning and Mouritz, as well as vivid descriptions of non-consenting patients’ frequent biopsies, certainly violated their freedom from physical assault and dismemberment (Tayman 2006).
Inhered in Rawls’ theory of justice is a strong case for the defense of human rights, a “core list” that is largely synonymous with the basic liberties previously mentioned (Wenar 2017). Matthew Daly’s legal analysis of the treatment of leprosy patients in Hawai`i, in context of the Rome Statute of the International Criminal Court, has similarly found fault in the Board of Health’s policies by evidence of “forcible transfer, imprisonment in violation of international law, torture, forced sterilization, and persecution” (Daly 2007). In other words, leprosy patients sent to Kalaupapa endured serious and serial crimes against humanity that would not be tolerated today.
Using Rawls’ theory of justice, we have evinced the injustices that leprosy patients in Hawai`i faced when forcibly separated and isolated at Kalaupapa. This reasoning is in direct contrast with the utilitarian approach described earlier and comes to very divergent conclusions on the ethical culpability of those involved with their banishment. As mentioned previously, the two accounts of justice presented do not purport to provide an account of the moral deliberation Hawai`i’s Board of Health actually used (although the recency of Rawls’ theory and the legacy of public health suggest this utilitarian-based normative claim could also be a descriptive one). However, given the stigma traditionally associated with leprosy, I shall now focus on how the inimical concepts of stigmatization and self-respect might influence asymmetrical adoption of these theories of justice regarding Kalaupapa transfers. The next section discusses the role that stigma could likely play in promoting a utilitarian conception of justice to serve proponents of isolation policies, as well as the antithetical nature of stigmatization in a Rawlsian theory of justice that promotes self-respect.
The Roles of Stigma and Self-Respect in the Dichotomy of Justice
The Oxford Dictionary of English defines stigma as “a mark of disgrace associated with a particular circumstance, quality, or person” (Stevenson 2010). It involves the internalization of some external judgment in such a way that the stigmatized themselves come to view a certain personal trait as undesirable or disgusting. It is a subtle distinction from discrimination yet works to devalue and discredit individuals nonetheless in a way that is self-perpetuating (Courtwright 2009).
How might the existence of a stigma cause one to seek out utilitarian justification of forcibly banishing leprosy patients? On the one hand, the Kalaupapa settlement represents a physical manifestation of the theoretical concept of stigma, in which one becomes displaced within one’s own society. In effect, the stigmatization of leprosy patients cast them as outsiders and could serve to normalize their exile—because outcasts qua outcasts belong outside. Thus, the utilitarian argument in favor of protecting public health and economic stability of society would have little counterbalance of any normative weight, and the benefits of an isolation policy could therefore be overrepresented in a utilitarian calculus. Although Mill mandates in his Utilitarianism that all individuals’ interests be accounted for equally, “laws and social arrangements should place the happiness…of every individual, as nearly as possible in harmony with the interest of the whole” (Mill and Sher 2002). If the “whole” in question predominantly finds leprosy repugnant, fearsome, and possibly contagious, there is no moral quandary for the utilitarian in overriding the interests of the individual patient. Similar experiences have been noted in studies on stigma surrounding HIV/AIDS patients, as communities take the “utilitarian strategy” of withdrawing support for those deemed no longer part of or contributive to the social group (Stein 2003).
Stigmatization of disease, race, and culture alike also may work to synergistically encourage a utilitarian theory of justice. As noted previously, stigma has long been attached to leprosy due to religious, medical, and esthetic assumptions and influences (Lendrum 1952; Hulmani and Kudur 2013). The exact source of leprosy stigmatization in the nineteenth century is unclear, but it nonetheless accompanied both the disease and other Western imperialistic ideals to Hawai`i. Some of these ideals included bigoted racial beliefs and the doctrine of social Darwinism, both of which contributed to the perpetuation of the leprosy stigma and the emergence of a novel “stigma of non-disgust” (Amundson and Ruddle-Miyamoto 2010). This new stigma resulted from the Native Hawaiians’ lack of reaction to the presence of leprosy, which was regarded by Westerners as “an additional sign of (racial) degeneracy, not a sign of cultural compassion and charity” (Amundson and Ruddle-Miyamoto 2010). Rather, the lack of aversion to leprosy patients was believed to be a racial trait that simply contributed to prevalence of the disease in Hawaiians. There is a twisted recursion immanent in this line of reasoning: a race is stigmatized due to its high incidence of leprosy, and leprosy is further stigmatized because of its prevalence in that stigmatized race (Waxler 1998).
This holds several implications for evaluating the events at Kalaupapa. For one, it subverts even further the normative weight of the banished patients’ experience, as they become not only stigmatized outsiders but inferior beings in general. What’s more, these outsider-inferiors constituted a political minority given the waning population and social influence of Hawaiians at the time. So the “greater good” once again could seem much greater to those informing policy decisions.
A modern utilitarian might not find this to be an entirely accurate account of their moral framework, as considerations of race or disease may not be logical reasons for disregarding the “principle of equal consideration of interests” (Singer 2011). But in light of the imperialistic ideals and stigmatizations of the time in Hawai`i, a utilitarian theory becomes increasingly appealing to those justifying exile and isolation because it (at least superficially) allows both subversion of individual rights and marginalization of stigmatized groups under the “greatest happiness principle”—a definitively characteristic principle of a utilitarian schema. We can also now see that the prejudiced notions of disease, race, and culture necessarily preclude an adoption of a Rawlsian theory of justice and would inevitably steer proponents of Kalaupapa away from such a theory. Embedded within Rawls’ framework are Kantian notions requiring equal respect for all persons (Wenar 2017). The treatment of Hawaiians and leprosy patients cannot possibly be regarded as respectful by any stretch of the imagination.
One final note regarding stigma in the context of justice concerns the notion of self-respect. Rawls himself concedes that self-respect is a primary good that can be instrumental in attaining some conception of the good life (Rawls 1999). Yet it is not as obvious how self-respect helps one attain any desired ends, nor how to properly distribute such an abstract concept in a procedurally just manner. Courtwright offers that “to have self-respect is to have the ability to make an accurate assessment about the value of various aspects of oneself” (Courtwright 2009). It seems, then, that self-respect is conceptually antithetical to the psychological byproducts of stigma (i.e., the internalization of external judgment). Self-respect allows one to make personal assessments and reflective changes while remaining impervious to the coercive effects of stigmatization. Courtwright also refers directly back to Rawls, who writes, “The basis for self-respect in a just society is…the publicly affirmed distribution of fundamental rights and liberties” which makes us “feel that our endeavors are respected by [others]” (Rawls 1999). Consequently, a just social arrangement regarding health care should promote self-respect within historically stigmatized groups, either by promoting equal treatment or funding organizations dedicated to overcoming certain stigmas, as a more tangible means of justly distributing self-respect (Courtwright 2009). A Rawlsian proponent of justice could therefore never support the actions against leprosy patients in Hawai`i since stigma is wholly incompatible with Rawls’ vision of a just society.
A Case for “Patient as Victim and Vector”
Although I contend that the forcible transfer of leprosy patients to Kalaupapa and their subsequent treatment were detestable and ethically reprehensible under Rawlsian notions of justice, there seems to be a lingering intrinsic quality of infectious disease management that requires a nuanced utilitarian approach. As mentioned previously, the development of modern bioethics largely ignored the field of infectious disease and thus placed a greater emphasis on individual patients’ rights that seems too far removed from the population-affecting realities of pandemics (Francis et al. 2005). Even Beauchamp and Childress’ principle of justice largely concerns limited resources in health care (Beauchamp and Childress 2013)—not limited scientific knowledge in an epidemic.
One publication offers a possible remedy to this gap in the bioethical discourse: The Patient as Victim and Vector: Ethics and Infectious Disease by Battin and colleagues (Battin 2009). They offer a normative view within their PVV approach, such that “Ethical problems in infectious disease should be analyzed, and clinical practices, research agendas, and public policies developed, that always take into account the possibility that a person with communicable infectious disease is both victim and vector” (Battin 2009). While traditional bioethics has placed greater emphasis on the infected patient as victim and public health on the patient as vector, the PVV approach merges the roles and addresses the tension they bring to the fore. They propose an integration of three perspectives to fully capture the relevant issues infectious diseases broach.
The first perspective considers “The Experiences of Individual People with Infectious Disease in Real Life,” which empathically takes into account the fear, beliefs, desires, and concerns one possesses as a virtue of being a human in the world of infectious disease. The second perspective takes on “The Population-wide View” that considers how an infectious disease is distributed in or affecting a larger group of individuals. It considers persons as “data points” that lead to an overall picture of the disease in a way reminiscent of utilitarianism, but the PVV approach ensures the ethical tension of multiple perspectives pulls the focus back onto the individual patient as well. The third perspective concerns “Theoretical Uncertainty About Infectious Disease,” which takes on a much more complex discussion of justice based on some of Rawls’ theories (Battin 2009).
In this last perspective, the PVV approach acknowledges that many aspects about an infectious disease is not or cannot be known, and therefore, individuals cannot fully comprehend how, if, or when such a disease will affect them. Battin and colleagues draw a direct parallel to Rawls’ “veil of ignorance” thought experiment in which any rational being, when stripped of any knowledge of the realities of their own social, economic, or political situation, would presumably choose a set of principles to govern society that maximizes those worst off impartially (Rawls 1999; Battin 2009). Since an individual quite literally lives in a veil of ignorance concerning the infectious diseases of her environment, she would presumably choose a policy that anyone would find adequately just and prudent—be it the infected patient, epidemiologist, or member of a disproportionately targeted group (Battin 2009). Using this framework, policy makers concerned about a disease could indeed justify practices like quarantine or isolation to a degree, all while maintaining a patient-centered view that ensures quality health care and basic rights to things like confidentiality and legal standing.
Although Hawai`i’s Board of Health utterly failed to achieve the PVV balancing act in their policies regarding Kalaupapa, the World Health Organization (WHO) has moved significantly closer towards this public health paradigm. In recent guidelines on the ethical use of surveillance in public health, WHO has affirmed the stance that surveillance is indeed justified on the grounds of the “common good” (WHO 2017). However, this utilitarian defense must also work commensurately with ethical considerations of “equity,” “respect for persons,” and “good governance” to ensure fair treatment, sufficient liberties, and significant transparency in surveillance policies (WHO 2017). A similar report on ethical issues in outbreaks of infectious disease also alludes to these competing principles when restricting a person’s freedom of movement via quarantine, isolation, or travel ban (WHO 2016). Although such practices are ultimately justified by appeals to protecting the larger population, WHO acknowledges that “under some epidemiological circumstances, they may contribute little or nothing to outbreak control efforts, and may even be counterproductive if they engender […] resistance to other control measures” (WHO 2016). Restricting patients’ movements must therefore have substantial supporting evidence for its effectiveness in preventing or reducing transmission, conform to the “least restrictive means” possible, and ensure “humane conditions” that accord basic necessities like food, water, shelter, clothing, and medical care to patients (WHO 2016).
In the context of leprosy, tensions between individual liberty and the common good have turned out to be not so fraught after all. Genomic studies have shown that 95% of humans are naturally immune to the bacillus infections (Atkin 2017), confirming reports from as far back as the 1920s while providing the reassuring imprimatur of modern technology (Meyers 1998). And although the exact mode of transmission of M. leprae remains unknown (Reibel et al. 2015), the current standard of care using multidrug therapy (MTD) has essentially cured the disease, “rendering isolation therapy obsolete” (Atkin 2017; WHO 2018). Given our contemporary understanding of the disease, restricting one’s movement would thus neither be medically required nor ethically justified. These facts and capabilities admittedly eluded Hawai`i’s Board of Health for much of Kalaupapa’s tenure, which, from a public health perspective, could serve to justify precautionary surveillance or isolation of leprosy patients to prevent the (albeit slow) spread of the disease. However, the utter disregard for these patients as victims—and their complete labeling as vectors—violated nearly all of WHO’s ethical principles by engendering disparities, disrespect, and disclosure of confidential information to the public (Bloombaum and Gugelyk 1979). The inhumane conditions of the settlement and its grossly restrictive means likely did more damage than good for other control measures as well by creating feelings of resentment and distrust, as best illustrated by the remarks of Koolau at the beginning of this essay (London 1912). Stigmatization of leprosy patients, it seems, did not follow from the isolation practices at Kalaupapa; rather, stigma likely only affirmed and exacerbated these unwarranted policies.
The law mandating isolation of leprosy patients in Kalaupapa endured for a staggering 103 years, yet the injustices the law engendered will remain a pockmark on the history of Hawai`i for generations to come. Although it is easy to criticize the practice from today’s standards of ethical conduct emphasizing human rights, different accounts of justice can dramatically differ in their assessment of Hawai`i’s Board of Health and isolation proponents. In this essay, I have proposed two distinct theories of justice that help to explain each of these contradictory views, and ultimately assert that health officials in nineteenth and early twentieth century Hawai`i, under the influence of bigotry and stigma, may disproportionately prefer a utilitarian conception of justice as compatible with their prejudices. However, by acknowledging the significance of self-respect in a Rawlsian theory of justice and its role in curbing the effects of stigmatization—as well as tackling issues like leprosy from a PVV approach—we can create a more comprehensive normative view for infectious diseases that reflects upon and learns from the actions of Hawai`i’s Board of Health.
In this proposed integrated framework, we would not only find that leprosy patients transferred to Kalaupapa were disproportionately viewed as vectors rather than victims (Battin 2009), but also consider ways in which a just distribution of self-respect could be realized—whether by reducing the stigma surrounding leprosy through public education, or promoting programs designed to promote Hawaiian culture in the face of imperialism (which, incidentally, would also promote feelings of non-disgust towards leprosy patients). The antiquated views of Hawai`i’s Board of Health have luckily been revised in WHO’s treatment of leprosy, and their policies on surveillance and restriction of movement indeed explicitly acknowledge the competing ethical principles that often arise in the public health sector. For global health initiatives, the importance of each step away from divisive stigmatization cannot be overstated. With this goal in mind, perhaps we can learn from the ma`i ho`oka`awale—the sickness that separates—to find ways that reunite us in our humanity.
This term is now largely viewed as an oppressive, stigmatized slur that I will only use within direct quotations for this essay.
- Alexander, Larry, and Michael Moore. 2007. Deontological ethics. In The stanford encyclopedia of philosophy, ed. Edward N. Zalta. Stanford, CA: Metaphysics Research Lab, Center for the Study of Language and Information, Stanford University.Google Scholar
- Amundson, Ron, and Akira Ruddle-Miyamoto. 2010. A wholesome horror: the stigmas of leprosy in 19th century Hawaii. Disability Studies Quarterly 30 (3/4). https://doi.org/10.18061/dsq.v30i3/4.1270.
- Atkin, Natalie J. 2017. From isolation to prosperity: rediscovering the Carville leprosarium. Clinics in Dermatology. https://doi.org/10.1016/j.clindermatol.2017.11.004.
- Beauchamp, Tom L., and James F. Childress. 2013. Principles of biomedical ethics, 7th edition. New York: Oxford University Press.Google Scholar
- Binford, Chapman H. 1936. The history and study of leprosy in Hawaii. Public Health Reports (1896–1970) 51 (15): 415–423.Google Scholar
- Bloombaum, Milton, and Ted Gugelyk. 1979. Ma’i Ho’oka’awale, the separating sickness: excerpts from interviews at Kalaupapa settlement, Molokai, Hawaii. Honolulu: Social Science Research Institute, University of Hawaii.Google Scholar
- Buchanan, Allen. 1981. Justice: a philosophical review. In Justice and health care, ed. E. E. Shelp, 3–21. Dordrecht: Springer.Google Scholar
- Cole, S. T., K. Eiglmeier, J. Parkhill, K. D. James, N. R. Thomson, P. R. Wheeler, N. Honoré, T. Garnier, C. Churcher, D. Harris, K. Mungall, D. Basham, D. Brown, T. Chillingworth, R. Connor, R. M. Davies, K. Devlin, S. Duthoy, T. Feltwell, A. Fraser, N. Hamlin, S. Holroyd, T. Hornsby, K. Jagels, C. Lacroix, J. Maclean, S. Moule, L. Murphy, K. Oliver, M. A. Quail, M. A. Rajandream, K. M. Rutherford, S. Rutter, K. Seeger, S. Simon, M. Simmonds, J. Skelton, R. Squares, S. Squares, K. Stevens, K. Taylor, S. Whitehead, J. R. Woodward, and B. G. Barrell. 2001. Massive gene decay in the leprosy bacillus. Nature 409 (6823): 1007. https://doi.org/10.1038/35059006.
- Daly, Matthew. 2007. Medical necessity as a necessity for crimes against humanity: an examination of the Molokai transfers. Arizona Journal of International and Comparative Law 24 (3): 645–699.Google Scholar
- Faden, Ruth, and Sirine Shebaya. 2010. Public health ethics. In The stanford encyclopedia of philosophy, ed. Edward N. Zalta. Stanford, CA: Metaphysics Research Lab, Center for the Study of Language and Information, Stanford University.Google Scholar
- Gussow, Z., and G. S. Tracy. 1970. Stigma and the leprosy phenomenon: the social history of a disease in the nineteenth and twentieth centuries. Bulletin of the History of Medicine 44 (5): 425–449.Google Scholar
- Levin, Wayne, and Anwei Skinsnes Law. 1989. In Kalaupapa: a portrait. Honolulu: Bishop Museum Press, for the Arizona Memorial Museum Association.Google Scholar
- London, Jack. 1912. The house of pride: and other tales of Hawaii. New York: The Macmillan Company.Google Scholar
- Menton, Linda K., and Eileen Tamura. 1991. A history of Hawai. Honolulu: University of Hawaii.Google Scholar
- Meyers, W. M. 1998. Leprosy research and patient care over the past century. International journal of leprosy and other mycobacterial diseases: official organ of the International Leprosy Association 66 (1): 43–48.Google Scholar
- Mill, John Stuart, and George Sher (ed.). 2002. Utilitarianism: and the 1868 Speech on Capital Punishment. Cambridge, MA: Hackett Publishing Company.Google Scholar
- Mill, John Stuart, John Gray, and G. W. Smith. 1991. J.S. Mill, On liberty in focus. New York, London: Routledge.Google Scholar
- Millum, Joseph, and Ezekiel. J. Emanuel. 2015. Introduction. In Global Justice and Bioethics. Oxford Scholarship Online. https://doi.org/10.1093/acprof:osobl/9780195379907.003.0001.
- Moran, Michelle T. 2015. Ma‘i Lepera: Disease and Displacement in Nineteenth-Century Hawai‘i by Kerri A. Inglis (review). Hawaiian Journal of History 49: 214-215. https://doi.org/10.1353/hjh.2015.0003.
- Republic. 1992. Plato, G. M. A. Grube (transl.), and C. D. C. Reeve (ed.). Indianapolis: Hackett Publishing Company.Google Scholar
- Porteus, Stanley D. 1954. Calabashes and kings: an introduction to Hawaii. London: George G. Harrap & Co.Google Scholar
- Rawls, John. 1999. A theory of justice. Rev. ed. Oxford: Oxford University Press.Google Scholar
- Reibel, F., E. Cambau, and Alexandra Aubry. 2015. Update on the epidemiology, diagnosis, and treatment of leprosy. Médecine et Maladies Infectieuses 45 (9): 383–393. https://doi.org/10.1016/j.medmal.2015.09.002.
- Steinbock, Bonnie. 2009. The Oxford handbook of bioethics. Oxford: Oxford University Press.Google Scholar
- Stevenson, Angus. 2010. Oxford dictionary of English. Oxford: Oxford University Press.Google Scholar
- Strous, Rael D. 2007. Psychiatry during the Nazi era: ethical lessons for the modern professional. Annals of General Psychiatry 6 (1): 8. https://doi.org/10.1186/1744-859X-6-8.
- Tayman, John. 2006. The colony: the harrowing true story of the exiles of Molokai. New York: Scribner.Google Scholar
- Waxler, Nancy E. 1998. Learning to be a leper: a case study in the social construction of illness. In Understanding and Applying Medical Anthropology, ed. Peter J. Brown, 147–157. Mountain View, CA: Mayfield Publishing CompanyGoogle Scholar
- Wenar, Leif. 2017. John Rawls. In The stanford encyclopedia of philosophy, ed. Edward N. Zalta. Stanford, CA: Metaphysics Research Lab, Center for the Study of Language and Information, Stanford University.Google Scholar
- WHO. 2016. Guidance for managing ethical issues in infectious disease outbreaks. Geneva: World Health Organization. http://www.who.int/blueprint/what/research-development/guidance_for_managing_ethical_issues.pdf.
- WHO. 2017. WHO guidelines on ethical issues in public health surveillance. Geneva: World Health Organization. http://apps.who.int/iris/bitstream/10665/255721/1/9789241512657-eng.pdf.
- WHO. 2018. Leprosy: fact sheet. Last Modified January 2018. http://www.who.int/mediacentre/factsheets/fs101/en/.
- Worth, Robert. 1996. Leprosy in Hawaii; the end of an epidemic (editorial). International Journal of Leprosy and Other Mycobacterial Diseases 64 (4): 441.Google Scholar