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.
View Article and Find Full Text PDFHealth Commun
October 2023
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.
View Article and Find Full Text PDFGlob Qual Nurs Res
November 2020
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.
View Article and Find Full Text PDFWhile 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.
View Article and Find Full Text PDFBackground: 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.
View Article and Find Full Text PDFJ Empir Res Hum Res Ethics
December 2018
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.
View Article and Find Full Text PDFJ Acquir Immune Defic Syndr
October 2018
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.
View Article and Find Full Text PDFPhase 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.
View Article and Find Full Text PDFIn 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.
View Article and Find Full Text PDFIn 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.
View Article and Find Full Text PDFTheorized 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.
View Article and Find Full Text PDFFictional 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.
View Article and Find Full Text PDFIn 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.
View Article and Find Full Text PDFAggregate 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.
View Article and Find Full Text PDFLittle is known about how exclusionary practices (i.e., ignored, ostracized) by managers differ across demographics and influence nursing outcomes.
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