Abstract
At the center of the COVID-19 pandemic lies a ubiquitous feature of medicine. Medicine is permeated with ignorance. Seizing this moment to assess the current state of medical sociology, this article articulates a sociology of medical ignorance. We join insights from earlier medical sociological scholarship on uncertainty with emerging research in the sociology of ignorance to help make sense of the omnipresent but sometimes invisible dynamics related to the unknowns in medicine. Then we examine two streams of inquiry with a focus on uncertainty and ignorance—(1) research on the interconnections between technology, medical authority, and ignorance and (2) research on lay expertise within the context of ever-present uncertainties. For decades, and to good effect, medical sociologists have asked, “What does medicine know, and what are the consequences of such knowing?” Going forward, we encourage medical sociologists to examine the unknown in medicine and the consequences of not knowing.
By the end of January 2020, roughly 10,000 cases of COVID-19 had been reported in over 21 countries, including the first cases in the United States. In the ensuing days, weeks, and months, nearly every aspect of daily life was transformed in an effort to halt the spread of the pandemic. But mitigation efforts have been crafted in the context of many unknowns. In the United States, these mitigation efforts have failed considerably. As we write this, more than a year after the first U.S. cases, American deaths have exceeded 550,000, and no part of the country has gone unscathed.
One of the most striking aspects of this pandemic is the flood of ignorance at its core. When it comes to the novel coronavirus, unknowns are legion. Where did SARS-CoV-2 originate? How transmittable is the virus? How deadly is COVID-19? Why does the disease display such variation in symptoms and severity? Why are certain groups more vulnerable to the virus? How quickly is the virus mutating, and what are the resulting consequences? And on and on. There are also unknowns about the spread and our response to the pandemic. How many people are infected? How many have died? How effective are masks? Under what conditions can we resume certain activities? When will most Americans be vaccinated, and how effective will vaccination be? And on and on. The pandemic holds a mirror up to the limits of our knowledge and vulnerabilities this ignorance creates.
Some of the uncertainty is due to the newness of SARS-CoV-2 virus in tandem with the speed and scope of the pandemic. However, this is compounded by the current U.S. cultural and political climate in which the virus has landed. Noting the rise of “fake news” and “alternative facts,” numerous commentators argue that the United States is undergoing a flowering of anti-intellectualism and scientific distrust (e.g., Nichols 2017). This has led to declarations of a post-truth era and the death of expertise. However, expertise is not quite dead yet. Gil Eyal (2019), like sociologists before him (e.g., Beck 1992), describes the resulting tensions between our unprecedented reliance on science and our increased skepticism toward it. At a time when Americans are most apt to question expertise, they are utterly dependent on it. Of course, this contradiction transcends the pandemic. Opposition to medical expertise is not new, nor is our cultural affinity for placing great hope in medical–technological solutions for our most complicated social problems. Rampant medicalization and hyped medical technologies exist alongside widespread medication noncompliance and the antivaccination movement.
Ignorance surrounding the COVID-19 pandemic offers a valuable lens through which to assess the past two decades of medical sociological research. Amid the largest health crisis of our time, this article takes stock of the resources at hand to analyze this current moment of deep uncertainty. The pandemic has confirmed, in dramatic fashion, central insights of medical sociology related to the social determinants of health (Williams and Cooper 2020; Yellow Horse, Parkhurst, and Huyser 2020). But the subfield has a less obvious set of tools on hand to make sense of the dynamics of ignorance, not just at the core of the pandemic but ever present in medicine. Ignorance has always haunted medicine, in the clinical encounter, in the construction of diseases and diagnoses, and in the health-related conflicts and struggles. Holding fast to this lesson from COVID-19, we seek to center ignorance in future analyses of health, illness, and medicine.
In this article, we begin to develop a conceptual toolkit to make sense of ignorance as a central facet of medicine. Despite its scattered character, medical sociology possesses insights that can serve as a foundation for a sociology of medical ignorance. A previous generation of medical sociologists asserted the prominent place of uncertainty, viewing medical practice as fundamentally oriented around negotiations with the unknown. We reassert the focus on uncertainty, drawing on this past reservoir of insight and inspiration. However, what we propose in this article is no mere reclamation project. We expand on this tradition by drawing on the emergent field of the sociology of ignorance. This loose body of research holds up ignorance—often seen as an empty negative or lack—as an object of analysis in its own right and provides a theoretical framework to think through the diverse kinds of medical ignorance and their implications.
After laying out this framework, we explore the theme of ignorance in two existing bodies of research in medical sociology over the past 20 years: medical technology and lay expertise. Although some of the research in these two areas addresses ignorance explicitly, more commonly, ignorance is present but not explicitly theorized. Our discussion brings ignorance to the forefront to demonstrate what is gained when it is made an explicit object of analysis. First, we explore two dynamics related to ignorance present in sociological research on medicine and technology. Technology buttresses medicine’s cultural authority by managing medical ignorance. But in doing so, technology simultaneously produces some distinct forms of ignorance. Next, we discuss research on lay expertise, focusing on its essential relationship to medical ignorance. Medicine privileges certain ways of knowing, the results of which produce oversights that lay actors must negotiate, sometimes independently of medical experts, sometimes in opposition, and sometimes in cooperation.
Pressing on into the pandemic and beyond, we encourage medical sociologists to systematically investigate what is unknown and the consequences of not knowing with the same level of commitment they have long brought to examining what medicine knows and the consequences of such knowing. Among other things, this demands theorizing the myriad ways medical ignorance contributes to and reinforces structural inequalities. To lay out this agenda more concretely, we offer some initial guideposts to orient the way forward.
Background
Toward a Sociology of Medical Ignorance
In 1980, the eminent medical sociologist, Renée Fox, gave a speech reflecting on her then 30-year career. 1 Fox emphasized that the central theme of her research was medical uncertainty. She credited her teacher, Talcott Parsons, for steering her toward uncertainty as a topic of critical importance in medicine. Fox (1980:4) dedicated her career to what she called the “microcosmic inquiries into medical uncertainty.”
Others followed Fox’s lead, elevating uncertainty to a place of prominence in medical sociology. Much of this research focused on uncertainty in the clinical encounter and its implications for medical education. Fox (1957:208) examined how aspiring doctors must be “trained for uncertainty” and learn to manage three sources of uncertainty—that which “results from incomplete or imperfect mastery of available knowledge,” that which stems from “limitations of current knowledge,” and that which originates from trying to distinguish between the two in a particular situation. Light (1979) extended Fox’s typology by parsing other sources of medical uncertainty related to treatment, diagnoses, and client response. Bosk (1979) examined medical errors, giving detailed accounts of the missteps made by surgical residents, noting their inevitability born of uncertainty. Although this influential body of research continues to be read today, the topic of medical uncertainty itself moved to the subfield’s periphery in the 1980s.
As COVID-19 starkly reveals, negotiations with the unknown touch all facets of health and medicine. Medical sociologists need a robust conceptual toolkit that expands previous research on medical uncertainty and centers medical ignorance. In the last decade, a diverse and interdisciplinary body of research, operating under a variety of monikers—”sociology of nonknowledge,” “ignorance studies,” “agnotology,” and the “sociology of ignorance”—has begun building this toolkit. The sociology of ignorance begins from the premise that ignorance is not a mere void or absence but has a presence and operates according to dynamics distinct from knowledge production (Gross and McGoey 2015). Furthermore, ignorance is omnipresent; when weighing that which we know versus that which we do not, the scale tips decidedly toward the latter. Thus, ignorance is not merely a respectable object of scholarly focus; it is vital to understanding social dynamics.
Despite its nascent character, the sociology of ignorance has yielded insights relevant to a future sociology of medical ignorance. Here we focus on three of these insights.
Ignorance comes in many varieties
There are different kinds of ignorance. Much of the initial work in the sociology of ignorance has been in classifying types of ignorance along several relevant dimensions. These dimensions include recognition (ignorance that is known vs. ignorance that is unknown), chronicity (temporary ignorance vs. long-standing and even permanent ignorance), intentionality (ignorance that is unintended and involuntary vs. that which is motivated and strategic), and functionality (ignorance that is productive vs. dysfunctional) (Croissant 2014; Gross 2007). From these distinctions, scholars have catalogued an array of ignorances (e.g., selective ignorance, forbidden knowledge, strategic ignorance, undone science, etc.), all of which have their correlates in health and medicine. Uncertainty, the label under which medical sociology has subsumed discussions of ignorance, achieves a specificity under this taxonomic project. A broad and colloquial use is supplanted by viewing uncertainty as a particular kind of ignorance—a known unknown, generally emergent in decision-making, that carries with it an assumption of eventual knowing and the perception that it is manageable.2
Once classified, researchers can attend to the distinct dynamics that follow from the diverse kinds of ignorance. An obvious type of medical ignorance is known unknowns, gaps in the knowledge base of which medical professionals are aware. For example, officials grappling with COVID-19 face a considerable amount of known ignorance. Many of these known unknowns result from the discordant temporality between the speed of the pandemic and the slower pace of medical science. Some of this ignorance will resolve over time, but in the meantime, officials must make decisions with limited knowledge on hand, resulting in inevitable missteps. Not just a feature of pandemic medicine, this time-lag issue is fundamental in medicine, where an ever-evolving research base constantly meets urgency in the clinical encounter.
In this article, we begin the task of classifying some of the forms of medical ignorance, but others depend on future elaboration and discovery. Our aim is not to provide an exhaustive taxonomy but to signal the analytical benefits of parsing out the different forms that medical ignorance can assume.
Ignorance can be productive
Commonsense notions of ignorance treat it as a negative, a deficit to be overcome. Research in the sociology of ignorance challenges this convention by demonstrating the productive uses to which ignorance can be put. Science, including biomedicine, depends on ignorance. Inquiry is spurred by ignorance; known unknowns propel research, yield new findings, and reveal further questions for exploration. Additionally, knowledge gaps can serve as catalysts for laypeople to act and insist the gaps be filled by either scientists or alternative forms of knowledge.
Counterintuitively, ignorance can be politically and economically valuable. In some cases, actors cultivate “strategic ignorance,” mobilizing unknowns “to command resources, deny liability in the aftermath of disaster, and to assert expert control in the face of both foreseeable and unpredictable outcomes” (McGoey 2012:555). In health and medicine, strategic ignorance manifests most commonly in the framing of medical controversies. Tobacco companies sow doubt about the carcinogenic effect of cigarettes by spreading misinformation and intentional ignorance (Proctor 1995). Pharmaceutical companies deploy strategic ignorance to manage the fallout from medical disasters (McGoey 2009). Indeed, professional authority depends, to some extent, on strategic ignorance. Medical professions maintain their authority through an asymmetry of knowledge, keeping the lay public ignorant of their specialized knowledge. Finally, strategic ignorance was dismayingly evident in President Trump’s avowed reluctance to install a robust federal testing program for COVID-19 lest it hurt his polling numbers and electoral chances.
Ignorance is socially constructed and contested
Suggested in research of ignorance’s productive effects is an awareness that ignorance, like knowledge, is socially constructed (Smithson 1985). This construction operates on two levels. First, social arrangements produce ignorance via mechanisms like obfuscation, forgetting, the creation of blind spots, and intentional manipulation. Even the most valorized techniques of knowledge production, like randomized controlled trials (RCTs), produce systematic forms of ignorance (see the following).
Second, the interpretation of ignorance is socially constructed through framing processes and contentious struggle. Whether ignorance is interpreted as permanent or temporary, willful or unintentional, positive or negative, and so on is not self-evident but dependent on how it is framed by particular actors. For medical professionals, whose authority rests on claims to possessing specialized knowledge (Freidson 2001), the framing of ignorance carries large stakes. Known unknowns pose problems for medical authority when they abound. Experts, in turn, try to shape public perceptions through the “collective management of ignorance” (Whooley 2019:15). For example, they might work to frame the public perception of their ignorance as merely temporary. Such ignorance management is fundamental to securing professional authority and claims to expertise.
Although often relegated to the background, the last 20 years of medical sociological research reveals ignorance in all facets of health and medicine. Macrolevel analyses of trends like medicalization (Conrad 2007) or biomedicalization (Clarke et al. 2003) reveal the simultaneous promotion of certain explanations and the elision of others, namely, the social. At the meso level, research underscores that medical specialties have knowledge gaps that require negotiation to protect expertise. For example, over its entire existence, psychiatry has been roiled by recurrent legitimacy crises stemming from its persistent ignorance. In response, generation after generation of reformers have staved off professional calamity by reinventing the profession, introducing new paradigms that frame mental distress as “unknown but knowable” rather than inherently “unknowable” (Whooley 2019).
Instances of mesolevel professional wrangling with ignorance are not limited to psychiatry. Additional examples include rheumatology’s creation of the fibromyalgia syndrome diagnosis to harness its ignorance of pain (Barker 2005), the application of the paradoxical diagnosis medical unexplained symptoms (MUS) to contain symptoms that are otherwise scattered in the unknown (Nettleton 2006), and “treatment protocols” for intersex individuals, which can only be described as a wasteland of ignorance (Davis 2015). Finally, at the micro level, ignorance and uncertainty fundamentally shape the clinical encounter. Medical professionals generally downplay ignorance to overcome potential paralysis in decision-making and uphold their authority. With patients, they negotiate uncertainty, for example, in risk assessment (Littlejohn and Kimport 2017), diagnoses (Rafalovich 2005), and test results (Pilnick and Zayts 2014).
When one looks for ignorance in medical sociological research, one begins to see it everywhere. In this article, we concentrate on two areas of research from the past 20 years in which ignorance factors significantly—research on medical technology and research on lay expertise. By illuminating the insights regarding ignorance in these areas, we lay out a vision for a sociology of medical ignorance. Reading medical sociology through the lens of ignorance, this vision stresses how medical experts manage ignorance, how medicine produces certain kinds of ignorance, and how actors—lay and medical—struggle over ignorance as part of the larger politics of medical knowledge.
Before proceeding, we mention two caveats. First, our discussion of the research on medical technology and lay expertise focuses on ignorance and uncertainty. We do not provide an exhaustive account of the scholarship that falls within these areas. Nor do these two areas capture the breadth of medical sociology relevant to analytic mapping of ignorance. We could have selected other areas, but these are the bodies of research that we know best. Second, our use of COVID-related examples is preliminary. We evoke examples from the pandemic to illuminate dynamics in the literature and to signal possible future directions. But, like everyone, we too are mired in the ignorance surrounding COVID-19. We leave the necessary empirical research to the future.
Medicine, Technology, And Ignorance
Technology has always been at the heart of the medical enterprise. The consolidation of the modern medical profession in the early twentieth century drew on the new laboratory technologies for authority (Starr 1982). Since the mid-1980s, medicine has witnessed dramatic changes driven by technological innovations, a process that medical sociologists deem biomedicalization (Clarke et al. 2003). Within biomedicalization are narrower technology-driven processes, like geneticization (Arribas-Ayllon 2016) and pharmaceuticalization (Bell and Figert 2012). Technology has transformed the medical sciences, reshaped medical practices, and reconfigured our conceptions of health, illness, and the human body (Casper and Morrison 2010). Associated with “mechanical objectivity” (Daston and Galison 2010:4), technology confers cultural authority on medicine that enables the translation of complex social issues into medical problems with technoscientific fixes.
In this section, we explore the ignorance-related effects of medical technology. We adopt a broad view of medical technology that encompasses both high technology—imaging technologies (functional MRI, etc.), genetic technologies (CRISSPR, etc.), pharmaceuticals, and medical devices—and mundane low technology—diagnostic and informational technologies often related to paperwork like standardized protocols, diagnostic screeners, and electronic health records. We argue that the optimism and forward-looking character of medical technology plays a central role in masking medical uncertainty and ignorance. But technology does not only help manage medical ignorance; it produces new varieties of it.
Technology and the Management of Medical Ignorance
Popular understandings of medical technology efface medical ignorance and help medical professionals manage it. This elision of ignorance is evident in genetics and neuroscience, for instance. The image of the gene, made possible by advances in the sequencing of the human genome, has become “a cultural icon” (Nelkin and Lindee 2004:2) that carries the promise of targeted, personalized gene therapies. Functional MRI is perceived as a “technology of truth” (Joyce 2008:3) that can unlock the mysteries of the mind; its tidy images obscure the persistent unknowns regarding neurological mechanisms. Closer scrutiny of both genetic science and neuroscience reveals more uncertainty, complexity, and interpretative work than appreciated (Racine et al. 2010). Still, bolstered by enthusiastic media coverage (Racine et al. 2010), visions of medicine’s bright future overstate the reach and efficacy of its technological arsenal and reinforce its cultural authority.
Technological innovations need not be successful to manage ignorance. Medical authority can be secured on the mere promise of technology even if that promise is never realized. A hype/disappointment cycle accompanies many technological innovations (Borup et al. 2006; Brown and Michael 2003). Innovations are introduced with hype, promising (sometimes grandiose) solutions. Based on this hype, resources are allocated to reforming medical fields around the new technologies. Present ignorance is reframed as temporary via construction of an imagined future of knowing. The payoff of new technologies, however, often proves to be more pedestrian than anticipated due to unrealistic expectations and the challenges of translating innovation into practice. Nevertheless, even an unsuccessful technology can have weighty effects. Promise alone justifies investment that transforms medicine and generates cultural authority. The hype/disappointment cycle has been observed for specific technologies like pharmacogenetics (Hedgecoe and Martin 2003), treatment regimes like personalized medicine (Tutton 2012), and entire research fields like genetics and neuroscience.
As the hype/disappointment cycle reveals, medical technology wields significant power in shaping perceptions of reality. It yields new ways to see medical problems and creates new forms of risks, new ways to screen, new kinds of diseases, and new classes of patients. For example, feminist scholarship has demonstrated how technologies (e.g., fetal ultrasound) have transformed pregnancy into a technology-saturated event (Blizzard 2007; Taylor 2008; Thomas, Roberts, and Griffiths 2017). These technologies extend the medical gaze into the pregnant body and conceptualize the fetus as a distinct patient (Casper 1998). They also obscure medical ignorance, conveying a precision that obfuscates uncertainty and bolsters the scientific bona fides of reproductive medicine. An analogous process has been observed in environmental health. Here, technology homes in on the body and (re)defines the environment to exclude social factors (Lappé 2016; Shostak 2013). The ignorance and uncertainty born of the dynamic and multicausal reality of environmental health is masked and replaced by a narrower definition of the situation in which these issues are tractable to technological solutions.
Given the effects on ignorance, technology has been a source of optimism in our collective wrestling with the pandemic uncertainty. Much of the discussion of COVID-19 has focused on technological solutions. Witness the focus on ventilators as the country geared up for the coming epidemic or the rapid pivot to drug cures. President Trump’s controversial promotion of hydroxychloroquine offers a textbook example of the hype/disappointment cycle. And as the sheen wore off potential treatments, attention drifted toward vaccine salvation. This uncritical turn to technology for comfort amid deep uncertainty reflects technology’s power to manage medical ignorance.
Technology and the Production of Ignorance
Technology’s relationship with medical ignorance is complicated in that it simultaneously helps manage some ignorances while systematically creating others. Ignorance shares a root with ignore; what we pay attention to as relevant and what we ignore is socially structured (Zerubavel 2015). Implicit in the critiques of biomedicalization is the idea that it produces a certain kind of ignorance—that of the social. By discounting social factors, medical technoscience ignores the complexity, uncertainty, and even ignorance of health issues. This might help manage public perceptions surrounding medical ignorance, but it can lead us further away from understanding these problems.
Another means by which technology produces ignorance is by blackboxing the decisions that shape the creation of technology. This ignorance is rooted in forgetting—once embodied in a technological device, memories of the choices that went into building it are lost—and obscurantism—the user cannot see the hidden assumptions built within the device. For example, Braun (2014) reveals the racial project embodied in the spirometer, a device that measures the volume of air in the lungs. Developers, misperceiving a racial difference in lung capacity, created a “race correction” for the readings. When a user enters a patient’s racial information, the spirometer automatically adjusts. Through blackboxing, the spirometer buries the racialized assumptions within it, which users unwittingly perpetuate. Similar dynamics are evident in racial biases buried within medical algorithms (Benjamin 2019). Obermeyer et al. (2019) examined an algorithm aimed at reducing health care costs. The algorithm uses “cost of care” as a proxy for health needs. Because black individuals spend less on health care because of economic disadvantage, their risk scores are lower than their actual health. Rendered invisible, this operationalization produces distorted knowledge under the guise of precision.
Medical technology’s production of ignorance occurs unevenly, often in tandem with larger systems of inequality. Sociologists have pointed out the extent to which technoscientific medicine ignores, misconstrues, and manipulates female, queer, and disabled bodies (Barker 2005; Davis 2015; Thomas 2012). Related, medical research tends to essentialize race, ignoring its socially constructed character (Epstein 2007; Hatch 2016). Thus, technologies can produce ignorance via gendered, ableist, and racialized assumptions built into them, which, in turn, foster broader ignorance about social origins of the categories of differences and the systems of oppression they uphold.
Even the most revered research techniques can look different when approached from the standpoint of ignorance. Take RCTs, the gold standard of medical research by which many medical technologies (e.g., pharmaceuticals) are validated. Double-blind RCTs use ignorance intentionally (Gross and McGoey 2015); placebo effects are controlled by keeping researchers and study participants in a state of ignorance as to who receives the treatment. Beyond this useful ignorance, however, RCTs also create problematic unknowns. For example, the design of RCTs makes it difficult to detect adverse drug reactions (ADRs; Light and Lexchin 2021). RCTs are too short in duration to record evidence of many ADRs and use sampling procedures that exclude those most vulnerable to ADRs. Of course, all research methodologies have their limitations. The problem with RCTs, however, compound when the ignorance produced therein travels beyond the lab. Their lauded status confers legitimacy on drugs brought to market. They also provide cover to pharmaceutical companies should ADRs come to light, supplying them with “ignorance alibis” (e.g., “How could we have known?”; McGoey 2019:12) by which they deflect responsibility for drug failures. Methodological blind spots are thus transformed into strategic ignorance, manipulated by actors for economic gain.
Finally, research on technology in practice reveals how technology intended to reduce uncertainty can actually foster it in the medical encounter. Technologies that appear straightforward in theory—or in the lab or in media accounts—become anything but in practice (Menchik 2017). These dynamics are evident in the implementation of information technologies related to paperwork. Evidence-based medicine (EBM), for example, seeks to reduce clinical error by standardizing medical practice (Timmermans and Berg 2003), mainly through mundane technologies that involve “information infrastructures” (Bowker and Star 1999:33). However, abstract protocols cannot always accommodate the messy realities of the clinical encounter (shuster 2016). Some medical professionals resist EBM protocols and information technologies, developing workarounds to minimize their constraints on practice and physician discretion (Reich 2012; Whooley 2010). Moreover, technological innovations can create new clinical uncertainties that become justifications for new forms of expertise to manage these uncertainties, as is the case with genetic testing (Markens 2013).
Engaging medical technology through the lens of ignorance reveals a discordance between the popular image of technology as sources of objective transparent knowledge and the hidden ignorances that it can produce. The complex entanglements of technology, knowledge, ignorance, and power, touched on here, present fertile opportunities for research going forward.
Lay Expertise: Close Encounters With Medical Ignorance
The robust literature on lay expertise offers additional insights related to the dynamics of ignorance in medicine. By lay expertise, we mean the knowledge and know-how laypeople acquire about their health and medical concerns. The term is the outcome of a conceptual unfolding. From the sick role, to health beliefs, to lay knowledge, to lay expertise, each of these concepts are sociological attempts to account for lay responses to health problems in a changing world (Joyce and Jeske 2019; Williams 2014). Although there are thoughtful critiques of the term lay expertise (Collins and Evans 2002; Prior 2003), we bracket these to examine the forces at play when the knowledge and know-how of laypeople encounter medical expertise and its corresponding ignorance.
At the outset, comparing features of official and lay expertise is a useful heuristic for showcasing the socially constructed character of both types of knowing and not knowing. As ideal types, these modes of expertise are informed by different types of information, standards of evidence, methods of analysis, and priorities of action (Pols 2014; Prior 2003). Medicine maintains epistemological commitments that prioritizes standardization, quantification, abstraction, and generalization. These conventions make the essential work of biomedicine possible even as they produce systemic blind spots. Lay expertise, or what Collins and Evans (2002:238) labeled “experience-based expertise,” is said to favor concrete particulars over abstract universals, to rely more heavily on first-hand experience than instrument-generated abstractions, to consider lack of certainty an insufficient justification for action on the behalf of individuals or communities, and to focus on immediate rather than long-term outcomes (Williams and Popay 2002). Although the boundaries between official and lay expertise are porous, ever-shifting sites of collision and collaboration, these distinctions are useful for understanding the inevitable dance around and through ignorance when medicine and laypeople come together.
The dance is not only inevitable but also commonplace. As revealed in the aforementioned ideal-type features, medicine knows and does not know in particular ways. The same can be said of lay expertise. But medicine’s cultural authority warrants our heightened analytic focus given the outsized influence of its ignorance. Regardless of whether such ignorance is intentional or not, recognized or invisible, the impacts on the illness experience and in turn lay expertise are substantial. The relational dynamics between medical ignorance and the illness experience are not tangential to understanding lay expertise. They are foundational. Medical ignorance begets lay expertise.
In support of such a claim, we start with a key insight from the illness experience literature: Medicine displays an epistemic ignorance toward the lived experience of illness. For more than 50 years, medical sociologists have looked to first-person accounts of suffering with an eye toward understanding the meaning of illness in individuals’ lives (Charmaz 1991; Glaser and Strauss [1965] 2005). By focusing on lay knowledge as a window into the lived experience, this research reveals how illness transcends the meaning-making jurisdiction of medicine. Being ill is more than being a patient with a disease. Among other things, illness gives way to agentic efforts to make sense of, and adapt to, illness in the face of immediate and existential uncertainties (Brossard 2019; Faircloth et al. 2004). Such efforts are undertaken within intersectioning systems of power and inequality that influence meaning-making processes and the social distribution of adaptations and uncertainties (Garthwaite and Bambra 2017; Monaghan and Gabe 2015). In sum, the illness experience organically generates lay expertise that speaks to profound uncertainties that can never be meaningfully determined within the purview of medicine.
To be sure, illness is more than disease. But the experience of illness in late-modern societies is deeply steeped in medicine. Lay expertise is also constituted by sifting through and distilling official medical knowledge and ignorance. Pioneering work in this vein made clear that laypeople can engage with medical research and reveal its ignorances (Brown 1992; Epstein 1996). In recent decades, instances of lay expertise have emerged around countless health conditions, largely in response to the cultural expectations that laypeople become informed patient-consumers in tandem with the rise of the Internet and associated digital technologies (Clarke et al. 2003; Conrad 2005; Lupton and Jutel 2015). As laypeople seek to be informed, they frequently discover that a great deal of medical knowledge is far from definitive. Consequently, even a dogged search for medical clarity can turn up ambiguous answers about symptoms, diagnoses, treatment options, risks, and the like (Nettleton 2006; Whelan 2007). Parenthetically, the pursuit for definitive medical answers and solutions in the context of inherent unknowns is an undertheorized driver behind patient–consumer medicalization trends (Barker 2008; Ehrenreich 2018).
Both pillars of lay expertise addressed here—making sense of the experience of illness and making sense of illness in the context of medical knowledge/ignorance—have been transformed by digital developments of the last 30 years (Clarke et al. 2003). The spike in online searches for “COVID-19 symptoms” in early 2020 (Bento et al. 2020) is a recent data point in a well-studied trend: the Internet has become a primary source of health information (Madrigal and Escoffery 2019). The universe of digital health information is bewilderingly vast, varied, and ever changing. Although there are notable impacts of this evolving universe on the illness experience and lay expertise, of interest to us are the impacts related to medical ignorance. On this score, several overlapping matters emerge. First, the digitization of official medical knowledge in tandem with the ubiquity of mobile technologies has vastly expanded public access to medical research (Lupton 2017). Patients turn to medicine’s codified knowledge to overcome their own medical ignorance, but this also expands their knowledge of medicine’s uncertainties and omissions. Second, as the illness experience itself moved online, the Internet became more than an information vending machine. Once largely private and solitary, illness is increasingly a public and collective experience (Conrad, Bandini, and Vasquez 2016). Digitally based illness affiliation begets and reflects a brave new world of user-generated health content. There is considerable analytic value in understanding this brave new world as a lay response to medical ignorance.
In countless digital spaces, laypeople tackle medical ignorance in its many forms. They exchange practical advice, emotional support, and meaning-making templates with those who share their illness, thereby laying bare medicine’s epistemic ignorance of the illness experience (Conrad et al. 2016). They also help each other sort through medicine’s contradictions by offering up testimonials of their first-hand experiences with treatments, procedures, and outcomes (Foster 2016). Additionally, they synthesize their experiences and produce interpretations and remedies for their shared conditions that are distinct from those offered by medicine (Henwood and Marent 2019). The use of health apps and other digital technologies (e.g., self-tracking devices), along with health platforms like 23andMe, encourage and commodify lay expertise by inviting laity to be coproducers of new modes of medical knowing (Maturo and Moretti 2018; Saukko 2018). In sum, digitally generated lay expertise operates as a crucial resource for circumnavigating medicine’s unknowns at the same time that it produces new medical knowledges and practices.
The concept of connectivity has been put forth to account for the emboldened sense of certainty that often accompanies lay expertise, especially in a milieu of medical uncertainty. Connectivity describes a way of knowing about illness based on “an experiential connection to illness and a virtual connection to others who share that illness” (Barker and Galardi 2011:1353). Claims grounded in lived experience are validated and reinforced by digitally shared illness identities, experiences, and epistemologies. These obtain a high degree of felt certainty in encounters with medicine’s ignorance. Recall how RCTs produce ignorance regarding ADRs that pharmaceutical companies transform into strategic ignorance. Lay actors who have experienced often devastating ADRs to commonly prescribed antibiotics called fluoroquinolones have turned to YouTube to produce and circulate alternative regulatory messaging that counters the strategic ignorance of pharmaceutical companies and their FDA surrogates (Barker 2019). Lay expertise of this sort makes public the experience of suffering that hides behind medical ignorance. Similar cases concerning the politics of medical ignorance are characterized by digitally networked lay actors countering medical claims at odds with their shared lived experiences (Akrich 2010; Kempner and Bailey 2019; Nettleton 2006). The degree to which virtual affiliation intensifies and mobilizes lay expertise to challenge medicine’s ways of not knowing is difficult to overstate.
Because medicine commands extensive organizational and cultural power, lay actors often organize in social movements to counteract medical authority (Hess 2004). Social movements are sites of “cognitive praxis,” generating and advocating alternative forms of knowledge (Eyerman and Jamison 1991:3). Movements can address medical ignorance in different ways. Of relevance with regard to lay expertise are embodied health movements (EHMs), where activists use first-hand knowledge of their disease, disability, or illness experience to challenge the epistemological blinders of medical science (Brown et al. 2004). The publication of Our Body Ourselves by feminist health activists is a powerful example. So too is the disability rights movements’ critiques of the medical model. Like feminist activists, disability rights’ activists foreground medical ignorance as a generative force in the pathologization of people living with impairments (Thomas 2012). Other movements focus on drawing attention to “undone science” in medicine—potential areas of research that go unfunded or are ignored. By making undone science known, movements then exert pressure on researchers and funders to get it done (Frickel et al. 2009; Hess 2016). Whereas many of the aforementioned cases foreground antagonisms, movements and their lay experts also collaborate with medical professionals to coproduce knowledge in the face of medical ignorance (Epstein 1996; Rabeharisoa and Callon 2002). Indeed, another distinguishing feature of EHMs is that their activists rarely have the luxury of ignoring science and the immediacy of its ignorance.
However, lay expertise and EHMs have a complex relationship to ignorance. Just as medical expertise is based on particular ways of not knowing, so too is its lay counterpart. Lay actors produce their own forms of ignorance, foster doubt, and create an environment of uncertainty (Hess 2016; Kempner, Merz, and Bosk 2011). Highly visible concerns around childhood immunization are a case in point. Along with concerned parents, including those who maintain their children have experienced vaccine harm, a vast network of politically and financially motivated parties have been effective in sowing distrust about the safety and effectiveness of immunization (Johnson et al. 2020). Despite robust data that the benefits of childhood immunization vastly outweigh the risks, some parents remain uncertain.
Drawing on feminist critiques of neoliberalism, Reich (2016) explains how parents, especially mothers, prioritize protecting their child from unknown harms. Even for parents not steeped in conspiracy theories, data showing that vaccines are overwhelmingly safe does not mean that they are always safe, and even a small risk is too great for their child. Although problematic, this stance is understandable. Parents’ reservations about the trustworthiness of the pharmaceutical manufacturers of vaccines are also understandable (Light and Lexchin 2021). The concern surrounding antivaccination politics looms large in the COVID-19 pandemic, the mitigation of which partially depends on a successful rollout of vaccines. If they are rushed to market, haphazardly tested, and/or associated with naked profit, fears of the vaccine could outweigh fears of the virus.
The antivaccine case also has much to teach us about current lay claims that the seriousness of COVID-19 is being overstated. Like vaccine skepticism, contesting the novel coronavirus can be situated in Americans’ long-standing antigovernment, antiscience, and anti-intellectual sentiments. It is also a reflection of the polarized political climate. Proscience views have actually increased during the pandemic, but only among the Democratic leaning; likewise, support for social distancing and stay-at-home policies falls along partisan lines (Pew Research Center 2020). Mask opposition is itself a treatise on the political uses of medical ignorance. Like many medical controversies, contesting COVID-19 has both organic and manufactured origins, combining motivations both cynical and sincere. The challenge for researchers is how to parse these distinctions and conduct empirically robust scholarship while avoiding the pitfalls of relativism (Kempner 2020).
This is a delicate balance to strike. Medical sociologists have warned against lionizing lay expertise as a corrective to medicine’s deficiencies, just as they have warned against its trivialization. It might be conceptual overreach to call current COVID skeptics lay experts, but it would be ill advised to write them off as political dupes. Lay expertise may be wisdom or folly, but to discount it is folly for certain. Still, conflicts between official and lay experts cannot be resolved by any agreed-on formula for evaluating which side has better evidence or clearer reasoning. Rigorous studies are not likely to be persuasive to those directly impacted if findings contradict their first-hand experience, especially if there are concerns about vested interests. Importantly, there are benefits of engaging with the knowledge of concerned laypeople and expanding their input in decisions about which they feel passionately and which impact them directly. Such engagement, or coproduction, is as complex as it is necessary (Filipe, Renedo, and Marston 2017).
When we center ignorance, it becomes clear that although lay expertise is increasingly commonplace, it cannot be read as a uniform challenge to medicine’s cultural authority. Some lay expertise is an overt pushback to medical authority, but there are many cases where it pushes for greater access to medical procedures (Barker and Galardi 2011; Hilário 2019), diagnoses (Madden and Sim 2016), and medical accommodations (Jutel 2014). Lay expertise brings new knowledge and demands into medicine, but by and large, it seeks to harness and bolster rather than challenge medicine’s cultural authority by demanding that ignorance be addressed. This squares with observations about the continued authority of medicine and our highly medicalized society (Conrad 2007; Timmermans and Oh 2010). It also squares with the paradox that is lay expertise; namely, it is an expression of patient empowerment and a neoliberal dictate that we take responsibility for our own health as consumers. Both expressions belie inequalities (Komaromy et al. 2018). Both expressions also belie the ordinary character of medical uncertainty.
The illness experience evokes some uncertainties that, a priori, stand outside of medicine but for which laypeople routinely look to medicine for resolution. There, they discover and seek to resolve medicine’s uncertainties and ignorance, frequently with the aid of a matrix of digital affiliates. Lay expertise is a rejoinder to inevitable existential, experiential, and medical unknowns. The effort to resolve unknowns about illness and suffering is part of the human condition. The particular conditions under which such resolution is sought are sociohistorical outcomes with potent consequence. Charting these conditions and consequences stand at the very center of medical sociology.
Conclusion
Medical sociologists would be remiss if we did not respond to the urgency of the COVID-19 pandemic and evaluate our research priorities. We contend that the analysis of ignorance should be prioritized. The pandemic has rendered conspicuous what is less evident during settled periods—the extent to which ignorance saturates all of medicine, from the biomedical laboratory to the design of medical technologies, from the clinical encounter to collective politics of health and illness. An ever-present feature of medicine, ignorance should be an ever-present focus for medical sociology.
Going forward, we propose four guideposts to orient an agenda for a sociology of medical ignorance. First, building on the classificatory work in the sociology of ignorance, we propose a parallel effort in categorizing medical ignorance. Medical sociologists should move beyond colloquial uses of ignorance and uncertainty and do the heavier conceptual lifting of parsing distinct types of medical unknowns. The payoff would not be merely taxonomic. It would enable further research that specifies how different kinds of ignorance are driven by different factors, have different consequences, and thus require different responses. We have made gestures to this categorization above, delineating medicine’s versions of epistemic ignorance, undone science, strategic ignorance, and discussing its known unknowns, its blind spots, and black boxes. But far more work is needed.
Second, existing research on medical ignorance or uncertainty tends to confine the analyses to a certain level (macro, meso, or micro), case, or organizational site. However, future research should also foreground “ignorance pathways” (McGoey 2019:167–68) by tracing how ignorance travels, accumulates, or dissipates across different contexts and scales. For example, we envision research that begins with illuminating ignorance in the development of a medical technology and then follows it through to the use of the technology and the ways in which the ignorance is negotiated in clinical encounters. Or researchers could trace how the lived experience of a vast swath of human distress moves through and is processed by the world of medicine. Such research would illuminate the mechanisms of transmission from abstract ignorance into concrete uncertainty. Or perhaps future research could highlight how one kind of ignorance (say, undone science) morphs into another kind altogether (say, strategic ignorance) when it traverses contexts. Still other research might attend to how multiple kinds of ignorance interacting within the same context produce distinct outcomes. Regardless of the specific form this research takes, tracing ignorance pathways would unearth the multiple, intersecting networks of medical ignorance.
Third, a future sociology of medical ignorance must examine the links between medical ignorance and structural systems of inequalities. The negative effects of medical ignorance are not equally distributed. They fall disproportionately on communities that are disadvantaged, in particular, women, the poor, gender and sexual minorities, racial-ethnic minorities, and people with disabilities. Scholars have noted the ways in which these systems of oppression are upheld and reinforced by epistemologies of ignorance, willful and intentional unknowing, and misrecognition (Mills 1997; Tuana 2004). Medicine often contributes to this ignorance by misspecifying the sources of difference. It reifies and naturalizes difference by locating it in the body, in biology, rather than recognizing its socially constructed character and its entanglements with power. This cultivated misapprehension, evasion, and self-deception perpetuates these structural inequalities by supplying them with a scientific gloss and a “natural” grounding. Modern medicine carries within it the legacies of this oppression (Ehrenreich and English 1978; Washington 2008). Unpacking how oppression is institutionalized in medicine requires an account of the role of ignorance, forgetting, and denial. The stakes are nothing short of (the unequal distribution of) life and death.
Finally, a sociology of medical ignorance must be pursued with reflexivity. When building a sociology of medical ignorance, medical sociologists must grapple with our own. What do our research conventions and epistemological assumptions allow us to see and not see? As much as possible, we must strive to make known and acknowledge our blind spots. All research has its limits and vexing ignorance. No area of medical sociology is immune. Indeed, our call to center ignorance is partially motivated by pandemic-induced reflections on our own research, which explicitly take on ignorance and uncertainty (Barker 2005; Whooley 2019). We were drawn to perhaps low-hanging cases of obvious uncertainty and ignorance precisely because they offered lens into the world of the medical unknowns. However, exploring ignorance through such messy cases—fibromyalgia and psychiatry—can foster the impression that the rest of medicine is tidy and medical ignorance is aberrational. Learning from these ventures, we suggest the analytic benefits of examining cases where uncertainty is less obviously on display to better speak to its pervasiveness.
For decades, and to good effect, medical sociologists have asked: What does medicine know, and what are the consequences of such knowing? There is a great need for medical sociologists to systematically examine what is unknown and the consequences of not knowing. Uncertainty and ignorance are close conceptual companions of knowledge. And yet, compared to medical knowledge, medical unknowns are a much vaster universe. There is a great need to chart this universe. This article has explored some conceptual tools to help us begin this exploration. Going forward, as we (hopefully) emerge from the pandemic, we cannot lose sight of its hard-won lessons of the role of ignorance and uncertainty in health, illness, and medicine. Medical sociology should give the study of ignorance a prominent place in its future.
Footnotes
Acknowledgements
We thank Linsey McGoey for helping clarify our thoughts on uncertainty.
