Tweeting Jokes, Tweeting Hope: Humor Practices during the 2014 Ebola Outbreak.

In this article, we examine how humor practices on Twitter resist dominant emotion norms during an emerging disease outbreak. Humor may seem frivolous or irreverent but can constitute a powerful practice for channeling and managing difficult emotions - like anxiety and fear - during an outbreak. We find that the use of AAVE (African-American Vernacular English) and Black cultural references were widespread in Ebola-related tweets using humor. Together these communicative practices constitute Black Twitter. Humor can signal membership in Black culture while also performing and managing specific emotions in relation to epidemic risk in online spaces. Humor practices on Black Twitter were more likely to reimagine social connections despite the risks posed by the epidemic, whereas mainstream forms of humor emphasized retreat and self-isolation in response to an epidemic threat. These findings center the agency and creativity of this influential digital community while showing the variability of communication practices among a group facing disproportionate vulnerability to outbreaks and public health threats. The implications for public health messaging are discussed.

Gendered Logics of Biomedical Research: Women in U.S. Phase I Clinical Trials.

Despite the importance of including diverse populations in biomedical research, women remain underrepresented as healthy volunteers in the testing of investigational drugs in Phase I trials. Contributing significantly to this are restrictions that pharmaceutical companies place on the participation of women of so-called childbearing potential. These restrictions have far-reaching effects on biomedical science and the public health of women. Using 191 interviews collected over 3 years, this article explores the experiences of 47 women who navigate restrictions on their participation in U.S. Phase I trials. Women in this context face a number of contradictory criteria when trying to enroll, which can curtail their participation, justify additional surveillance, and deny pregnant women reproductive agency. The pharmaceutical industry's putative protections for hypothetical fetuses exacerbate inequalities and attenuate a thorough investigation of the safety of their drugs for public consumption. We use the framework of "anticipatory motherhood" within a gendered organizations approach to make sense of women's experiences in this context.

Healthy volunteers' perceptions of risk in US Phase I clinical trials: A mixed-methods study.

BACKGROUND: There is limited research on healthy volunteers' perceptions of the risks of Phase I clinical trials. In order to contribute empirically to long-standing ethical concerns about healthy volunteers' involvement in drug development, it is crucial to assess how these participants understand trial risks. The objectives of this study were to investigate (1) participants' views of the overall risks of Phase I trials, (2) their views of the risk of personally being harmed in a trial, and (3) how risk perceptions vary across participants' clinical trial history and sociodemographic characteristics. METHODS AND FINDINGS: We qualitatively and quantitatively analyzed semi-structured interviews conducted with 178 healthy volunteers who had participated in a diverse range of Phase I trials in the United States. Participants had collective experience in a reported 1,948 Phase I trials (mean = 10.9; median = 5), and they were interviewed as part of a longitudinal study of healthy volunteers' risk perceptions, their trial enrollment decisions, and their routine health behaviors. Participants' qualitative responses were coded, analyzed, and subsequently quantified in order to assess correlations between their risk perceptions and demographics, such as their race/ethnicity, gender, age, educational attainment, employment status, and household income. We found that healthy volunteers often viewed the overall risks of Phase I trials differently than their own personal risk of harm. The majority of our participants thought that Phase I trials were medium, high, or extremely high risk (118 of 178), but most nonetheless felt that they were personally safe from harm (97 of 178). We also found that healthy volunteers in their first year of clinical trial participation, racial and ethnic minority participants, and Hispanic participants tended to view the overall trial risks as high (respectively, Jonckheere-Terpstra, -2.433, p = 0.015; Fisher exact test, p = 0.016; Fisher exact test, p = 0.008), but these groups did not differ in regard to their perceptions of personal risk of harm (respectively, chi-squared, 3.578, p = 0.059; chi-squared, 0.845, p = 0.358; chi-squared, 1.667, p = 0.197). The main limitation of our study comes from quantitatively aggregating data from in-depth interviews, which required the research team to interpret participants' nonstandardized risk narratives. CONCLUSIONS: Our study demonstrates that healthy volunteers are generally aware of and reflective about Phase I trial risks. The discrepancy in healthy volunteers' views of overall and personal risk sheds light on why healthy volunteers might continue to enroll in clinical trials, even when they view trials on the whole as risky.

"I Can Never Be Too Comfortable": Race, Gender, and Emotion at the Hospital Bedside.

In this article, we examine how race and gender shape nurses' emotion practice. Based on audio diaries collected from 48 nurses within two Midwestern hospital systems in the United States, we illustrate the disproportionate emotional labor that emerges among women nurses of color in the white institutional space of American health care. In this environment, women of color experience an emotional double shift as a result of negotiating patient, coworker, and supervisor interactions. In confronting racist encounters, nurses of color in our sample experience additional job-related stress, must perform disproportionate amounts of emotional labor, and experience depleted emotional resources that negatively influence patient care. Methodologically, the study extends prior research by using audio diaries collected from a racially diverse sample to capture emotion as a situationally emergent and complex feature of nursing practice. We also extend research on nursing by tracing both the sources and consequences of unequal emotion practices for nurse well-being and patient care.

Serial Participation and the Ethics of Phase 1 Healthy Volunteer Research.

Phase 1 healthy volunteer clinical trials-which financially compensate subjects in tests of drug toxicity levels and side effects-appear to place pressure on each joint of the moral framework justifying research. In this article, we review concerns about phase 1 trials as they have been framed in the bioethics literature, including undue inducement and coercion, unjust exploitation, and worries about compromised data validity. We then revisit these concerns in light of the lived experiences of serial participants who are income-dependent on phase 1 trials. We show how participant experiences shift attention from discrete exchanges, behaviors, and events in the research enterprise to the ongoing and dynamic patterns of serial participation in which individual decision-making is embedded in collective social and economic conditions and shaped by institutional policies. We argue in particular for the ethical significance of structurally diminished voluntariness, routine powerlessness in setting the terms of exchange, and incentive structures that may promote pharmaceutical interests but encourage phase 1 healthy volunteers to skirt important rules.

Risk and Emotion Among Healthy Volunteers in Clinical Trials.

Theorized as objective or constructed, risk is recognized as unequally distributed across social hierarchies. Yet the process by which social forces shape risk and risk emotions remains unknown. The pharmaceutical industry depends on healthy individuals to voluntarily test early-stage, investigational drugs in exchange for financial compensation. Emblematic of risk in late modernity, Phase I testing is a rich site for examining how class and race shape configurations of emotion and risk. Using interview data from 178 healthy trial participants, this article examines emotion and risk as mutually constituting processes linked to biographical context and social structure. Biographical events like economic insecurity and incarceration influence how risk is felt by providing comparative experiences of felt risk and felt benefits. Such events, in turn, are structured by class-based and racial inequalities, linking class and race positions to primary emotional experiences of risk.

"My Color Doesn't Lie": Race, Gender, and Nativism among Nurses in the Netherlands.

Nursing in white-majority populations tends to be associated with white women. Yet as Western Europe and North America undergo demographic shifts, such associations are challenged as people of different racial and national backgrounds take on positions in nursing and other professional roles in healthcare. This article explores the work experiences of nurses from diverse backgrounds as they confront intersecting forms of sexism, racism, and nativism in the Netherlands. We use the conceptual framework of "appropriate labor" to help explain these experiences in connection with the wider climate of Dutch native homogeneity and race and racism denial. These findings have implications for work policies that might better support minority nurses in contexts of increasing superdiversity while also challenging wider cultural norms in the Netherlands that continue to associate nursing with whiteness and deny the presence of racism.

Disadvantaged, Outnumbered, and Discouraged: Women's Experiences as Healthy Volunteers in U.S. Phase I Trials.

While enormous strides have been made in the representation of women in clinical trials, the percentage of women enrolling in Phase I trials still remains low, which both raises public health concerns about the safety of new drugs and social justice concerns regarding their inclusion in research. As part of a longitudinal study of healthy volunteers in the United States, our inquiry aimed to examine impediments to women enrolling in Phase I trials as well as their experiences participating in these studies at residential research clinics. We analyzed 111 semi-structured interviews conducted with 47 women who had enrolled in at least one Phase I trial. Our study indicates that women face discrimination during all stages of their participation in Phase I trials from their ability to qualify for studies, the treatment they receive in the clinic facilities, and a lack of social support. Specifically, we found that (1) study designs disadvantage participants of childbearing potential, (2) women feel vulnerable in the clinic space when outnumbered by men, and (3) heterosexual women are often discouraged from participation by their husbands or significant others. Placing these findings within the scholarly literature on barriers to women's clinical trial participation, we argue that diverse strategies attending both to physiological and social factors are needed to combat inequalities in U.S. Phase I trial participation.

Exceptional Risk: Healthy Volunteers' Perceptions of HIV/AIDS Clinical Trials.

As with all early-stage testing of investigational drugs, clinical trials targeting HIV/AIDS can pose unknown risks to research subjects. Unlike sick participants seeking a therapeutic benefit, the motivations and barriers for healthy volunteers are more complex and understudied. Drawing on interviews and clinical trial data from 178 healthy volunteers, we examine how they perceive HIV/AIDS studies in the early stages of testing. A subset of healthy volunteers see phase I HIV/AIDS studies as particularly risky for reasons ranging from fear of catching the disease or having long-lasting and uncomfortable side effects to inexplicable fears that they cannot even articulate. Some participants have had past negative experiences in such trials that inform these views, but others cite information from staff and other participants as influential. Healthy volunteers' general fears concerning AIDS also shape their views of participating in phase I HIV/AIDS clinical trials.

Healthy Volunteers' Perceptions of the Benefits of Their Participation in Phase I Clinical Trials.

Other than the financial motivations for enrolling in Phase I trials, research on how healthy volunteers perceive the benefits of their trial participation is scant. Using qualitative interviews conducted with 178 U.S. healthy volunteers enrolled in Phase I trials, we investigated how participants described the benefits of their study involvement, including, but not limited to, the financial compensation, and we analyzed how these perceptions varied based on participants' sociodemographic characteristics and clinical trial history. We found that participants detailed economic, societal, and noneconomic personal benefits. We also found differences in participants' perceived benefits based on gender, age, ethnicity, educational attainment, employment status, and number of clinical trials completed. Our study indicates that many healthy volunteers believe they gain more than just the financial compensation when they accept the risks of Phase I participation.

This isn't going to end well: Fictional representations of medical research in television and film.

Fictional television shows and films convey cultural assumptions about scientists and the research enterprise. But how do these forms of entertainment portray medical research participants? We sampled 65 television shows and films released between 2004 and 2014 to determine the ways in which medical research and human participants are represented in popular media. We found that research participants are largely represented as White, male, and lower or working class and that 40% of the participants depicted in these fictional accounts were seeking financial compensation, 34% were hoping for a therapeutic benefit, and 15% were coerced into participation. Regardless of participant motivation, media representations tended to portray a negative outcome of medical research. Interpreting the themes in these media, we argue that these fictional portrayals might provide the public with valuable representations of medical research, especially in terms of risks to research participants, scientific failure, and researchers' conflicts of interest.

From fantasy to reality: managing biomedical risk emotions in and through fictional media.

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.

Peering into the pharmaceutical "pipeline": investigational drugs, clinical trials, and industry priorities.

In spite of a growing literature on pharmaceuticalization, little is known about the pharmaceutical industry's investments in research and development (R&D). Information about the drugs being developed can provide important context for existing case studies detailing the expanding--and often problematic--role of pharmaceuticals in society. To access the pharmaceutical industry's pipeline, we constructed a database of drugs for which pharmaceutical companies reported initiating clinical trials over a five-year period (July 2006-June 2011), capturing 2477 different drugs in 4182 clinical trials. Comparing drugs in the pipeline that target diseases in high-income and low-income countries, we found that the number of drugs for diseases prevalent in high-income countries was 3.46 times higher than drugs for diseases prevalent in low-income countries. We also found that the plurality of drugs in the pipeline was being developed to treat cancers (26.2%). Interpreting our findings through the lens of pharmaceuticalization, we illustrate how investigating the entire drug development pipeline provides important information about patterns of pharmaceuticalization that are invisible when only marketed drugs are considered.

Tracking the pharmaceutical pipeline: clinical trials and global disease burden.

Aggregate data about pharmaceutical research and development (R&D) tend to examine Phase III trials. Hence, there are few published data about investigational drugs in earlier phases of clinical development that might fail. It is also unclear how well R&D corresponds to disease burden. We track the pharmaceutical pipeline using data from industry publications that provide otherwise unreported information about industry-sponsored clinical trials. The sample includes 2,477 unique drug entities in 4,182 clinical trials. The majority of drugs targeted neoplasms (26.20%), neurological diseases/diseases of the sense organs (13.48%), infectious and parasitic diseases (10.5%), and endocrine, metabolic, nutrition, and immunity disorders (9.45%). Less than 6% of drugs targeted diseases of the circulatory system, which represent the most prevalent causes of global mortality. Detailing the pharmaceutical pipeline, our findings suggest that pharmaceutical development does not adequately address global disease burden. Future research on the under-reported details of Phase I and II clinical trials is needed to understand how the industry operates and how its resource-allocation matches global health concerns.

The effect of manager exclusion on nurse turnover intention and care quality.

Little is known about how exclusionary practices (i.e., ignored, ostracized) by managers differ across demographics and influence nursing outcomes. This study examines whether managerial exclusion varies by generation, race, and gender, and the extent to which these variables, in turn, relate to turnover intention and perceived patient care among a sample of 747 nurses working in hospitals in a midwestern health system. Exclusion did not differ across most demographic groups, though men reported less exclusion than women. Younger nurses of the Millennial generation, those feeling excluded, and those with fewer years of experience reported lower quality patient care. Managerial exclusion, being a nurse of color, and less experience were associated with stronger intentions to leave. Nursing leaders should attend to factors that may contribute to racial minorities seeking other jobs, diminish younger nurses' ability to provide high-quality care, and minimize practices that might lead nurses to feel excluded.