HEALTH RISK & SOCIETY

'In-between' and other reasonable ways to deal with risk and uncertainty: A review article
Zinn JO
How people deal with risk and uncertainty has fuelled public and academic debate in recent decades. Researchers have shown that common distinctions between rational and 'irrational' strategies underestimate the complexity of how people approach an uncertain future. I suggested in 2008 that strategies in-between do not follow standards of instrumental rationality nor they are 'irrational' but follow their own logic which works well under particular circumstances. Strategies such as trust, intuition and emotion are an important part of the mix when people deal with risk and uncertainty. In this article, I develop my original argument. It explores in-between strategies to deal with possible undesired outcomes of decisions. I examine 'non-rational strategies' and in particular the notions of active, passive and reflexive hope. Furthermore, I argue that my original typology should be seen as a triangular of reasonable strategies which work well under specific circumstances. Finally, I highlight a number of different ways in which these strategies combine.
From scientific article to press release to media coverage: advocating alcohol abstinence and democratising risk in a story about alcohol and pregnancy
Lee E, Sutton RM and Hartley BL
In this article, we follow the approach taken by Riesch and Spiegalhalter in "Careless pork costs lives': Risk stories from science to press release to media' published in this journal, and offer an assessment of one example of a 'risk story'. Using content and thematic qualitative analysis, we consider how the findings of an article 'Fetal Alcohol Exposure and IQ at Age 8: Evidence from a Population-Based Birth-Cohort Study' were framed in the article itself, the associated press release, and the subsequent extensive media coverage. We contextualise this consideration of a risk story by discussing a body of work that critically engages with the development and global proliferation of efforts to advocate for alcohol abstinence to pregnant (and pre-pregnant) women. This work considers the 'democratisation' of risk, a term used to draw attention to the expansion of the definition of the problem of drinking in pregnancy to include any drinking and all women. We show here how this risk story contributed a new dimension to the democratisation of risk through claims that were made about uncertainty and certainty. A central argument we make concerns the contribution of the researchers themselves (not just lobby groups or journalists) to this outcome. We conclude that the democratisation of risk was advanced in this case not simply through journalists exaggerating and misrepresenting research findings, but that communication to the press and the initial interpretation of findings played their part. We suggest that this risk story raises concerns about the accuracy of reporting of research findings, and about the communication of unwarrantedly worrying messages to pregnant women about drinking alcohol.
Accounting for failure: risk-based regulation and the problems of ensuring healthcare quality in the NHS
Beaussier AL, Demeritt D, Griffiths A and Rothstein H
In this paper, we examine why risk-based policy instruments have failed to improve the proportionality, effectiveness, and legitimacy of healthcare quality regulation in the National Health Service (NHS) in England. Rather than trying to prevent all possible harms, risk-based approaches promise to rationalise and manage the inevitable limits of what regulation can hope to achieve by focusing regulatory standard-setting and enforcement activity on the highest priority risks, as determined through formal assessments of their probability and consequences. As such, risk-based approaches have been enthusiastically adopted by healthcare quality regulators over the last decade. However, by drawing on historical policy analysis and in-depth interviews with 15 high-level UK informants in 2013-2015, we identify a series of practical problems in using risk-based policy instruments for defining, assessing, and ensuring compliance with healthcare quality standards. Based on our analysis, we go on to consider why, despite a succession of failures, healthcare regulators remain committed to developing and using risk-based approaches. We conclude by identifying several preconditions for successful risk-based regulation: goals must be clear and trade-offs between them amenable to agreement; regulators must be able to reliably assess the probability and consequences of adverse outcomes; regulators must have a range of enforcement tools that can be deployed in proportion to risk; and there must be political tolerance for adverse outcomes.
Growing better brains? Pregnancy and neuroscience discourses in English social and welfare policies
Lowe P, Lee E and Macvarish J
In recent years, English welfare and health policy has started to include pregnancy within the foundation stage of child development. The foetus is also increasingly designated as 'at risk' from pregnant women. In this article, we draw on an analysis of a purposive sample of English social and welfare policies and closely related advocacy documents to trace the emergence of neuroscientific claims-making in relation to the family. In this article, we show that a specific deterministic understanding of the developing brain that only has a loose relationship with current scientific evidence is an important component in these changes. We examine the ways in which pregnancy is situated in these debates. In these debates, maternal stress is identified as a risk to the foetus; however, the selective concern with women living in disadvantage undermines biological claims. The policy claim of neurological 'critical windows' also seems to be influenced by social concerns. Hence, these emerging concerns over the foetus' developing brain seem to be situated within the gendered history of policing women's pregnant bodies rather than acting on new insights from scientific discoveries. By situating these developments within the broader framework of risk consciousness, we can link these changes to wider understandings of the 'at risk' child and intensified surveillance over family life.
Examining intuitive risk perceptions for cancer in diverse populations
Hay JL, Baser R, Weinstein ND, Li Y, Primavera L and Kemeny MM
In this article we examine intuitive dimensions of personal cancer risk likelihood, which theory and empirical evidence indicate may be important elements in the risk perception process. We draw on data from a study of risk perceptions in three social groups, university students, men living in the community, and primary care patients living in urban area. The study took place in 2007-2011, in New York State (Garden City and New York City) and Boston, Massachusetts. This study used items developed from categories identified in prior qualitative research specifying emotions and attitudes activated in cancer risk determination to examine perception of cancer risks. Across three samples - university students (N=568), community men (N=182), and diverse, urban primary care patients (N=127) - we conducted exploratory factor and construct analyses. We found that the most reliable two factors within the five-factor solution were Cognitive Causation, tapping beliefs that risk thoughts may encourage cancer development, and Negative Affect in Risk, assessing negative feelings generated during the risk perception process. For these factors, there were high levels of item endorsement, especially in minority groups, and only modest associations with established cancer risk perception and worry assessments, indicating novel content. These items may prove useful in measuring and comparing intuitive cancer risk perceptions across diverse population subgroups.
Perceptions and experiences of environmental health risks among new mothers: a qualitative study in Ontario, Canada
Crighton EJ, Brown C, Baxter J, Lemyre L, Masuda JR and Ursitti F
There is a growing awareness and concern in contemporary societies about potential health impacts of environmental contaminants on children. Mothers are traditionally more involved than other family members in managing family health and household decisions and thus targeted by public health campaigns to minimise risks. However little is known about how new mothers perceive and experience environmental health risks to their children. In 2010, we undertook a parallel case study using qualitative, in-depth interviews with new mothers and focus groups with public health key informants in two Public Health Units in Ontario Province, Canada. We found that the concern about environmental hazards among participants ranged from having no concerns to actively incorporating prevention into daily life. Overall, there was a common perception among participants that many risks, particularly in the indoor environment, were controllable and therefore of little concern. But environmental risks that originate outside the home were viewed as less controllable and more threatening. In response to such threats, mothers invoked coping strategies such as relying on the capacity of children's bodies to adapt. Regardless of the strategies adopted, actions (or inactions) were contingent upon active information seeking. We also found an optimistic bias in which new mothers reported that other children were at greater risk despite similar environmental circumstances. The findings suggest that risk communication experts must attend to the social and environmental contexts of risk and coping when designing strategies around risk reducing behaviours.
Uncertain Futures: Individual Risk and Social Context in Decision-Making in Cancer Screening
Lee SJ
A core logic of cancer control and prevention, like much in public health, turns on the notion of decision-making under conditions of uncertainty. Population-level data are increasingly used to develop risk profiles, or estimates, that clinicians and the consumer public may use to guide individual decisions about cancer screening. Individual risk perception forms a piece of a larger social economy of decision-making and choice that makes population screening possible. Individual decision-making depends on accessing and interpreting available clinical information, filtered through the lens of personal values and both cognitive and affective behavioral processes. That process is also mediated by changing social roles and interpersonal relationships. This paper begins to elucidate the influence of this "social context" within the complexity of cancer screening. Reflecting on current work in risk and health, I consider how ethnographic narrative methods can enrich this model.
New genetics, new ethics? Globalisation and its discontents
Glasner P and Rothman H
The paper discusses the rapid and significant development of new genetic technologies (in health, food and agriculture) in the theoretical context of the globalisation debate. We show how the studies on the ethical, legal and social implications of biotechnological innovation have themselves emerged as an important factor in the technological innovation and product development process. Ethical considerations are becoming integral to attempts to understand techno-scientific developments in late modernity. However, ethical studies have so far been more focused on the medical rather than the overall commercial application of genomics. Their relevance to this wider context of the globalised commodification of new genetics needs to be explored. Of special significance is the introduction of ethical considerations into the debates on globalised risk, which we will explore in relation to increasing disparities between the global North and South.
Commodifying animals: ethical issues in genetic engineering of animals
Almond B
The genetic modification of living beings raises special ethical concerns which go beyond general discussion of animal rights or welfare. Although the goals may be similar, biotechnology has accelerated the process of modification of types traditionally carried out by cross-breeding. These changes are discussed in relation to two areas: biomedicine, and animal husbandry. Alternative ethical approaches are reviewed, and it is argued that the teleological thesis underlying virtue ethics has special relevance here. The case for and the case against genetic engineering and patenting of life-forms are examined, and conclusions are drawn which favour regulation, caution and respect for animals and animal species.
Environmental health risk relationships, responsibility, and sources of information among Vietnamese Americans in coastal Mississippi
Covert HH, Sherman M, Le D and Lichtveld MY
Coastal communities along the U.S. Gulf of Mexico have been profoundly shaped by environmental health (EH) threats, reflecting the region's history of natural and technological disasters, as well as ongoing issues of environmental degradation and pollution. The Vietnamese American community in the state of Mississippi is vulnerable to EH threats, but there is limited research on their risk perceptions. Understanding perceptions of risk and responsibility is important to manage EH risks and promote community resilience. This community-based participatory research study characterizes Vietnamese American perceptions of EH risks, sources of information, and responsibility in coastal Mississippi. Five focus groups were conducted in 2016 and 2017 in Biloxi, Mississippi with Vietnamese Americans working in the seafood industry (n=24) and mothers of children under the age of 18 (n=25). Findings related to participants' concerns with air quality, drinking water quality, and the 2010 Deepwater Horizon oil spill are interpreted using Boholm's relational theory of risk. Unreliable access to healthcare and limited English proficiency constrain participants from acting on their environmental health risk relationships. A community-based organization in Biloxi that works with Vietnamese Americans plays an important role in addressing risk in this population.
Cultural influences on the management of environmental health risks among low-income pregnant women
Mundorf CA, Wilson MJ, Shankar A, Wickliffe JK and Lichtveld MY
Following environmental health disasters such as Hurricane Katrina and the Gulf Oil Spill, U.S. Gulf residents expressed concern regarding air quality. Women with children make many decisions that mitigate household air quality risks; however, research examining culture's influence in their risk perception and the influence which this has on their behaviour is limited. In this article we examine the cultural connection between low-income women with children along the U.S. Gulf concerning the local threat of air quality. We used cultural consensus analysis to examine the perceptions of low-income, first-time pregnant women. We undertook an interview survey of 112 women living in Southeast Louisiana, USA between May 2014 and March 2015. In this article we examine if there was a shared (cultural) understanding among these women on how to manage air quality threats, to evaluate what determined cultural sharing in the group, and to explore what role cultural beliefs played in their intended household strategies. We found that although air quality was rarely discussed by the women in our study, we were able to identify two multi-centric cultural models of how these women sought to make sense of air quality issues. In one model they relied on their immediate social network of family and friends while in the other model they were willing to make use of official sources of information. These two models helped explain what measures these women planned to take to address air quality issues in an around their household. Our findings show that cultural norms permeate the assessment of risk in a community and that programmes designed to improve public health need to take into account the cultural context of the population.
Cultural Worldviews and Perceived Risk of Colon Cancer and Diabetes
Chen X, Orom H, Kiviniemi MT, Waters EA, Schofield E, Li Y and Hay JL
Individuals with different cultural worldviews conceptualize risks in distinct ways, yet this work has not extended to personal illness risk perception. The purpose of this study was to 1) examine the relationships between two types of cultural worldviews (Hierarchy-Egalitarian; Individualism-Communitarianism) and perceived risk (perceived severity and susceptibility) for diabetes and colon cancer, 2) test whether health literacy modifies the above relationships, and 3) investigate whether trust in government health information functions as a putative mediator of the relations between cultural worldviews and disease perceived risk. We recruited (N=600) participants from a nationally-representative Internet survey panel. Results were weighted so the findings are representative of the general United States population. People with a more hierarchical worldview expressed lower perceived susceptibility to developing both diabetes and colon cancer, and perceived these diseases to be less severe, relative to those with a less hierarchical (more egalitarian) worldview. There was no significant association between individualistic worldview and perceived risk. Health literacy modified the relationships between hierarchical worldview and perceived risk; the associations between hierarchical worldview and lower perceived severity were stronger for those with limited health literacy. We did not observe indirect effects of cultural worldviews on perceived risk through trust in health information from government sources. It may be useful to identify specifically tailored risk communication strategies for people with hierarchical and individualistic worldviews, especially those with limited health literacy, that emphasize their important cultural values. Further research examining cultural components of illness risk perceptions may enhance our understanding of risk-protective behaviors.
The psychology of 'regrettable substitutions': Examining consumer judgements of Bisphenol A and its alternatives
Scherer LD, Maynard A, Dolinoy DC, Fagerlin A and Zikmund-Fisher BJ
Bisphenol A is a chemical used to make certain types of plastics and is found in numerous consumer products. Because scientific studies have raised concerns about Bisphenol A's potential impact on human health, it has been removed from some (but not all) products. What many consumers do not know, however, is that Bisphenol A is often replaced with other, less-studied chemicals whose health implications are virtually unknown. This type of situation is known as a potential 'regrettable substitution', because the substitute material might actually be worse than the material that it replaces. Regrettable substitutions are a common concern among policymakers, and they are a real-world manifestation of the tension that can exist between the desire to avoid risk (known possible consequences that might or might not occur) and ambiguity (second-order uncertainty), which is itself aversive. In this article we examine how people make such trade-offs using the example of Bisphenol A. Using data from Study 1, we show that people have inconsistent preferences toward these alternatives and that choice is largely determined by irrelevant contextual factors such as the order in which the alternatives are evaluated. Using data from Study 2 we further demonstrate that when people are informed of the presence of substitute chemicals, labeling the alternative product as 'free' of Bisphenol A causes them to be significantly more likely to choose the alternative despite its ambiguity. We discuss the relevance of these findings for extant psychological theories as well as their implications for risk, policy and health communication.
Navigating HIV citizenship: identities, risks and biological citizenship in the treatment as prevention era
Young I, Davis M, Flowers P and McDaid LM
The use of HIV Treatment as Prevention (TasP) has radically changed our understandings of HIV risk and revolutionised global HIV prevention policy to focus on the use of pharmaceuticals. Yet, there has been little engagement with the very people expected to comply with a daily pharmaceutical regime. We employ the concept of HIV citizenship to explore responses by people living with HIV in the UK to TasP. We consider how a treatment-based public health strategy has the potential to reshape identities, self-governance and forms of citizenship, domains which play a critical role not only in compliance with new TasP policies, but in how HIV prevention, serodiscordant relationships and (sexual) health are negotiated and enacted. Our findings disrupt the biomedical narrative which claims an end to HIV through scaling up access to treatment. Responses to TasP were framed through shifting negotiations of identity, linked to biomarkers, cure and managing treatment. Toxicity of drugs - and bodies - were seen as something to manage and linked to the shifting possibilities in serodiscordant environments. Finally, a sense of being healthy and responsible, including appropriate use of resources, meant conflicting relationships with if and when to start treatment. Our research highlights how HIV citizenship in the TasP era is negotiated and influenced by intersectional experiences of community, health systems, illness and treatment. Our findings show that the complexities of HIV citizenship and ongoing inequalities, and their biopolitical implications, will intimately shape the implementation and sustainability of TasP.
From fantasy to reality: managing biomedical risk emotions in and through fictional media
Cottingham MD and Fisher JA
In this article, we explore the role that fictional media (film and television) play in evoking and managing collective and individual anxieties towards biomedical research. We draw on two data sets: fictional media depictions of human research subjects and interviews with Phase I clinical trial participants conducted in the USA in 2013. We show how fictional media provide an outlet for collective uncertainties surrounding biomedical research through depictions that mock and dehumanise research participants, using such emotions of shock, disgust, pity, amusement and humour. We analyse how themes from fictional media are also used to manage actual clinical trial participants' own anxiety concerning the unknown risks of research participation. By contrasting the reality of their research experience with fantasy derived from entertainment media, clinical trial participants minimise the seriousness of the side effects they have or may experience in actual Phase I clinical trials. We conclude that fictional media serve an important role in the collective and individual management of risk emotion.
Social Drinking Groups and Risk Experience in Nightclubs: Latent Class Analysis
Bourdeau B, Miller BA, Voas RB, Johnson MB and Byrnes HF
Nightclubs are a setting in which young adults purposefully seek out experiences, such as drug use and alcohol intoxication that can expose them to physical harm. While physical harm occurs fairly frequently within clubs, many patrons have safe clubbing experiences. Further, not all patrons experience potential harms the same way, as there are differences in aggression and intoxication. In this article we draw on data from a research study in which we sought to better understand the role of social drinking groups in experiences of risk within nightclubs, as the majority of patrons attend with others. We collected data from 1,642 patrons comprising 615 social drinking groups as they entered and exited nightclubs in a major U.S. city. We focused on six experiences that might cause physical harm: alcohol impairment, alcohol intoxication, drug use, physical aggression, sexual aggression, and impaired driving. We aggregated patron responses across social groups and used latent class statistical analysis to determine if and how experiences tended to co-occur within groups. This analysis indicated there were five distinct classes which we named Limited Vulnerability, Aggression Vulnerability, Substance Users, Impaired Drivers and Multi-Issue. We assessed the groups within each class for distinctions on characteristics and group context. We found differences in the groups in each class, such as groups containing romantic dyads experienced less risk, while those groups with greater familiarity, greater concern for safety, and higher expectations for consumption experienced more risk. Group composition has an impact on the experiences within a club on a given night, in particular when it comes to risk and safety assessment.
A qualitative study of key stakeholders' perceived risks and benefits of psychiatric electroceutical interventions
Cabrera LY, Nowak GR, McCright AM, Achtyes E and Bluhm R
Amid a renewed interest in alternatives to psychotherapy and medication to treat depression, there is limited data as to how different stakeholders perceive of the risks and benefits of psychiatric electroceutical interventions (PEIs), including electroconvulsive therapy (ECT) and deep brain stimulation (DBS). To address this gap, we conducted 48 semi-structured interviews, including 16 psychiatrists, 16 persons diagnosed with depression, and 16 members of the general public. To provide a basis of comparison, we asked participants to also compare each modality to front-line therapies for depression and to neurosurgical procedures used for non-psychiatric conditions. Across all stakeholder groups, perceived memory loss was the most frequently mentioned potential risk with ECT. The most discussed benefits across all stakeholder groups were efficacy and quick response. Psychiatrists most often referenced effectiveness when discussing ECT, while patients and the public did so when discussing DBS. Taken as a whole, these data highlight stakeholders' contrasting perspectives on the risks and benefits of electroceuticals.
'Because I've been extremely careful': HIV seroconversion, responsibility, citizenship and the neo-liberal drug-using subject
Krüsi A, McNeil R, Moore D and Small W
In this article we examine how injection drug users who do not attribute their HIV infection to engaging in HIV risk behaviours take up and critique discourses of individual responsibility and citizenship relating to HIV risk and HIV prevention. We draw on data from a study in Vancouver, Canada (2006 - 2009) in which we interviewed individuals living with HIV who had a history of injection drug use. In this paper we focus on 6 cases studies of participants who attribute their HIV infection to engaging in HIV risk behaviours. We found that in striving to present themselves as responsible HIV citizens who did not engage in HIV risk behaviours, these participants drew on individually-focused HIV prevention discourses. By identifying themselves in these ways, they were able to present themselves as 'deserving' HIV citizens and avoid the blame associated with being HIV positive. However, in rejecting the view that they and their risk behaviours were to blame for their HIV infection and by developing an explanation that drew on broader social, structural and historical factors, these individuals were developing a tentative critique of the importance of individual responsibility in HIV transmission as opposed to dangers of infection from the socio-economic environment. By framing the risk of infection in environmental rather than individual risk-behaviour terms these individuals redistributed responsibility to reflect the social-structural realities of their lives. In this article we reflect on the implications of these findings for public health measures such as risk prevention messages. We note that it is important that such messages are not restricted to individual risk prevention but also include a focus of broader shared responsibilities of HIV.
Do Words Matter? Health Care Providers' Use of the Term Prediabetes
Thomas JJ, Moring JC, Baker S, Walker M, Warino T, Hobbs T, Lindt A and Emerson T
Communication of risk is not solely the transfer of information; it is an interaction and exchange of ideas between concerned individuals. Health care provider communication about type 2 diabetes risk status may influence individual participation in behaviours that prevent or delay the disease, which is concerning from a public health perspective. The term prediabetes is used to convey risk status and little is known about how health care providers view or use the term. In this article, we describe health care provider use and perceptions of the term prediabetes drawing on data from a survey conducted between August and November 2011 of 15 health care providers practicing in Southeast Wyoming and Northern Colorado USA. We used a grounded theory research design to guide data collection and analysis and in the interviews invited providers to describe their use and perception of the term prediabetes. We found that providers use of the term 'prediabetes' depended on their view of the term's meaning (such as, whether patients were likely to understand or be confused by it) and impact (in terms of motivating patients to mitigate risk). We found there were differences in providers' perceptions of the negative and positive associations of the term and this influenced whether or not they used it. These findings are not surprising given the lack of consensus over definitions and diagnosis criteria for prediabetes. Given this this lack of agreement, there are difficulties about the use of the term prediabetes and its use should take place within effective risk communication. Health care providers must consider essential aspects of risk communication in order to enable individuals at risk of type 2 diabetes to mitigate the risk and by doing so reduce incidence and prevalence rates of the disease.
Layering risk work amidst an emerging crisis: an ethnographic study on the governance of the COVID-19 pandemic in a university hospital in the Netherlands
de Graaff B, Bal J and Bal R
The start of the COVID-19 pandemic early 2020 has confronted healthcare sectors with risks and uncertainties on an unprecedented scale in recent history. Healthcare organisations faced acute problems, the answers to which had to be provided, and recalibrated, at short notice and informally. University hospitals played a pivotal role in providing these answers and in (re)calibrating institutional arrangements. Based on ethnographic research in an elite university hospital in the Netherlands, in this article we explore the concrete practices of governing risks and uncertainties that COVID-19 posed for the organisation of healthcare. Our fieldwork consisted of the observation of meetings at the level of the hospital boards, the staff, and the regional level. We collected relevant documents and interviewed key-actors. This approach offers us a large dataset on acute risk governance 'from within' and allows us to offer a layered ethnographic account of managerial practices. In our analysis we focus on conceptualising the work-as-done in the university hospital as risk work. We show how the risk work of our participants is generally characterised by high speed and delineated by scarcities. We differentiate between three modes of risk work: working on numbers, working on expertise and working on logistics. This risk work appears innovative, but our analysis stresses how participants' work happened in interaction with traditional institutional logics and routines.