The effects of communicating uncertainty on public trust in facts and numbers.

Uncertainty is inherent to our knowledge about the state of the world yet often not communicated alongside scientific facts and numbers. In the "posttruth" era where facts are increasingly contested, a common assumption is that communicating uncertainty will reduce public trust. However, a lack of systematic research makes it difficult to evaluate such claims. We conducted five experiments-including one preregistered replication with a national sample and one field experiment on the BBC News website (total n = 5,780)-to examine whether communicating epistemic uncertainty about facts across different topics (e.g., global warming, immigration), formats (verbal vs. numeric), and magnitudes (high vs. low) influences public trust. Results show that whereas people do perceive greater uncertainty when it is communicated, we observed only a small decrease in trust in numbers and trustworthiness of the source, and mostly for verbal uncertainty communication. These results could help reassure all communicators of facts and science that they can be more open and transparent about the limits of human knowledge.

Getting back to normal? Identity and role disruptions among adults with Long COVID.

Long COVID is a novel chronic illness with a variety of symptoms that people who have labelled themselves 'long-haulers' experience for an extended duration following a COVID-19 infection. We draw on in-depth interviews conducted in March-April 2021 with 20 working-aged adults in the U.S. who self-identified as long-haulers to understand the consequences for identities. The results demonstrate that Long COVID has important consequences for identities and sense of self. Long-haulers described experiencing three stages of biographical disruptions: realising their illness experience as misaligned with sense of self and embodied, age-based expectations; facing challenges to identities and changes in social roles; and reconciling illness and identity in the context of an uncertain prognosis. It remains unclear how long-haulers will resolve biographical disruptions and identity conflicts, especially as scientific insights about this novel condition emerge. Such outcomes may depend largely on whether Long COVID remains a contested illness or medical knowledge progresses to improve their quality of life. For now, healthcare providers may approach Long COVID holistically to address the identity disruptions that long-haulers face as they manage the consequences of this chronic illness.

Narrative curation and stewardship in contested marketspaces.

We identify value narratives as stories that promote certain product or service attributes as benefits within the marketplace. We show how value narratives reflect benefit attributes that align with alternative versus mainstream market settings. Our empirical focus is local food value narratives within a common local food system with alternative settings being farmers' markets and mainstream settings being supermarkets. Farmers' market and supermarket purveyors choose which benefit characteristics to emphasize throughout narrative curation, enabling us to witness strategic narrative use, or what we term narrative stewardship. We find that multiple value narratives express an array of 'local food' benefits in ways that create a contested marketplace. Narrative deployment at farmers' markets is guided by an amalgam of institutional perspectives, while narrative use at supermarkets is dominated by a market institutional perspective. We identify a continuum of value narrative stewardship (promotion-neglect) within farmers' markets that leaves the meaning and value of 'local food' vulnerable to mainstream market appropriation via narrative voidance, dilution, and replacement. We propose strategies for better value narrative stewardship.

Contested racial identity and the health of women and their infants.

Contested racial identity- self-identified race not matching socially-assigned race-may be an indication of experiences with racism. We aimed to understand the relationship between contested racial identity and women's health behaviors, health outcomes, and infant health outcomes. We used 2012-2015 Massachusetts Pregnancy Risk Assessment Monitoring System data on 5735 women linked with infants' birth certificates. We conducted regression analyses to examine associations between contested racial identity with pregnancy and infant health outcomes and further sub-analyses among women who had experienced a contested racial identity. A total of 901 (15.7%) women reported a contested racial identity. When compared to those who did not, women who had a contested racial identity had lower odds of initiating prenatal care in the first trimester (AOR: 0.76, 95% CI: 0.62, 0.95) and higher odds of smoking (AOR: 1.70, 95% CI: 1.32, 2.19). Among women who had experienced a contested racial identity, those who were socially-assigned as White had decreased odds of having a low birth weight baby (AOR: 0.52, 95% CI: 0.28, 0.99) when compared to those socially-assigned as non-White. Contested racial identity is common; it affects the behaviors that women engage in and the outcomes they experience postpartum. Further, we found that there is a potential benefit to a White social ascription. This work adds to growing evidence of the impact of racism on maternal and infant health in the United States.

The long tail of COVID and the tale of long COVID: Diagnostic construction and the management of ignorance.

We bring together insights from the sociology of diagnosis and the sociology of ignorance to examine the early diagnostic unfolding of 'Long COVID' (LC). Originally described by patient activists, researchers set out to ponder its unwieldy clinical boundaries. Using a scoping review method in tandem with qualitative content analytic techniques, we analyse medicine's initial struggles to construct a LC diagnosis. Paying attention to the dynamics of ignorance, we highlight three consequential conceptual manoeuvres in the early classifications of LC: causal agnosticism concerning the relationship between COVID-19 and LC, evasion of lumping LC with similar conditions; and the predictable splitting off of medically explainable cases from the LC designation. These manoeuvres are not maleficent, inept or unreasonable. They are practical but impactful responses to the classificatory dilemmas present in the construction of diagnoses amidst ignorance. Although there are unique aspects to LC, we suggest that its early fate is nevertheless emblematic of medicine's diagnostic standardisation processes more generally. To varying degrees, diagnoses are ignorance management strategies; they create a pathway through the uncertainty at the core of disease realities. However, while diagnoses circumscribe some types of ignorance, they produce others through the creation of blind spots and paths not taken.

Re-engineering contested concepts. A reflective-equilibrium approach.

Social scientists, political scientists and philosophers debate key concepts such as democracy, power and autonomy. Contested concepts like these pose questions: Are terms such as "democracy" hopelessly ambiguous? How can two theorists defend alternative accounts of democracy without talking past each other? How can we understand debates in which theorists disagree about what democracy is? This paper first discusses the popular strategy to answer these questions by appealing to Rawls's distinction between concepts and conceptions. According to this approach, defenders of rival conceptions of, e.g. justice can disagree without talking past each other because they share the concept of justice. It is argued that this idea is attractive but limited in application and that it fails to do justice to the dynamic and normative aspects of concept formation. Reflective equilibrium is then suggested as an alternative approach. It replaces the static contrast between a conceptual 'core' and competing conceptions by a dynamic perspective of concept formation as a partly normative undertaking: pre-theoretic language use and commitments can provide a shared starting point for developing alternative accounts which yield different concepts of, e.g. justice. This perspective provides a new understanding of how it is possible that different theorists defend rival accounts of, e.g. justice, without talking past each other.

Contemporary Philanthropy in the Spotlight: Pushing the Boundaries of Research on a Global and Contested Social Practice.

This article is intended as the leading article in a special issue devoted to the achievements, limitations, opportunities and risks entailed in the research and practice of contemporary philanthropy. The article first characterizes philanthropy as a highly diverse and dynamic set of social practices that has only recently been subject to the systematic scrutiny of an emerging field of research, parallel to its rapid transformation and increased societal visibility. The main debates that emerged during the last two decades while researching the complexities of contemporary philanthropy are contextualized from the perspective of multiple disciplines; and the main foci for contentious conceptualizations and societal expectations explored. In this context, contributions of the special issues are summarized. Further avenues for pushing the boundaries of philanthropy research in ways inclusive of the dynamism, diversity, multi-disciplinarity and controversy that characterize the field, while at the same time providing meaningful answers to societal concerns about the potential and shortcomings of new philanthropic practices, are drawn.

Valuing height: diagnosis, valuation and the case of idiopathic short stature.

This paper proposes a 'valuographic' approach to diagnosis, exploring how values and valuation practices are implicated in the contested diagnostic category of idiopathic short stature (ISS). ISS describes children who are 'abnormally' short but do not have any other detectable pathology. In the USA growth-promoting hormone therapy has been approved for ISS children, since 2003. However, no other jurisdiction has approved this treatment and the value of ISS as a diagnostic category remains disputed among healthcare professionals. Drawing on qualitative interviews with paediatric endocrinologists in the UK and the US, this study presents a historical snapshot illustrating how the problematisation of ISS as a diagnosis involved multiple registers of value including epistemic, economic and moral calculations of worth. Contestation of the diagnosis was not just about what counts but about what ought to be counted, as respondents' accounts of ISS gave differential weight to a range of types of evidence and methods of assessment. Ultimately what was at stake was not just the value of increased height for short patients, but what it meant to properly practice paediatric endocrinology. Consideration is then given to how a valuographic approach can be applied to sociological studies of diagnosis more broadly.

Vulnerable articulations: the opportunities and challenges of illness and recovery.

Medical anthropology overwhelmingly reveals vulnerability as a problem of powerlessness. Vulnerable groups and individuals are those exposed to the pernicious effects of inequalities, injustices, and oppressive political realities. This largely pejorative stance, we argue, simplifies the place of vulnerability within human experience and in relation to the body, health and illness. By showcasing a range of interlocking vulnerabilities, this paper reveal the spectrum of positive and negative vulnerabilities that affect health and recovery. Through the concept of vulnerable articulations, this paper argues that health and illness experiences simultaneously create and require a range of different interconnected vulnerabilities, some of them harmful, and some of them life affirming. Ethnographically, this paper explore the concept of vulnerable articulations through two contrasting case studies: a group of British and New Zealand nuclear test veterans seeking compensation from the state, and clients of equine therapy in New Zealand. These case studies reveal that understanding human vulnerability requires a close attention to how people navigate between the diverse vulnerabilities that they face, and that attaining well-being often involves harnessing positive vulnerabilities in order to lessen the effects of damaging vulnerabilities.

The enduring legacy of black lung: environmental health and contested illness in Appalachia.

Over the past twenty years there has been a deadly resurgence of coal workers' pneumoconiosis (CWP), commonly known as black lung disease. While increased prevalence of the disease is alarming, these data only capture cases where CWP has been officially recognised. We argue that many more cases of the disease are going unreported. Drawing from contested environmental illness literature, we examine issues surrounding diagnostic uncertainty and medical surveillance. We draw from qualitative data on black lung that includes in-depth interviews, observation and document analysis. Findings indicate ongoing ambiguity and contestation over diagnosis of the disease, ranging from clinical and legal debates to concerted efforts to limit official recognition. While health screenings are currently available to miners, our results indicate low participation rates based on disincentives for early detection, logistical problems, and economic fears. Miners fear workplace discrimination and retaliation for participation in black lung screening programmes. Implications for public health policy and future research are discussed.

"It Was Not Me That Was Sick, It Was the Building": Rhetorical Identity Management Strategies in the Context of Observed or Suspected Indoor Air Problems in Workplaces.

Suffering from a contested illness poses a serious threat to one's identity. We analyzed the rhetorical identity management strategies respondents used when depicting their health problems and lives in the context of observed or suspected indoor air (IA) problems in the workplace. The data consisted of essays collected by the Finnish Literature Society. We used discourse-oriented methods to interpret a variety of language uses in the construction of identity strategies. Six strategies were identified: respondents described themselves as normal and good citizens with strong characters, and as IA sufferers who received acknowledge from others, offered positive meanings to their in-group, and demanded recognition. These identity strategies located on two continua: (a) individual- and collective-level strategies and (b) dissolved and emphasized (sub)category boundaries. The practical conclusion is that professionals should be aware of these complex coping strategies when aiming to interact effectively with people suffering from contested illnesses.

(In)Visibility Online: The Benefits of Online Patient Forums for People with a Hidden Illness: The Case of Multiple Chemical Sensitivity (MCS).

Sufferers of medically unexplained conditions that are not observable in the clinic can experience multiple layers of invisibility: a lack of biomedical diagnosis; legal skepticism; political disinterest; and a loss of their prior social identity. For those with environmental sensitivities, this is compounded by literal hiddenness due to often being housebound. Drawing on an online survey of people with multiple chemical sensitivity, this article examines how the everyday experience of invisibility is mitigated by engaging with other patients online. Respondents used online forums to undertake various forms of "visibility work," including attempts to crystallize their suffering into something recognizable medically, legally, and politically, and to reconstruct an identity considered valid and deserving-although the therapeutic potential of online support was contingent on intra-group politics. This study demonstrates that online forums allow biomedicine's "invisible others" to struggle for alternative forms of recognition beyond the clinical gaze.

Is decision-making capacity an "essentially contested" concept in pediatrics?

Key legislations in many countries emphasize the importance of involving children in decisions regarding their own health at a level commensurate with their age and capacities. Research is engaged in developing tools to assess capacity in children in order to facilitate their responsible involvement. These instruments, however, are usually based on the cognitive criteria for capacity assessment as defined by Appelbaum and Grisso and thus ill adapted to address the life-situation of children. The aim of this paper is to revisit and critically reflect upon the current definitions of decision-making capacity. For this purpose, we propose to see capacity through the lens of essential contestability as it warns us against any reification of what it means to have capacity. Currently, capacity is often perceived of as a mental or cognitive ability which somehow resides within the person, obscuring the fact that capacity is not just an objective property which can be assessed, but always operates within a dominant cultural framework that "creates" that same capacity and defines the threshold between capable and incapable in a specific situation. Defining capacity as an essentially contested concept means using it in a questioning mode and giving space to alternative interpretations that might inform and advance the debate surrounding decision-making.

Europeanisation, Sovereignty and Contested States: The EU in northern Cyprus and Palestine.

Combining the literature on sovereignty and Europeanisation, this article investigates the engagement and impact of the European Union (EU) on contested states (states lacking recognition) through a comparative study of the Turkish Republic of Northern Cyprus (TRNC) and Palestine. We find that characteristics of contested statehood mediate EU engagement and impact: the lack of international recognition limits EU's engagement but encourages development promotion, international integration and assistance of local civil society. Lack of territorial control limits engagement, but ineffective government offers opportunities for development promotion and state-building. As such, and in addition to offering a rich empirical account of two prominent contested states, the article contributes to the discussion of international engagement by developing an innovative conceptual framework for understanding EU's impact on contested states-a topic neglected within a literature dominated by conventional statehood or conflict resolution themes but very important given extensive international engagement in contested states-and related conflicts.

Beyond (Models of) Disability?

The strategy of developing an ontology or models of disability as a prior step to settling ethical issues regarding disabilities is highly problematic for two reasons. First, key definitional aspects of disability are normative and cannot helpfully be made value-neutral. Second, if we accept that the contested concept of disability is value-laden, it is far from obvious that there are definitive reasons for choosing one interpretation of the concept over another. I conclude that the concept of disability is better left ethically open-ended or broad enough to encompass the examination of various ethical issues (such as oppression, minority rights, or physical discomfort). Alternatively, the concept of disability could be altogether abandoned in order to focus on specific issues without being hindered by debates about the nature of disability. Only political costs, rather than conceptual considerations internal to the models, could be weighed against such a conclusion.

Race, Toxic Exposures, and Environmental Health: The Contestation of Lupus among Farmworkers.

Extant research has established that low-wage workers of color are at higher risk for occupational exposures. While the medical sociology literature regarding contested illness provides insights into the dynamics surrounding workplace exposures, some environmental illnesses such as lupus have gotten scant analytical attention. This is a significant gap because women of color, who are more likely to hold these high-risk jobs, are disproportionately affected by the disease. We examine a case of pesticide exposure among Black women farmworkers in Florida. We investigate how race and occupation intersect to shape lived experiences with toxics and what role race plays in the process of contesting exposures and illness. Our data include in-depth interviews (N = 36), media coverage, and archival materials. Our findings indicate that race-related factors played an important part in shaping the farmworkers' experiences with exposures, illness, and interaction with elite actors.

Engagement with fact-checked posts on Reddit.

Contested factual claims shared online are of increasing interest to scholars and the public. Characterizing temporal patterns of sharing and engagement with such information, as well as the effect of sharing associated fact-checks, can help us understand the online political news environment more fully. Here, we investigate differential engagement with fact-checked posts shared online via Reddit from 2016 to 2018. The data comprise ∼29,000 conversations, ∼849,000 users, and ∼9.8 million comments. We classified the veracity of the posts being discussed as true, mixed, or false using three fact-checking organizations. Regardless of veracity, fact-checked posts had larger and longer lasting conversations than claims that were not fact-checked. Among those that were fact-checked, posts rated as false were discussed less and for shorter periods of time than claims that were rated as true. We also observe that fact-checks of posts rated as false tend to happen more quickly than fact-checks of posts rated as true. Finally, we observe that thread deletion and removal are systematically related to the presence of a fact-check and the veracity of the fact-check, but when deletion and removal are combined the differences are minimal. Theoretical and practical implications of the findings are discussed.

Contesting misrecognition online: Experiences of epistemic in/justice by vloggers with contested illnesses.

Contested illnesses, such as fibromyalgia, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and chronic Lyme disease (CLD), are surrounded by polemic debates regarding their etiology, symptomology, treatment, and even their existence. People who suffer from these contested illnesses arguably also suffer from "epistemic injustice." This concept, coined by the philosopher Miranda Fricker, captures how people's knowledge may be discredited because of identity prejudices. In our paper, this concept is used to understand how seven Dutch women with contested illnesses experience the emancipatory potential of their vlogging practices. Our findings show how these women understood their vlogging as a means to break with epistemic smothering, understood as the propensity to cater ones testimony to one's audience (Dotson, 2011), and as a means to attain and enhance epistemic justice. However, our findings also show how vlogging about contested illnesses did not seem to allow these women to fully break with their epistemic smothering practices, and that the ableist design and gendered norms of YouTube were experienced as obstacles to attaining epistemic justice. We conclude that, even though social media do seem to hold emancipatory potential for these women, the experiences of individual users are diverse and ambiguous.

Medical Gaslighting and Lyme Disease: The Patient Experience.

Even though there are approximately half a million new cases of Lyme disease in the US annually, according to the CDC, it is often undiagnosed or misdiagnosed, which can result in a chronic, multisystemic condition. Lyme disease is a recognized public health threat and is a designated "notifiable disease". As such, Lyme disease is mandated to be reported by the CDC. Despite this, both acute and chronic Lyme disease (CLD) have been relegated to the category of "contested illnesses", which can lead to medical gaslighting. By analyzing results from an online survey of respondents with Lyme disease (n = 986), we elucidate the lived experiences of people who have been pushed to the margins of the medical system by having their symptoms attributed to mental illness, anxiety, stress, and aging. Further, respondents have had their blood tests and erythema migrans (EM) rashes discounted and were told that CLD simply does not exist. As a result, a series of fruitless consultations often result in the delay of a correct diagnosis, which has deleterious consequences. This is the first study that addresses an extensive range of gaslighting techniques experienced by this patient population.

Individualizing the burnout problem: Health professionals' discourses of burnout and recovery in the context of rehabilitation.

This discourse analytical study explores how health professionals (HPs) construct burnout as a form of mental distress in the context of Finnish burnout rehabilitation framed with a particular rehabilitation ethos. Burnout is a fuzzy concept and lacks a disease status. Therefore, it calls for context-specific definition and justification. By highlighting the socially and interactionally produced character of categories of mental distress, the study investigates the kinds of discourses HPs use to formulate "the problem" and its solutions, and how people dealing with burnout are categorized in these discourses. The data consists of field notes from the observation of group discussion sessions in two 1-year burnout rehabilitation courses. As a result of the analysis, five partly overlapping discourses were identified: psychological, evolutionary, healthy lifestyle, biomedical, and welfare. Within these discourses, people who experience burnout were categorized as over-conscientious employees, "good girls," "primitive people," self-responsible rehabilitees, patients, and (aging) employees with social and legal rights. Burnout rehabilitation and HPs' views reproduce a cultural and clinical discourse around burnout in which work-related problems are treated as individual-level problems and individuals are responsibilized for the management of mental distress. Based on the results, it is concluded that the hybrid type of interventions that attempt to influence both individual- and work-related problems behind burnout would help to prevent people dealing with burnout from being over-responsibilized for solving problems at the workplace.