The case for demedicalizing stigma research

Introduction

Researchers have spent decades attempting to develop ways to combat many forms of stigma. Yet the levels of stigma for many ways of being have been stable or even increased over time, suggesting that existing approaches have not been effective for producing meaningful stigma reduction (Pescosolido, 2013; Pescosolido et al., 2021; Tomiyama et al., 2015). Although researchers have found that stigma interventions can produce small or moderate reductions in stigma, some stigma interventions intensify stigma rather than reducing it, and there is generally little evidence that such interventions produce long-lasting stigma reductions (Corrigan, 2018). Many stigma researchers have argued that new theoretical approaches are needed to produce more effective strategies for combating stigma (e.g. Birbeck et al., 2019). Other researchers coming from an explicitly critical perspective have made similar claims, arguing that “[O]ne of the major limitations of existing understandings of stigma is the ways in which [stigma researchers] have ‘bracketed off’ key questions, such as where stigmatizing attitudes come from, how and by whom is stigma crafted, mediated, produced, and why” (Tyler and Slater, 2018: 736). In other words, though the body of research on stigma has grown significantly in the past 30 years, there is a persistent sense among many stigma researchers that we have collectively missed something fundamental about stigma and how it works.

One assumption that stigma researchers have increasingly come to question is the idea that medicalization reduces stigma. Decades of social science research have cast doubt on the assumption that medicalization is destigmatizing. Numerous reviews and meta-analyses have found that portraying a way of being as having a biomedical cause does not meaningfully reduce stigmatizing beliefs and attitudes toward stigmatized mental illnesses (Angermeyer et al., 2011; Kvaale et al., 2013a, 2013b; Read et al., 2006; Schomerus et al., 2012). Other medicalization efforts, such as the proliferation of direct-to-consumer pharmaceutical ads, have also failed to reduce mental illness stigma (Payton and Thoits, 2011), and an analysis of 4.7 million news articles covering 106 diseases found no relationship between medicalization and stigma (Best and Arseniev-Koehler, 2023). More broadly, as Pescosolido and Martin wrote a decade ago, “One clear conclusion from research over the past 14 years is that focusing on improving knowledge [i.e., by advancing a biomedical view] has limited value” in reducing stigma (Pescosolido and Martin, 2015: 105).

Corrigan’s (2018) analysis of anti-mental illness stigma campaigns provides a starting point for understanding the constraints of medicalizing interventions. He distinguishes between anti-stigma campaigns with a “services agenda,” which aim to decrease label avoidance and increase treatment seeking, and anti-stigma campaigns with a “rights agenda,” which aim to decrease public stigma. Corrigan argues that these agendas compete: more resources are allocated to the services agenda, and its treatment-focused messages can undermine the messages of the rights agenda. By distinguishing between campaigns to promote care seeking and campaigns to reduce public stigma, Corrigan effectively identifies undertreatment and public stigma as separate problems. Though he describes these agendas as being in tension, he classifies both as “anti-stigma” in nature.

Starting from Corrigan’s insight that undertreatment and public stigma are different problems, we interrogate the tension between medicalization and destigmatization and the implications of this tension for basic stigma research. Here, basic stigma research refers to research that does not intervene on stigma. Basic stigma research necessarily involves decisions about what to study, what questions to ask, and how. These decisions shape what kind of knowledge is produced, and different kinds of knowledge support different types of interventions. If medicalization does not destigmatize, and if anti-stigma campaigns that prioritize undertreatment are in competition with those that prioritize public stigma, then stigma researchers must understand the goals of medicalization and destigmatization as distinct. Because medicalization and destigmatization are distinct goals in competition, research that enables future medicalizing interventions is unlikely to enable future destigmatizing interventions. Some kinds of basic stigma research are more likely to provide empirical guidance for medicalization efforts, while other kinds are more useful for guiding destigmatization efforts.

While stigma researchers have come to question the idea that medicalization reduces stigma, much of basic stigma research has been framed and designed in ways that indirectly enable medicalization rather than destigmatization. In this article, we argue that effectively combating stigma requires demedicalizing basic stigma research. Medicalizing ideas, assumptions, theories, and methods have curtailed our ability to produce knowledge about stigma that enables destigmatization efforts. By centering the goal of medicalization, stigma research has made it harder to advance our understanding of what will meaningfully combat the sociocultural devaluation of a wide range of stigmatized ways of being. The solution is to demedicalize stigma research by disentangling these two goals and pursuing research that enables destigmatization.

We present a critical analytical review of stigma research, with the goal of opening up new lines of research into stigma. We begin by defining key concepts: stigma, destigmatization, stigma mitigation, and medicalization. Next, we review the different ways that the medicalization of stigma research manifests: in the impetus and justification for stigma research, in the selection of outcomes studied, and in the frequent use of attribution theory-based approaches. We show that stigma research frequently portrays it as a problem of undertreatment. Stigma research prioritizes studying the effects of public stigma over its causes and often uses a theoretical approach (attribution theory) that benefits medicalization but is irrelevant to the goal of destigmatization. We then suggest three strategies for demedicalizing stigma research and advancing the goal of destigmatization. First, researchers need to differentiate research that enables destigmatization from research that enables medicalization or stigma mitigation. Second, we need research that focuses on studying public and structural stigma as outcomes, rather than as predictors of other outcomes. Finally, researchers should draw on a broader range of scholarship to construct new theories of sociocultural devaluation. We need to demedicalize stigma research not only to enable better destigmatizing interventions, but also to enable the efforts of activists seeking to destigmatize.

Defining key concepts

We begin by defining the key concepts used in this article: way of being, stigma, destigmatization, stigma mitigation, and medicalization. A way of being is a characteristic, pattern of behavior, or bodily state; having red hair, being tall, using cocaine frequently, and having high blood pressure are all ways of being. Some ways of being are readily noticeable to the naked eye, while others can only be identified using technology (e.g. a blood test). Stigma is the sociocultural devaluation of a way of being (see Pescosolido and Martin, 2015). Devaluing a way of being involves a negative appraisal: judging a way of being as inferior relative to other ways of being. This appraisal typically involves a label and a negative stereotype or set of associations with a way of being (see Link and Phelan, 2001). This devaluation is sociocultural, in the sense that it is a “set of cognitive elements,” such as beliefs and values, that are “learned and/or shared across people” through two-way processes of producing objects and representations and internalizing their meaning (Lizardo, 2023: 293–294).

Stigmatization is the process of decreasing the sociocultural valuation of a way of being. Likewise, destigmatization is the process of increasing the sociocultural valuation of a stigmatized way of being. Though stigma is associated with negative effects, such as discrimination and status loss, the harmful consequences of stigma should be distinguished from the devaluation itself (Andersen et al., 2022; Deacon, 2006). Similarly, destigmatization efforts should be distinguished from efforts to protect people with a stigmatized way of being from the consequences of that stigma. We use the term stigma mitigation to refer to efforts to prevent or reduce the harmful effects of stigma on the members of a stigmatized group. Destigmatization changes the valuation of a way of being, while stigma mitigation changes the conditions of people who are stigmatized without reducing the stigma itself. While stigma mitigation and destigmatization are not unrelated, devaluation is not directly amended through mitigation efforts.

We conceptualize medicalization as the process by which a way of being becomes defined and treated as a physical or mental health problem (see Conrad, 2007). Medicalization thus can involve a shift in beliefs about a way of being (i.e. an increase in the number of people who believe a way of being is a treatable disease) or a shift in the way that people act in relation to that way of being (i.e. an increase in the number of people with that way of being who receive treatment). Defining a way of being as a health problem necessitates viewing it negatively; it must be seen as undesirable or dangerous, as a threat to health, well-being, or longevity. While medicalization can bolster the imperative for and perceived feasibility of treating or preventing a way of being, especially in comparison to other medicalized ways of being, this does not constitute destigmatization. Medicalizing a way of being can grant access to resources, such as treatment coverage, and it can legitimate claims of the “sick role.” But gaining access to such material or symbolic resources is not the same as raising the sociocultural value of the way of being (see Parsons, 1951). For a simple example, having leukemia is a way of being that is strongly medicalized, but people do not want to have leukemia.

The problem of undermedicalization is different than the problem of stigma and, as mentioned above, medicalizing a way of being does not destigmatize it. Avoiding a diagnosis or treatment is not itself stigma. Healthcare avoidance is a problem of undermedicalization that may be caused by stigma, but it is not itself stigma. Similarly, efforts to increase treatment seeking behaviors or increase treatment adherence are not themselves destigmatization efforts; they are medicalization efforts. Even structural efforts, such as policy interventions, that ensure access to treatment for a specific way of being should be understood as medicalization rather than destigmatization. In other words, working to make a way of being seen as “like any other treatable disease” is medicalizing, not destigmatizing, even though it may increase its “standing” as a medical problem and the material resources devoted to its prevention and treatment.

Before proceeding, we would like to clarify a few possible points of confusion. We recognize that there are many different interventions that may improve the well-being of stigmatized groups. Even though medicalization is not destigmatizing, medicalization efforts can alleviate certain forms of suffering and, in some cases, may mitigate the harmful effects of stigma. Similarly, stigma mitigation can have a meaningful impact on stigmatized groups; for example, efforts to prevent discrimination can improve the opportunities of stigmatized groups without themselves directly increasing the sociocultural valuation of the stigmatized way of being. In addition, stigma mitigation efforts can have a positive impact on the health outcomes of stigmatized groups. We also recognize that stigmatized groups sometimes seek out or advocate for both stigma mitigation and medicalization. We are not calling for the demedicalization of all stigmatized ways of being, nor are we calling for the end of stigma mitigation efforts. We are also not calling for the end of basic stigma research that enables medicalization or stigma mitigation rather than destigmatization. We are not demanding that all stigma researchers become anti-stigma activists. Basic research into stigma has a unique role to play in supporting destigmatization efforts, but such research is not activism.

By arguing for the demedicalization of basic stigma research, we are calling for two specific changes. First, we are calling for the differentiation of research that enables medicalization from research that enables destigmatization. Second, we are calling for the production of research that facilitates destigmatization rather than medicalization. We argue that medicalization is currently a higher priority in existing stigma research than destigmatization. We believe that a greater proportion of stigma research should focus on producing insights that can facilitate destigmatization.

How stigma research has been medicalized

How to demedicalize basic stigma research

Shifting the priorities of stigma research will not be an easy task. Over the past 20 years, stigma research has come to acknowledge the importance of inquiry into the structural sources of stigma, as evidenced by the incorporation of such factors into several influential theoretical frameworks (Pescosolido and Martin, 2015; Stangl et al., 2019). However, our call to demedicalize stigma research goes beyond existing calls to prioritize the structural sources of stigma or to use multilevel frameworks and interventions (Cook et al., 2014; Parker and Aggleton, 2003; Stangl et al., 2019). After all, even if researchers are using multilevel frameworks, studying stigma as a problem of undertreatment that is solved by medicalization will not yield insights into the processes that produce and maintain the sociocultural devaluation of stigmatized ways of being.

The first step toward demedicalizing stigma research is simply recognizing the distinctions between the problems of stigma and undertreatment and between the approaches of destigmatization, medicalization, and stigma mitigation. All researchers and journal reviewers should be mindful of these distinctions and avoid portraying medicalization, destigmatization, and stigma mitigation as interchangeable goals. It is noteworthy that although there have been several influential review articles attempting to standardize the meanings of various concepts used in stigma research, terms such as “destigmatization,” “stigma reduction,” etc., are not defined in such reviews (Fox et al., 2018; Pescosolido and Martin, 2015). To address the issues we have raised, researchers will need to think as carefully about conceptualizing and operationalizing destigmatization as they have about stigma. Our concept of stigma mitigation is meant to acknowledge that many researchers work toward ameliorating the effects of stigma and understand their central goal as in opposition to stigma, even though these efforts do not intervene on devaluation itself. As others have urged, we believe researchers should be careful about what they label as stigma to avoid collapsing the harmful effects of stigma with stigma itself (Andersen et al., 2022; Deacon, 2006). Even though stigma may lead to undertreatment, these are separate problems.

Another key part of demedicalizing stigma research is pursuing research projects that enable destigmatization rather than medicalization. For example, we need more research that investigates structural or public stigma as an outcome, rather than as the predictor of other outcomes. We need theories and models of sociocultural devaluation, where public stigma is at the end of the causal diagram, rather than at the beginning of a causal stream that ends with outcomes related to treatment and diagnosis. In other words, more sociological research into the sociocultural mechanisms that shape stigma at the population level is needed. Yet psychological research also has an important role to play here, if the cultural nature of stigma is taken seriously.

Fortunately, in the last 10 years cultural sociologists have been working diligently to produce analytical frameworks for studying culture that incorporate insights from cognitive science. The social theorist Omar Lizardo distinguishes between “public culture,” culture externalized in the form of concrete things and representations in the world (discourses, frames, symbols, objects, etc.), and “personal culture,” culture internalized at the individual level through processes of enculturation (Lizardo, 2017). Personal culture can be further subdivided into declarative culture (e.g. beliefs, values) and nondeclarative culture (e.g. habits, associations). In this vein, Lizardo defines something as cultural if it constitutes a set of cognitive elements (and the relations among them) that are shared by an analytically determined group of people (Lizardo, 2023: 294). In other words, studying stigma as sociocultural devaluation requires tracing how negative representations and devaluing institutional arrangements enculturate large groups of people such that a particular way of being becomes widely understood and evaluated as bad, wrong, harmful, and/or undesirable. Sociocultural devaluation ultimately inheres within the minds of human beings, but combating it requires understanding the links between public culture and personal culture that sustain and reproduce it. Basic stigma research that approaches stigma as cultural in this analytic way is crucial for the development of more effective destigmatization efforts.

As an example, we have hypothesized elsewhere that the proliferation of medical claims and ideas about a given way of being may act as a mechanism of sociocultural devaluation (Fox et al., 2023). Medical and mental health claims that mark a given way of being as a medical problem in need of treatment or prevention (public culture) may become internalized in the broader public in the form of beliefs that a given way of being is a harmful threat (declarative personal culture). Alternatively, the constant depiction of a way of being as a health problem may train individuals to adopt a routinized medical orientation to members of the stigmatized group, such that they see group members as a disease first, and a person second (nondeclarative personal culture). We have argued that the cultural proliferation of medical and health claims about fatness may drive weight stigma through these kinds of processes. That is, we hypothesize that the stigmatization of fatness is reproduced through portrayals of fatness as a threat to individuals and populations and by portrayals of weight loss as the only appropriate response to fat bodies. Testing such hypotheses ultimately involves studying the relationships between medicalizing public culture, medicalized personal culture, and devaluing beliefs and attitudes.

Finally, demedicalizing stigma research involves letting go of the assumption that knowledge about the causes of health and illness can serve as a backbone for stigma research. The field of stigma research has truly only begun to grapple with the implications of the failure of attribution theory-based approaches to destigmatization. For a time, attribution theory served as a “paradigm” for stigma research in the Kuhnian sense—a unifying theoretical framework that could define research problems and reliably yield results (Kuhn, 2012). For decades, stigma research has used attribution theory-based frameworks to explain how stigma flowed back and forth between public culture and personal culture, and educational interventions and anti-stigma campaigns have been designed accordingly. Despite its lackluster results, it is likely that attribution theory-based approaches will continue to shape stigma research and interventions until there are new theoretical approaches that can supplant them. As such, new theoretical approaches are urgently needed.

Constructing new theoretical approaches to understand the sociocultural devaluation of stigmatized ways of being will likely involve generating new hypotheses by drawing on ideas outside the fields of medicine or mental health. We recommend that stigma researchers look to scholarship on oppression and how to combat it, what Collins (2019) refers to as “resistant knowledge projects.” Scholarship from fields such as disability studies, mad studies, and fat studies may serve as important starting points for developing new hypotheses about the way that sociocultural devaluation is produced and reproduced. As suggested above, we also believe that sociological theorizing about culture, valuation, oppression, and status have much to offer the study of stigma. Similarly, because the production and consumption of media is central to the enculturation processes involved in stigma, approaches from the fields of communication and media studies may prove particularly helpful as well.

Discussion

We have argued that stigma research has prioritized enabling medicalization over enabling destigmatization. That is, we have shown how the goal of increasing the rates of diagnosis and treatment for certain stigmatized ways of being labeled as physical or mental health conditions has been prioritized over the goal of combating their underlying sociocultural devaluation. We identified three manifestations of the medicalization of stigma research: medicalized impetus and justification, medicalized selection of outcomes, and medicalized theoretical assumptions. By narrowly portraying stigma as a problem of undertreatment, focusing on the harmful consequences of stigma rather than its underlying causes, and frequently relying on a theoretical approach which leaves the devaluation of stigmatized ways of being unchallenged, basic stigma research has produced insights most conducive to the development of medicalizing interventions rather than destigmatizing interventions.

In turn, we have suggested three ways to demedicalize stigma research. First, researchers need to distinguish between the problem of stigma and the problem of undermedicalization and begin portraying stigma mitigation and medicalization as goals that are fundamentally distinct from the goal of destigmatization. We see this as the first step that all stigma researchers should take. Second, we call for more research that studies stigma—sociocultural devaluation—as an outcome. Finally, stigma research should produce new theories of stigma as fundamentally cultural, such as theories that link public culture (specific stigmatizing discourses, practices, institutions, etc.) with personal culture (stigmatizing attitudes, beliefs, and associations).

In addition, more research needs to be done to examine and characterize the medicalization of basic stigma research. There are other ways that stigma research has been medicalized that we have not engaged with here (see Fox, 2024; Mercedes, 2025), and this phenomenon deserves to be studied systematically. Additionally, the relationship between medicalization and stigma, and the limitations of attribution theory, are better documented and understood in some areas of stigma research (e.g. mental illness stigma) than in others. Though we have drawn on examples across a range of stigmatized ways of being, and there is cross-cutting research questioning the idea that medicalization is destigmatizing (Arseniev-Koehler and Best, 2025; Best and Arseniev-Koehler, 2023), more research is needed to understand medicalization’s effects on stigma.

We recognize that both medicalization and stigma mitigation are often seen as more feasible ways to improve the lives of stigmatized groups. In addition, discussions of stigma may be perceived as distractions from the need for material change in the form of what we would refer to as stigma mitigation (e.g. discrimination protections, expanding treatment access). Yet, destigmatization will always be seen as less feasible if we do not understand what causes stigma and how to intervene on devaluation itself. In a world where we understand how to mitigate stigma better than we understand how to destigmatize, it is reasonable that some view discourse about stigma itself as a distraction. This is why basic stigma research that enables destigmatization is so crucial; without it, the horizon of possibilities for improving the social conditions of stigmatized groups will always be limited.

Research that facilitates destigmatization is likely to have more relevance to destigmatization movements and less relevance to health professionals and the work of disease advocacy. Most work to combat the sociocultural devaluation of stigmatized ways of being will not be accomplished by experts carrying out intervention programs or top-down anti-stigma media campaigns. If we look at successful cases of destigmatization, we are forced to recognize that most effective destigmatization efforts have been carried out by activists and lay people pushing for change from the bottom up. As such, we concur with Corrigan that “the worth of our research lies with its ability to inform and arm advocates in their efforts to replace stigma with affirming attitudes and actions” (Corrigan, 2018: 124).