Structural Stigma, Legal Epidemiology, and COVID-19:  The Ethical Imperative to Act Upstream 

Daniel S. Goldberg

[This is an advance copy of an article that will appear in print in September 2020 as part of the KIEJ’s special double issue on Ethics, Pandemics, and COVID-19.]

ABSTRACT. The primary claim of this paper is that COVID-19 stigma must be understood as a structural phenomenon. Doing so will inform the interventions we select and prioritize for the amelioration of such stigma, which is an ethical priority. Thinking about stigma as a macrosocial determinant of health driven by structural factors suggests that downstream remedies are unlikely to be effective in significantly reducing stigma. This paper develops and defends this claim, setting up a recommendation to use a “bundle” of legal and policy levers at meso- and macro- levels to reduce the adverse and inequitable impact of COVID-19 stigma. In Section II, this commentary offers a basic account of the concept of stigma in general, the justification for conceptualizing it as a structural phenomenon, and some of the basic advantages of doing so. Section III moves on to frame infectious and communicable disease stigma in Western history not only as a way of demonstrating its structural features, but also to highlight the use of laws and policies as levers for public health change. Section IV urges explicit adoption of insights and methods from legal epidemiology and offers examples of specific legal and policy recommendations for addressing these stigmas. Section V concludes.

I. INTRODUCTION

The primary claim of this paper is that COVID-19 stigma must be understood as a structural phenomenon. Doing so will inform the interventions we select and prioritize for the amelioration of such stigma. Thinking about stigma as a macrosocial determinant of health driven by structural factors suggests that downstream remedies are unlikely to be effective in significantly reducing stigma. This paper develops and defends this claim, setting up a recommendation to use a “bundle” of legal and policy levers at meso- and macro- levels to reduce the adverse and inequitable impact of COVID-19 stigma.   

Historians of public health have long pointed out that outbreaks of communicable disease track social fault lines (Rosenberg 1992; 2009; Tomes 1999; Leavitt 1997; Kraut 1994). Epidemics illuminate stratifications, particularly among axes of power and social capital. Unsurprisingly, these demarcations often seem to intensify preexisting stigmas against marginalized and disadvantaged communities. Why outbreaks of communicable disease such as the COVID-19 pandemic seem to intensify preexisting stigmas so reliably is an important question this paper will explore. Nevertheless, there is little dispute that such stigmas are pernicious and virtually any ethic worth the name will provide a basis for the remediation of a pandemic- or epidemic-related stigma.

Yet there is something of a puzzle in this. Stigma is unlike most ethical quandaries in applied ethics, for it is generally not a social phenomenon on which reasonable people of good conscience differ. It is rare for a person to explicitly “stand up for stigma.” And yet all evidence suggests that it is a painfully common social experience, especially in encounters with health professionals. How can we explain this? Moreover, while the pressing question is obviously ‘how can we remediate stigma,’ an insufficient or shoddy conceptual grasp of stigma will lead to inadequate and ineffective interventions (Goldberg 2017).

The stigma that has followed the COVID-19 pandemic has thus far proven no exception to the history of epidemic-related stigma. Racial animus has tracked COVID-19 in virtually every society that has experienced outbreaks. Some of this animus has appeared as explicit, person-centered invidious racism. However, structural or institutionalized racism is also readily apparent in the devastating inequalities in COVID-19 prevalence, incidence, and severity. Perhaps unsurprisingly in a society “stamped from the beginning” with deeply entrenched racism (Kendi 2016), these inequalities have arguably been most apparent in the US.

In Section II, this commentary offers a basic account of the concept of stigma in general, the justification for conceptualizing it as a structural phenomenon, and some of the basic advantages of doing so. Section III moves on to frame infectious disease stigma in Western history not only as a way of demonstrating its structural features, but also to highlight the use of laws and policies as levers for public health change. Section IV offers examples of specific legal and policy recommendations for addressing these stigmas. Section V concludes.

II. STIGMA AS A STRUCTURAL PHENOMENON[1]

Most people experience health and disease stigma in an intersubjective context. Common sources of such stigma include public health and healthcare encounters, both in and out of formal clinical contexts. (The majority of healthcare work in the US occurs in informal and family caregiving settings, and family caregivers are unfortunately also active sources of health stigma.) Because the experience of stigma typically occurs in “local moral worlds,” this gives rise to the idea that stigma is fundamentally a product of these micro-level encounters. This is an illusion, albeit an understandable one. Stigma is a function of macrosocial, upstream factors. Both the concept and the empirical evidence of stigma support this claim.

For convenience, Link and Phelan’s (2014) five-component conceptual model of stigma can be distilled into two main aspects (without doing too much violence to the model): Difference + Deviance. Under the Difference phase, an ingroup marks an outgroup as different on the basis of a shared demographic characteristic. This branding is necessary but not sufficient to complete the stigma process. Instead, the ingroup must move on to judge the outgroup as deviant or inferior on the basis of that identifiable demographic characteristic (the Deviance phase).

While this account oversimplifies the process of stigma, it nevertheless generates several important points. First, while in theory it is possible to “arrest the stigma train” by preventing ascriptions of Deviance, the history of disease stigma in the West makes clear that, especially in cases of infectious disease, marking of Difference is inevitably followed by ascriptions of Deviance. That is, when we mark out a group as Different on the basis of a shared demographic characteristic, it is typically only a matter of time before we begin to ascribe Deviance to the outgroup on the basis of that characteristic. Hence, for example, the proposals to extend so-called immunity certificates, passports, or licenses to people who have COVID-19 antibodies on serological testing should trigger heightened normative scrutiny (Greely 2020; Kofler and Baylis 2020; Persad and Emanuel 2020), as by definition they mark out a group of people as different and overtly diminish their social status as a result. It does not follow that such proposals are ethically improper from the outset, but rather that given the immense harms that flow from linking social benefits and status to disease state, we should proceed with extreme caution in intentionally instantiating such processes in law and social policy.

Second, stigma is a function of social power (Phelan et al. 2014). The conceptual model demonstrates this: for an ingroup to make an outgroup as Different, the ingroup must be “in,” while the outgroup must be “out.” Social life is complicated, and most people belong to both ingroups and outgroups (and there are outgroups within ingroups and vice versa). But what happens when a person has the misfortune of belonging to many more outgroups than ingroups? On the basis of the model alone, we would predict that such a person is both much more likely to experience stigma, and to have the adverse consequences of that stigma—what Link and Phelan refer to as “stigma power” (2014)—be more severe.

There are two metaphors that can further illuminate what it means to take stigma as a structural phenomenon. The first is the idea of a script. Scripts are essentially habituated or routinized behaviors that are commonly deployed in various social contexts (Buchbinder et al. 2016; Gioia and Poole 1984). For example, in the US, the end of a meal at a restaurant commonly triggers the script of ‘asking for the check.’ Scripts are neither fate nor destiny. They are nevertheless dominant schemata that strongly influence behavior in certain contexts and in response to certain cues.

As noted above, stigma often does not generate significant moral disagreement. How many health workers wake up in the morning and decide that their day will be complete once they have effectively stigmatized six to eight people? And yet stigma is distressingly common in health- and disease- related contexts. We cannot make sense of this commonality of stigma absent—and sometimes even despite—any intentions to stigmatize people unless we expressly conceive of it as structural. Because stigma is shaped by social power and unequal access to it, social structures and institutions sustain and fuel the scripts through which stigmatizing behavior is enacted. Such structures can be physical, as in the case of the built environment—e.g., clinical spaces with chairs, tables, or gurneys that cannot accommodate fat people. They can also script interactions beyond the built environment, such as clinical intake forms that feature two boxes for gender identity. In the latter case, we could assume arguendo that the empowered parties who create and use the form do not explicitly hate gender nonbinary, gender-fluid, or genderqueer people. Rather, their behavior is scripted by upstream social structures that render such communities invisible; but like most structural phenomena, the adverse impact on marginalized and oppressed social groups persists in the absence of invidious intent.

The second metaphor that may be useful here is the idea of the background and set in a play, drama, or musical. Stagecraft professionals know that the background has an enormous effect on the construction of meaning in any theatrical performance. How the audience interprets dialogue and character, the mood, the tone, etc., are heavily influenced by the background and the set. However, the audience becomes so engrossed in the spectacle of the performance, often enough it ceases to consciously perceive the background (unless the audience expressly trains their perception on it). The rub, of course, is that the background and set continue to exert significant influence on the audience’s experience even when not explicitly perceived.

Disease stigma is often hegemonic (Burris, Kawachi, and Sarat 2002). It is frequently part of the social backdrop, invisible and perceived as natural and sensible, especially when inscribed and reified in important social institutions. In a 1993 paper, Australian healthcare workers reported that they thought people with type 2 diabetes experienced relatively little stigma, ranking it among the four lowest sources of disease stigma (Westbrook, Legge, and Pennay 1993). Similarly, in a 2013 review, people who did not live with the illness generally did not perceive it as an active nexus for stigma (Schabert et al. 2013). However, in a follow-up paper, researchers asked Australians who do live with type 2 diabetes about their lived experiences of stigma. Of the participants, 84% reported experiencing diabetes-related stigma.

Stigma is structural. It is a creature of social power, and is driven by the same upstream, deeply-rooted factors that determine distributions of power and social capital. Because stigma is fundamentally connected to power, the social spaces in which stigma occurs typically feature a number of intersecting stigmas. In few contexts is this as apparent as in the case of epidemic disease. The history of epidemic and pandemic disease shows how prominent stigmas tracking race, alienage, and disability are especially common in the West. In fact, the explicit stigma directed against Asian-Americans in the US during the COVID-19 pandemic has a close precedent over a century earlier, in San Francisco.

III. PLAGUE AND PREJUDCIE IN EARLY TWENTIETH-CENTURY SAN FRANCISCO

Outbreaks of infectious disease track existing social prejudices. While this is unsurprising, it does underscore the benefits of conceptualizing stigma as rooted in the same factors that drive networks of power and capital in society. Perhaps most relevant to the contemporary COVID-19 pandemic are two outbreaks of bubonic plague that occurred in San Francisco in 1900 and 1907, respectively (Risse 2012; Shah 2001; McClain 1988; Kalisch 1972). Anti-Asian racism in the US obviously antedated the plague outbreaks; infectious disease stigma typically amplifies various preexisting stigmas. Joanna Trauner (1978) classifies six forms that virulent anti-Asian racism of the last quarter of the nineteenth century typically followed: Economic, Cultural, Assimilationist, Explicitly racist (white homogeneity), Biological, and Medical.

White Americans expressed economic anxieties that East Asians would take their jobs. They denigrated the traditions of East Asian peoples, declaring their cultures less civilized and more primitive than that of White Americans. Americans doubted that East Asian immigrants would ‘properly’ assimilate into dominant culture, and sometimes expressed overtly racialized concerns that East Asian immigrants would dilute the (mythical) White homogeneity of the US. Over the long nineteenth century, public health activities centered on municipal boards of health expanded in scope (Warner and Tighe 2001; Duffy 1992). This increased authority converged with the increasing organization and professionalization of allopathic medicine (Starr 1982). The language and augmented social, legal, and political authority of medical and public health officials created an atmosphere in which physicians and public health leaders issued bromides against Chinese-Americans based on ideas of inferior biology—that because they were of less hardy ‘stock’ than White Americans, they were more susceptible to illness and disease. The increasing influence of scientific racism and American eugenics also shaped some of these biological arguments. Finally, even those who doubted the merits of the biological arguments often suggested that the particular conditions in which East Asian immigrants lived made them both more susceptible to disease and more likely to spread it. While this last claim can form the basis of a structural account of the effects of deprivation and racism, the “medical” argument was more commonly used to suggest East Asian communities and people were responsible for their living conditions.[2]

One critical idea that has significant implications for COVID-19 stigma is that racialized stigmas about infectious disease easily crossed causal theories during this time period. In the middle decades of the nineteenth century, the miasma theory still dominated causal attributions of infectious disease. Thus, contemporaries spoke of the “foul and disgusting vapors in Chinatown” and referred to it as a “laboratory of infections” (Trauner 1978). By the late 1890s and into the first decade of the twentieth century, the germ theory of disease had taken sufficient hold among physicians and public health officials. Yet racism and racialized ideas of plague and infectious disease easily crossed these different causal theories. This fact is unsurprising given that stigma is fundamentally structural. That is, there is almost nothing in the structural model of stigma that connects the existence of health and disease stigma to scientific and health illiteracy. Stigma is not even mostly a function of ignorance. The godfather of stigma studies, Erving Goffman, observed that people who live close together for centuries can know each other intimately and nourish mutual hatred and stigmatization (1963, 63). Historian Andrea Patterson (2009) has ably documented how advances in microbiology in the Progressive Era were easily assimilated into existing racisms in the Jim Crow South. Thus, the evidence that familiarity or technical understanding is an enduring, robust anti-stigma intervention is weak. Similarly, while there may be good independent reasons to educate people on the scientific and epidemiologic facts regarding COVID-19, there is little reason to mark such education as an effective anti-stigma remedy. Stigma is a creature of social power. Ignorance may in some circumstances exacerbate its prevalence and impact, but it is a serious conceptual mistake to think that remediation of such ignorance is a promising pathway to ameliorating COVID-19 stigma. This argument reinforces a point made earlier: If we do not understand the concept of stigma the interventions we design and prioritize to ameliorate it will almost certainly be less or even in- effective.

In 1880, well before plague struck San Francisco, the municipal health board declared the entire neighborhood of Chinatown a public nuisance (Risse 2012). Public health law scholars have argued that nuisance law can be a powerful form of public health governance (Gostin and Wiley 2016), as well as one that can be used to enact and intensify racial stigma (Godsil 2004). Indeed, laws regulating space and geography, such as housing, provide an effective and horrifying example of the ways in which racism structures power and resources against African-Americans in the US—with devastating health consequences (Osypuk and Acevedo-Garcia 2010; Bolin, Grineski, and Collins 2005). In 1896, the health board enacted a maritime quarantine against all Chinese and Japanese passengers. On March 6, 1900, an autopsy confirmed bubonic plague as the cause of death of a Chinese-American man.

The very next day, the health board drew a sanitary cordon around Chinatown, targeting about ten to fifteen thousand people inside its boundaries. Officials began to cordon off the neighborhood with barbed wire. Further details of this cordon, as well as the plague outbreaks of 1900 and 1907, are critical, and are covered in a rich and compelling historiography (Risse 2012; Shah 2001; McClain 1988; Kalisch 1972). For purposes of this commentary, it is especially important to note how public health law easily mediates preexisting stigma and racism (Burris 2002). Indeed, given the fact that law and social policy are more upstream social structures, it would be shocking indeed if they did not instantiate such stigmas (Goldberg 2017; Burris 2002). On March 22, 1900, the health board announced that (1) Chinatown was infected with plague, (2) Chinese people were concealing the scope of the disease, and (3) the media was suppressing news of the plague. The second and third of these claims should feel depressingly familiar to contemporary observers, which demonstrates why understanding history is so important to clear thinking in public health ethics, policy, and law: what is new is old.

In the upcoming weeks and months, various states and Canadian provinces quarantined California. In May 1900, President McKinley barred Chinese and Japanese people from traveling outside the state. The health board’s official public health orders declaring the involuntary quarantine of Chinatown became effective in late May, and almost immediately thereafter, a Chinese-American man named Jew Ho filed a lawsuit that formed the basis of the critical case of Jew Ho v. Williamson, 103 F. 10 (N.D. Cal. 1900).

Jew Ho is a hugely important case in the history of public health law in the US. The plaintiff faced an uphill challenge in prevailing. Although the full scope of state authority to regulate in the name of public health would not be established until the US Supreme Court’s 1907 decision in Jacobsen v. Massachusetts, there was little doubt even in 1900 that the state’s authority to regulate, especially in a public health emergency, was vast. The district court explained that

this court will, of course, uphold any reasonable regulation that may be imposed for the purpose of protection the people of the city from the invasion of epidemic disease. In the presence of a great calamity, the court will go to the greatest extent, and give the widest discretion, in construing the regulations that may be adopted by the board of health or the board of supervisors.[3]  

Indeed, as the COVID-19 pandemic illustrates, the scope of a state’s police power to regulate in the name of public health, especially in dealing with an epidemic disease, is immense. The breadth of state power in the US federalist system is arguably the basis for the study of public health law in the US—the expansive state powers can and have been used for great ill as well as for good, and balancing a commitment to individual rights and social justice with needed actions in the name of public health is a fraught and difficult endeavor (Gostin and Wiley 2016; Wiley 2012).

Yet, the court noted in Jew Ho, there are limits to those powers even in the face of an outbreak of communicable disease. The court expressed particular concern over the inefficacy of the cordon. There was no indication that plague was strictly confined to Chinatown; the cordon would be likely to intensify the outbreak, putting virtually everyone in the city in greater danger. Moreover, the court also noted the invidious racism of the law:

The evidence here is clear that this [law] is made to operate against the Chinese population only, and the reason given for it is that the Chinese may communicate the disease from one to the other. That explanation, in the judgment of the court, is not sufficient. It is, in effect, a discrimination, and it is the discrimination that has been frequently called to the attention of the federal courts where matters of this character have arisen with respect to Chinese.[4]

The court observed that the public health order specifically exempted dwellings within the cordon owned by White people and concluded that this was indisputable proof of the explicit racism embodied in the law. Ultimately, the court invalidated the law, concluding that it was “unreasonable, unjust, and oppressive,” and violated the Equal Protection Clause of the US Constitution.

The plague outbreaks in San Francisco in the early twentieth century, as well as Jew Ho, offer several important lessons for thinking about COVID-19 stigma and our ethical obligations to remedy such stigma. First, explicit racial stigma against people of Asian descent given an outbreak of epidemic disease in the US is not new. Second, public health law is a frequent and often effective prism for channeling preexisting stigma against marginalized and oppressed groups, especially along the axis of race. Third, where public health is a mediator of racial stigma, it can be wielded for good as well as for ill. Although the weight of history suggests law and social policy all too frequently are utilized to intensify racial and disease stigma, Jew Ho illustrates that they can also be used to ameliorate the impact of such stigma. As Blake and Hatzenbuehler (2019) recently suggested, antidiscrimination and civil rights law in particular, if enforced, are powerful vehicles for remedying stigma at the structural level. Moreover, using law and social policy to combat stigma is a high-priority anti-stigma intervention precisely because laws are upstream, macrosocial structures that can exert an enormous influence on behavior if not on norms.

Historians such as Randall Packard (1989) and Saul Dubow (1995) have also documented another excellent example of the structural connections between infectious disease stigma, racism, and law, this in modern South Africa. There, White settlers and medical authorities drew on similar ideas of biological inferiority and physiological differences “in explaining the apparently higher susceptibility of Africans to disease” (Packard 1989, 196). Moreover, medical officials used these racialized concepts of disease to initiate processes of residential and physical racial segregation (ibid., 195). Public health and sanitary laws were then enacted that codified these geographies, as Harriet Deacon has noted: “public health legislation for plague control permitted more systematic residential segregation of Africans from whites in many Cape towns in the early twentieth century” (1996, 289). And Susan Parnell explains how South African capitalists used public health legislation to “export British planning practices … [to] nurture the emerging racial and class differences” (1993, 472). Parnell also documents the explicit intention of Dr. Charles Porter, the powerful medical officer of health for the city of Johannesburg, to base town planning laws almost entirely on the public health justification for racial segregation (ibid). 

Ultimately, if stigma is an independent social determinant of health, and if law is a structural anti-stigma mechanism, it follows that law is a social determinant of health. The empirical evidence overwhelmingly supports this claim. Law is a powerful social determinant of health (Hoss 2019; Burris 2011). This fact has significant implications for priority-setting in countering COVID-19 stigma.

IV. LEGAL EPIDEMIOLOGY AND THE USE OF PUBLIC HEALTH LAW AS ANTI-COVID-19-STIGMA MECHANISMS

Legal epidemiology is “the scientific study and deployment of law as a factor in the cause, distribution, and prevention of injury and disease in a population” (Burris, Cloud, and Penn 2020, S4). In the field, laws are regarded as epidemiologic exposures. Consider the subfield of social epidemiology, which focuses on the links between socioeconomic conditions and population health outcomes. Pioneering social epidemiologist Nancy Krieger has developed the idea of embodiment, through which both salubrious and deleterious socioeconomic conditions become literally embodied in ways that powerfully determine health across the life span (Krieger 2005). It is axiomatic among social epidemiologists that laws and social policies, or their absence, is a primary mechanism through which affluence or deprivation becomes embodied. Thus, robust social welfare policies that protect the least well-off and buffer the impact of structural deprivation can limit the extent to which these conditions diminish health.

If laws and social policies are such powerful mechanisms for channeling the enormous impact of social conditions on health and its distribution in human population, it follows that the laws and policies themselves can fairly be regarded as epidemiologic exposures akin to any other (e.g., toxicants, tobacco, hazardous working conditions). Even so, until very recently laws and policies were not studied using prominent methods in epidemiologic science. One obvious reason for this lacuna is that studying law in this way requires inter- and transdisciplinary approaches (Burris et al. 2016); lawyers and legal scholars are not traditionally equipped with the needed epidemiologic and methodological training, and epidemiologists do not typically maintain legal expertise. A second reason is that studying law as an epidemiologic exposure is methodologically difficult. Polities are not closed systems, and given the myriad confounders, it is difficult to show how a change in a law caused a particular health outcome.

Nevertheless, there is every reason to believe that changes in laws and social policies do cause particular health outcomes, which makes the study of legal epidemiology worthwhile and important. While the emerging field has come relatively far in its short existence, the use of legal mechanisms to combat stigma at the structural level remains incipient. The vast majority of anti-stigma mechanisms remain targeted at downstream manifestations, and are plagued by what I have referred to as “methodological individualism” (Goldberg 2012). Methodologically individualist approaches see the individual as the primary unit of change, and there is excellent evidence that interventions characterized by such an approach tend to be ineffective (ibid.). While anti-stigma interventions focused on changing individual attitudes, practices, and beliefs do show some anti-stigma effects (Corrigan et al. 2001), these effects are both modest and transient (Gronholm et al. 2017).

This observation itself underscores an important point: whether a given intervention reduces COVID-19 or any other kind of stigma is an empirical question.[5] Public health and social science has many validated scales that can be used to measure stigma, and anti-stigma interventions should be rigorously evaluated for impact. Such interventions should also be evaluated for specificity—are they overtly directed at alleviating stigma or is that simply an expected co-benefit?

Wicked problems like stigma, especially in the face of a terrifying pandemic, are unlikely to be resolved by a single approach or intervention. Instead, what is required is a policy bundle that integrates a number of different interventions in the hopes of reducing the devastating impact of infectious disease stigma that so commonly tracks race, class, gender, and disability status. Within this bundle, there is room even for methodologically individualist interventions that demonstrate efficacy. However, it would be unethical for empowered moral agents to rely on such interventions alone, and at least ethically suboptimal to prioritize such interventions over interventions that are targeted at upstream, macrosocial structures (Goldberg 2012). Legal epidemiology suggests that law- and policy-centered approaches are promising because they are more closely connected to the root structural factors driving the stigmas that operate in the social space of epidemic disease. What might such laws and policies look like?

Yet again, understanding stigma as structural can be of assistance. There is no shortage of invidious, person-centered racism that COVID-19 has activated. At one point in mid-March, the advocacy group Stop AAPI Hate had documented more instances of anti-Asian-American racism (over 1,100) than COVID-19 deaths in the US. Explicit antisemitism has also waxed, with blood libel accusations in France that Jews were once again poisoning the proverbial wells, and ultra-Orthodox Jews in Brooklyn being shamed and beaten for congregating in small groups. The mayor of New York City came under significant criticism for angrily denouncing crowds of Jews gathering to mark the COVID-19 death of an important rabbi while he said little publicly about the many gatherings of non-Jewish people occurring contemporaneously in the city.

But stigma is insidious. It tracks existing networks of social power and deprivation, and therefore structural and institutional racism has made a powerful imprint on the course and impact of COVID-19 across and within the US in particular. The terrible inequalities in the prevalence, incidence, and severity of COVID-19 especially on Black and Brown people must be centered in any conversation on COVID-19 stigma and racism. The statistics are horrifying (Table 1).

Table 1 (data sourced from The COVID Racial Data Tracker, https://covidtracking.com/race)

In Michigan, African-Americans comprise 39% of COVID-19 cases and 43% of deaths, despite making up only 14% of population. In Louisiana, data from early April indicated that African-American people constituted 57% of the deaths from COVID-19 (they make up 33% of the population). Similarly large differences for African-Americans are evident in Arkansas and Kansas, and for positive cases among Latinx populations in Colorado, Illinois, Minnesota, and Massachusetts (Table 2).

Table 2 (data sourced from The COVID Racial Data Tracker, https://covidtracking.com/race)

And then there is the toll COVID-19 is taking on Indigenous Peoples in the US. At the time of this writing, the Navajo Nation has the highest per-capita rate of positive COVID-19 cases in the US. According to a recent Washington Post article, “One-third of the homes across the vast, dry reservation don’t have running water, forcing families to haul it in. Many in close-knit Navajo communities live in crowded houses where self-quarantine is impossible, and many must drive hours to the nearest grocery store” (Fonseca and Sullivan 2020). Native Americans make up about 10% of the overall population in New Mexico and account for 59% of the cases.

Although racial health inequalities are increasingly well-reported and well-documented, it is vital to see these inequalities as a product of the same kinds of structural stigma and racism discussed in this paper. The invidious, explicit bigotry directed at Asian-Americans and people of Asian descent in the US is racism. But racism is also the inequitable morbidity and mortality of COVID-19. The former is more likely to be individual and person-centered. The latter is structural and institutionalized, but no less a manifestation of stigma power.

In mid-March 2020, a Native American health center in Washington state requested needed personal and protective equipment (“PPE”) from state and federal agencies. In early May, the health center received: a box of body bags (Ortiz 2020). Indigenous health leader Abigail Echo-Hawk noted that “this is a metaphor for what’s happening” and asked “are we going to keep getting body-bags or are we going to get what we actually need?” (ibid.). The 2007 documentary film Unnatural Causes explicitly addressed the ways in which the attempted genocide of and historical racism directed at Native Americans caused the staggering inequalities in type 2 diabetes among the Tohono O’odham. The film notes the influence of the Coolidge Dam in diverting the water of the Gila River, which Native peoples had relied on for centuries. The racism here is literally embodied in a structure, but its downstream impacts are no less evident in the flows of COVID-19 at the present and its impact on Native Peoples and communities.

As noted above, a given intervention’s efficacy in countering stigma is an empirical question. Micro-level approaches are needed but are almost certainly insufficient. Meso- and macro-level approaches are more difficult to design and implement, but are likely to have much greater impact in reducing disease stigma and the linked stigmas that infectious disease typically intensifies in times of epidemic and pandemic. Blake and Hatzenbuehler’s (2019) recent article suggests antidiscrimination and civil rights laws as fruitful vehicles for macrosocial change. Similarly, researchers led by Nancy Krieger (Krieger et al. 2014) have documented the health impact of federal civil rights laws in the Jim Crow South. However, the time horizon for enacting such laws, especially on the federal level, is long indeed, and may depend significantly on the vagaries and preferences of administrations and political power. Even on the individual state level, the time horizon for such changes may be lengthy.[6]

In contrast, meso-level law and policy structures represent a promising pathway towards addressing structural stigma in a shorter time frame than that required to change laws and policies at the highest levels. Every health-oriented organization has local policies; some, like local health departments, have lawmaking power as well. These policies and laws can have an enormous influence on the extent to which a person touched by the given organization experiences stigma and racism. Some such interventions will require that lawmaking authority, as in the City of Reykjavik’s 2016 decision to change its Human Rights Policy to make weight a protected category (City of Reykjavik 2020). But even absent such authority, within the bounds of existing laws and regulations, health systems are empowered to change their own policies as they see fit. As to COVID-19, and for example, policies could be issued in ways that encourage appropriate language use, especially when care teams are serving people of color. This should not be understood as the mere policing of language; the power of naming is enormous, and the philosophy of language establishes beyond question that language is a primary conceptual scheme. Unsurprisingly, language is also powerful freight for stigma and racism, and therefore intentional changes in language can ameliorate structural stigma and racism (they can also perpetuate such stigma, as in the continued insistence in referring to the novel coronavirus as the “Chinese virus”). Decades of data also document the ways in which people of color’s testimony regarding their own illness symptoms are typically invalidated, disbelieved, and de-legitimized (Buchman, Ho, and Goldberg 2017). Scouring policies and guidelines for protocols that instantiate and sustain these cultures of epistemic injustice can help counter structural stigma and racism; a health system could, for example, issue a guideline reminding care teams that complaints about shortness of breath, fatigue, or pain must be trusted as prima facie valid even in the absence of laboratory findings that enable clinical correlation.

But meso-level approaches can also be used in ways that address the structural racism that drives racial COVID-19 inequalities. In partnership with states, local governments can change zoning and housing ordinances, suspend eviction proceedings and utility shut-offs, and minimize law enforcement activities against vulnerable populations for people experiencing homelessness and housing insecurity (Benfer and Wiley 2020). Local governments can schedule administrative hearings and agencies can issue findings. Table 3 summarizes some of the suggested meso-level approaches that embrace law and a policy as tools to alleviate structural stigma.

Table 3 Meso-Level Anti-Stigma Law/Policy Interventions by Sector

Law is a social determinant of health. The measurement of law as an epidemiologic exposure remains incipient, and this is certainly true with regard to structural stigma. Although stigma has been measured for decades, the unit of measurement has consistently been the individual, with group-level data obtained by aggregating measurements of individuals. While this method is both valid and useful, it is not truly a measure of stigma at the structural level. Different tools are needed to evaluate whichlaws and policies promote stigma and which inhibit it. Data like these can then be integrated in the design of laws and policies that promise greater efficacy in the remediation of structural stigma. 

V. CONCLUSION

Having accurate concepts of given health problems is crucial for designing, implementing, and delivering interventions for their remediation. Where a problem is misapprehended, the likelihood diminishes that the intervention will improve the problem substantially and/or with enduring effects. This is almost certainly the case with stigma, which has typically been measured in health contexts via methodologically individualist techniques.

Stigma is an independent social determinant of health, and like most such determinants, is primarily driven by upstream, structural factors connected to historical patterns of domination, subordination, and oppression. Interventions for stigma must therefore act on the structural level, even as part of a policy bundle that should include meso- and micro-level remedies. Legal and policy mechanisms are especially promising interventions precisely because they are often themselves upstream structural factors in producing health and its distribution. While, all too often in US history, laws and policies have been used to intensify preexisting stigmas during infectious disease outbreaks, the fact that public health law mediates stigma means it can be harnessed to ameliorate stigma. The basic insight at the core of legal epidemiology can help stakeholders harness the power of law and policy: law is a social determinant of health. It can be measured and assessed for its impact in promoting or inhibiting stigma, and such data can then be deployed in the design and implementation of law and policy approaches that promise greater efficacy in the remediation of structural stigma.

Although this analysis and approach can be utilized against virtually any form of health- and disease-related stigma, epidemic disease typically intensifies preexisting prejudices and stigmas that intersect with the disease stigma itself. COVID-19 is only the latest example, and shows well how outbreaks amplify both person-centered, explicit racism and the structural, institutionalized racism that is responsible for racial health inequalities in the US. Where stigma and racial animus are functions of power and oppression, it is critical to de-prioritize downstream, individualistic interventions that may provide ancillary benefits but do not demonstrate robust anti-stigma effects.

Ultimately, laws and policies should be prioritized as primary anti-stigma mechanisms, and can be targeted at both macro- and meso-levels given the different plausibility profiles and time horizons needed for each. The ethical imperative for countering stigma is clear, but there are also strong epidemiologic justifications for prioritizing anti-stigma interventions as well. These rationales are no weaker and are arguably stronger in times of epidemic and pandemic disease, like COVID-19.

REFERENCES

Benfer, Emily A., and Lindsay F. Wiley. 2020. “Health Justice Strategies To Combat COVID-19: Protecting Vulnerable Communities During A Pandemic.” Health Affairs Blog, March 19. https://www.healthaffairs.org/do/10.1377/hblog20200319.757883/full/.

Blake, Valarie K., and Mark L. Hatzenbuehler. 2019. “Legal Remedies to Address Stigma‐Based Health Inequalities in the United States: Challenges and Opportunities.” The Milbank Quarterly 97 (2): 480–504.

Bolin, Bob, Sara Grineski, and Timothy Collins. 2005. “The Geography of Despair: Environmental Racism and the Making of South Phoenix, Arizona, USA.” Human Ecology Review : 156–68.

Buchbinder, Mara, Dragana Lassiter, Rebecca Mercier, Amy Bryant, and Anne Drapkin Lyerly. 2016. “‘Prefacing the Script’ As an Ethical Response to State-mandated Abortion Counseling.” AJOB Empirical Bioethics 7 (1): 48–55.

Buchman, Daniel Z., Anita Ho, and Daniel S. Goldberg. 2017. “Investigating Trust, Expertise, and Epistemic Injustice in Chronic Pain.” Journal of Bioethical Inquiry 14 (1): 31–42.

Burris, Scott. 2002. “Disease Stigma in US Public Health Law.” The Journal of Law, Medicine & Ethics 30 (2): 179–90.

———. 2011. “Law in a Social Determinants Strategy: A Public Health Law Research Perspective.” Public Health Reports 126 (3 suppl): 22–27.

Burris, Scott, Ichiro Kawachi, and Austin Sarat. 2002. “Integrating Law and Social Epidemiology.” Journal of Law, Medicine, & Ethics 30: 510–21.

Burris, Scott, Lindsay K. Cloud, and Matthew Penn. 2020. “The Growing Field of Legal Epidemiology.” Journal of Public Health Management and Practice 26: S4–S9.

Burris, Scott, Marice Ashe, Donna Levin, Matthew Penn, and Michelle Larkin. 2016. “A Transdisciplinary Approach to Public Health Law: The Emerging Practice of Legal Epidemiology.” Annual Review of Public Health 37: 135–48.

City of Reykjavik. 2020. “The City of Reykjavik’s Human Rights Policy.” Revised October 18, 2016.   https://reykjavik.is/en/city-of-reykjaviks-human-rights-policy#6.%20Body%20build%20and%20type.

Corrigan, Patrick W., L. Philip River, Robert K. Lundin, et al. 2001.“Three Strategies for Changing Attributions about Severe Mental Illness.” Schizophrenia Bulletin 27 (2): 187–95.

Courtwright, Andrew. 2009. “Justice, Stigma, and the New Epidemiology of Health Disparities.” Bioethics 23 (2): 90–96.

———. 2013. “Stigmatization and Public Health Ethics.” Bioethics 27 (2): 74–80.

Deacon, Harriet. 1996. “Racial Segregation and Medical Discourse in Nineteenth‐century Cape Town.” Journal of Southern African Studies 22 (2): 287–308.

Dubow, Saul. 1995. Scientific Racism in Modern South Africa. Cambridge University Press.

Duffy, John. 1992. The Sanitarians: A History of American Public Health. University of Illinois Press.

Fonseca, Felicia, and Tim Sullivan. 2020. “In Close-knit Navajo Nation Communities, Virus Takes Hold.” Washington Post, April 11. https://www.washingtonpost.com/health/in-close-knit-navajo-nation-communities-virus-takes-hold/2020/05/11/a1946770-9395-11ea-87a3-22d324235636_story.html.

Gioia, Dennis A., and Peter P. Poole. 1984. “Scripts in Organizational Behavior.” Academy of Management Review 9 (3): 449–59.

Godsil, Rachel D. 2004. “Viewing the Cathedral from Behind the Color Line: Property Rules, Liability Rules, and Environmental Racism.” Emory LJ 53: 1807.

Goffman, Erving. 1963. Stigma: Notes on the Management of Spoiled Identity. Simon and Schuster.

Goldberg, Daniel S. 2012. “Social Justice, Health Inequalities and Methodological Individualism in US Health Promotion.” Public Health Ethics 5 (2): 104–15.

———. 2017. “On Stigma & Health.” Journal of Law, Medicine, & Ethics 45: 475–83.

Gostin, Lawrence O., and Lindsay F. Wiley. 2016. Public Health Law: Power, Duty, Restraint. University of California Press.

Greely, Henry J. 2020. “COVID-19 Immunity Certificates: Science, Ethics, Policy, and Law.” Journal of Law and Biosciences, lsaa035, https://doi.org/10.1093/jlb/lsaa035.

Gronholm, Petra C., Claire Henderson, Tanya Deb, and Graham Thornicroft. 2017. “Interventions to Reduce Discrimination and Stigma: The State of the Art.” Social Psychiatry and Psychiatric Epidemiology 52 (3): 249–58.

Hoss, Aila. 2019. “Federal Indian Law as a Structural Determinant of Health.” The Journal of Law, Medicine & Ethics 47 (4 suppl): 34–42.

Kalisch, Philip A. 1972. “The Black Death in Chinatown: Plague and Politics in San Francisco 1900-1904.” Arizona and the West 14 (2): 113–36.

Kendi, Ibram X. 2016. Stamped from the Beginning: The Definitive History of Racist Ideas in America. Bold Type Books.  

Kofler, Natalie, and Françoise Baylis. 2020. “Ten Reasons Why Immunity Passports are a Bad Idea.” Nature  581: 379–81.

Kraut, Alan M. 1994. Silent Travelers: Germs, Genes, and the Immigrant Menace. Johns Hopkins University Press.

Krieger, Nancy. 2005. “Embodiment: A Conceptual Glossary for Epidemiology.” Journal of Epidemiology & Community Health 59 (5): 350–55.

Krieger, Nancy, Jarvis T. Chen, Brent A. Coull, Jason Beckfield, Mathew V. Kiang, and Pamela D. Waterman. 2014. “Jim Crow and Premature Mortality Among the US Black and White Population, 1960–2009: An Age–Period–Cohort Analysis.” Epidemiology (Cambridge, Mass.) 25 (4): 494.

Leavitt, Judith Walzer. 1996. Typhoid Mary: Captive to the Public’s Health. Beacon Press.

Link, Bruce G., and Jo Phelan. 2014. “Stigma Power.” Social Science & Medicine 103: 24–32.

McClain, Charles. 1988. “Of Medicine, Race, and American Law: The Bubonic Plague Outbreak of 1900.” Law & Social Inquiry 13 (3): 447–513.

Ortiz, Erik. 2020. “Native American Health Center Asked for COVID-19 Supplies. It got Body Bags instead.” NBC News, Mary 6. https://www.nbcnews.com/news/us-news/native-american-health-center-asked-covid-19-supplies-they-got-n1200246.

Osypuk, Theresa L., and Dolores Acevedo-Garcia. 2010. “Beyond Individual Neighborhoods: A Geography of Opportunity Perspective for Understanding Racial/Ethnic Health Disparities.” Health & Place 16 (6): 1113–23.

Packard, Randall M. 1989. White Plague, Black Labor: Tuberculosis and the Political Economy of Health and Disease in South Africa, Volume 23. University of California Press.

Parnell, Susan. 1993. “Creating Racial Privilege: The Origins of South African Public Health and Town Planning Legislation.” Journal of Southern African Studies 19 (3): 471–88.

Patterson, Andrea. 2009. “Germs and Jim Crow: The Impact of Microbiology on Public Health Policies in Progressive Era American South.” Journal of the History of Biology 42 (3): 529.

Persad, Govind, and Ezekiel J. Emanuel. 2020. “The Ethics of COVID-19 Immunity-Based Licenses (“Immunity Passports”).” JAMA 323 (22): 2241–42.

Phelan, Jo C., Jeffrey W. Lucas, Cecilia L. Ridgeway, and Catherine J. Taylor. 2014. “Stigma, Status, and Population Health.” Social Science & Medicine 103: 15–23.

Risse, Guenter B. 2012. Plague, Fear, and Politics in San Francisco’s Chinatown. Johns Hopkins University Press.

Rosenberg, Charles E. 1992. Explaining Epidemics. Cambridge University Press.

———–. 2009. The Cholera Years: The United States in 1832, 1849, and 1866. University of Chicago Press.

Schabert, Jasmin, Jessica L. Browne, Kylie Mosely, and Jane Speight. 2013. “Social Stigma in Diabetes.” The Patient-Patient-Centered Outcomes Research 6 (1): 1–10.

Shah, Nayan. 2001. Contagious Divides: Epidemics and Race in San Francisco’s Chinatown, Volume 7. University of California Press.

Smith, Kylie. 2020. Talking Therapy: Knowledge and Power in American Psychiatric Nursing. Rutgers University Press.

Starr, Paul. 1982. The Social Transformation of American Medicine: The Rise of a Sovereign Profession and the Making of a Vast Industry. Basic Books.

Tomes, Nancy. 1999. The Gospel of Germs: Men, Women, and the Microbe in American Life. Harvard University Press.

Trauner, Joan B. 1978. “The Chinese as Medical Scapegoats in San Francisco, 1870-1905.” California History 57 (1): 70–87.

Warner, John Harley, and Janet A. Tighe (editors). 2001. Major Problems in the History of American Medicine and Public Health: Documents and Essays. Wadsworth Publishing Company.

Westbrook, Mary T., Varoe Legge, and Mark Pennay. 1993. “Attitudes Towards Disabilities in a Multicultural Society.” Social Science & Medicine 36 (5): 615–23.

Wiley, Lindsay F. 2012. “Rethinking the New Public Health.” Wash. & Lee Law Review 69: 207.

[1] Most of the substantive claims laid out in this section have been developed and rigorously sourced in (Goldberg 2017). Therefore, references in this section will be limited to substantiating novel claims or supplementing with newer research and data.

[2] This itself is a core part of older doctrines of “moral hygiene,” and its distinctly classist form is a well-studied topic in the history of public health and the history of nursing (Smith 2020; Rosenberg 1992).

[3] Jew Ho v. Williamson, 103 F. 10 (C.C.N.D. Cal. 1900), at 21.

[4] Jew Ho v. Williamson, 103 F. 10 (C.C.N.D. Cal. 1900).

[5] The ethical obligation to remedy stigma is almost self-evident, although commentators have supplied the necessary arguments to ground the mandate (see Goldberg 2017, citing references; Courtwright 2009; 2013).

[6] It may be more tenable in the short to intermediate term to focus on changing enforcement priorities and approaches to existing antidiscrimination and civil rights laws. While there is no doubt enforcement is crucial, measuring commitment to and levels of enforcement is an enormous challenge. As an emerging field, legal epidemiology to date has focused on measuring codified law and has not yet emphasized assessment of enforcement and implementation.

                             Thu, 18 Jun 2020 01:35:41 +0000

Daniel S. Goldberg