Life stories and sickness experience: A performance perspective

This paper concerns how a performance perspective may aid our under-standing of life story data in the investigation of sickness experience. The argument is illustrated through structural and thematic analysis of the life story of a young English woman with multiple sclerosis (MS). The life story genre allowed the author creatively to explore contrasting perspectives on the shaping of social relations by bodily disorder. This was in the context of her more general concerns about definition and change in social relationships and the physical body. Performance relates the form and content of the story to generative social experience as well as to multiple readings and reformulations. It thus gives insight into the constitutive processes through which bodily knowledge is produced and shared in relation to notions of person and self.     

Talk about talk: Metacommentary and context in the analysis of psychotic discourse

This paper presents an analysis of an interview with a manic patient at a time when her discourse seemed incoherent. It addresses itself to the interface between discourse and context, and argues that adequate contextualization of discourse can render incoherent speech more understandable. Appraisal of context and analysis of metacommentary — speakers' references to the ongoing talk — makes apparently incoherent discourse intelligible, and gives access to the patient's experience of her illness.The implications of discourse analysis for psychiatric research are explored. General goals for discourse analysis in psychiatric settings are suggested, and strengths and weaknesses of the approach discussed.     

Beneath the master narrative: human trafficking, myths of sexual slavery and ethnographic realities

This paper explores the disconnections between anti-trafficking discourse and the local experience of responding to human trafficking as indicated in ethnographic data from Bosnia and Kazakhstan. Using the concept of “uptake,” I examine how anti-trafficking discourse operates as a master narrative, drawing on techniques of emotion and logic, as well as a specific type of victim story. I also consider how, despite an emerging counter discourse that questions the data and challenges current policy, human trafficking discourse continues to be retold in media and reproduced in popular culture, often in ways that actually diverge from the current version of the grand narrative. In contrast to these uncritical representations, ethnographic data from Bosnia suggest that the master narrative is selective in how it represents the history of the problem and that it does not “take up” important details about the context that fosters sexual exploitation, despite Bosnia’s compliance with US policy. Conversely, Kazakhstan suffers a liminal status regardless of local efforts to prevent the problem from happening within its borders as well as evidence that the crime is not widespread. While perhaps not mythical, I suggest that the master narrative contains the stuff of legend as it occupies the critical spaces of policy, activism and development, leaving open the question of how to address the nuances and needs of responding to victims of gender violence.     

When Medical News Comes from Press Releases—A Case Study of Pancreatic Cancer and Processed Meat

The media have a key role in communicating advances in medicine to the general public, yet the accuracy of medical journalism is an under-researched area. This project adapted an established monitoring instrument to analyse all identified news reports (n = 312) on a single medical research paper: a meta-analysis published in the British Journal of Cancer which showed a modest link between processed meat consumption and pancreatic cancer. Our most significant finding was that three sources (the journal press release, a story on the BBC News website and a story appearing on the ‘NHS Choices’ website) appeared to account for the content of over 85% of the news stories which covered the meta analysis, with many of them being verbatim or moderately edited copies and most not citing their source. The quality of these 3 primary sources varied from excellent (NHS Choices, 10 of 11 criteria addressed) to weak (journal press release, 5 of 11 criteria addressed), and this variance was reflected in the accuracy of stories derived from them. Some of the methods used in the original meta-analysis, and a proposed mechanistic explanation for the findings, were challenged in a subsequent commentary also published in the British Journal of Cancer, but this discourse was poorly reflected in the media coverage of the story.     

Les fous morts brûlés. Cauchemar, fantasme et réalité de la médecine aliéniste (xix e-xx e siècles)

In the 19th century, there was much discussion about lunatic asylums. Since hydrotherapy was then a privileged cure for mental illness, there were stories about inmates who died literally fried in the so-called “continuous baths”, where they had been forgotten by neglectful members of staff. This paper aims to distinguish between truth and fantasy, through an analysis of patient testimonies, literature and medical discourse. The reader will discover that what was at the time considered fiction by many, just another dreadful story on madhouses, was in fact a reality, that some physicians such as Evariste Marandon de Montyel (1851–1908) tried to combat.     

Broken Brains and Broken Homes: The Meaning of Special Education in an Appalachian Community

In this article, I explore the meaning of disability within the everyday lives of Clear River third-grade students. The concept of a disability narrative is developed to explain how expert disability labels shape the experience of academic performance and failure. Previous studies of disability labeling have neglected the life of the label after it has become entextualized. I focus on how the layperson translates the technical language of experts into the moral language of everyday life.  [labeling, special education, narrative, discourse, cultural circulation]     

The challenges of bringing autologous HSP-based vaccines to commercial reality

Based on genetic diversity in the population, there is an expectation, born out by decades of experience, that a given drug or treatment will not be equally efficacious for all patients. While this fact cannot be avoided, with ever increasing knowledge of the drug's biological mechanism of action and the relationship between efficacy and the patient's genetic profile, more directed treatments, with greater potential for efficacy are becoming possible. For example, Herceptin, Genentech's antibody based treatment for HER2 positive metastatic breast cancer, is prescribed based on the results of a diagnostic test, the outcome of which is able to screen out patients who have no chance of responding to the treatment. At the extreme of tailoring medicines to those patients who will receive the greatest benefit, is an autologous, or patient specific approach. Oncophage, a cancer vaccine in late stage clinical trials, is designed to accommodate the unique genetic mutations underlying each patient's cancer. This chapter of the book presents the challenges involved in bringing autologous HSP-based vaccines to commercial reality based on the experiences gained to date in the clinical manufacture of Oncophage. Two guiding principles have dominated our efforts. First, only the product should be autologous. All processes should be standardized to the greatest extent possible. Second, maintaining complete segregation between patient samples at all steps of processing is paramount.     

Small-scale manufacturing of neoantigen-encoding messenger RNA for early-phase clinical trials

Messenger RNA (mRNA) has become a promising tool in therapeutic cancer vaccine strategies. Owing to its flexible design and rapid production, mRNA is an attractive antigen delivery format for cancer vaccines targeting mutated peptides expressed in a tumor—the so-called neoantigens. These neoantigens are rarely shared between patients, and inclusion of these antigens in a vaccine requires the production of individual batches of patient-tailored mRNA. The authors have developed MIDRIX^NEO, a personalized mRNA-loaded dendritic cell vaccine targeting tumor neoantigens, which is currently being evaluated in a phase 1 clinical study in lung cancer patients. To facilitate this study, the authors set up a Good Manufacturing Practice (GMP)-compliant production process for the manufacture of small batches of personalized neoantigen-encoding mRNA. In this article, the authors describe the complete mRNA production process and the extensive quality assessment to which the mRNA is subjected. Validation runs have shown that the process delivers mRNA of reproducible, high quality. This process is now successfully applied for the production of neoantigen-encoding mRNA for the clinical evaluation of MIDRIX^NEO. To the authors’ knowledge, this is the first time that a GMP-based production process of patient-tailored neoantigen mRNA has been described.     

Democratic Pedagogy and the Discourse of Containment

This article points to the application of a discourse of containment in pedagogical practice. Growing out of a containment culture that has its beginnings in Cold War domestic strategies, the discourse of containment limits democratic possibilities in our classrooms, producing and legitimating a culture that governs what can be said and who can speak. Drawing on the mythologized version of the Rosa Parks story and the current agenda of conservative cultural managers and news media to contain the story around September 11,1 analyze the stakes in the political struggle over the control of the production of meaning in our classrooms.     

Remaking the Self: Trauma, Teachable Moments, and the Biopolitics of Cancer Survivorship

As numerous scholars have noted, cancer survivorship is often represented in popular discourse as providing an opportunity for a physical, emotional, and spiritual makeover. However, this idea that cancer enables the self to be remade on all levels is also increasingly evoked in the field of psychosocial oncology. Exploring cancer survivorship as a biopolitical phenomenon, I focus on two concepts that have become central to understandings of the disease: the ??teachable moment?? and ??post-traumatic growth.?? Drawing primarily on representations of cancer survivorship in the clinical literature, I suggest that cancer is increasingly seen to present a unique opportunity to catalyze the patient??s physical and psychological development. In this framework, the patient can no longer be relied upon to transform him or herself: this change must be externally driven, with clinicians taking advantage of the trauma that cancer entails to kick-start the patient into action. Broadening my analysis to the concepts of ??trauma?? and ??development?? writ large, I go on to suggest that survivorship discourse seems to partake of a larger and relatively recent meta-narrative about development??both individual and societal??and the positive opportunity that trauma is seen to present to stimulate reconstruction on a grand scale.     

Power/Knowledge,Power/Ignorance: Forest Fires and the State in Mexico

For over a century the Mexican state has justified its control of forests by claiming that rural people are ignorant and destructive fire setters, in the face of abundant evidence to the contrary. Academic and popular stereotypes of the state have tended to assume that official power and knowledge go hand in hand. In an institutional ethnography ofthe Mexican environment agency, SEMARNAP, I. show how official ignorance is deployed both within and outside state forestry institutions, and how ignorance and complicity may be as important as knowledge in asserting state power. Rather than internalizing official fire discourse, rural people in Mexico learn to mouth polite fictions in their encounters with officials. I argue that the scholarship on governmentality derived from Foucault has uncritically internalized the link between power and knowledge. A closer attention to the production and translation of knowledge within state institutions leads to a more nuancedunderstanding of various forms of obscurity and ignorance which accompany official knowledge claims. This paper is drawn from my fieldwork and archival research in Mexico in the summer of 1998 and between April 2000 and August 2001.     

Integrate personalized medicine into clinical practice to improve patient safety

Medical practice is based on the experience of practitioners and on learned medical knowledge. This knowledge is based on studies of patient's population. Modern medicine is facing a variety of clinical forms and also variable patients’ responses to treatment. Pharmacogenomics has brought insights to this variability and has led to the development of personalized medicine. The adoption of personalized medicine is slowed down by a number of technical and methodology barriers. The concept of personalized medicine should not be only limited to genetics but must reuse all patient information to get the most suitable patient profile. In this paper we present a methodology for the integration of personalized medicine into clinical practice.     

Understanding the Fluid Nature of Personhood – the Ring Theory of Personhood

Familial determination, replete with its frequent usurping of patient autonomy, propagation of collusion, and circumnavigation of direct patient involvement in their own care deliberations, continues to impact clinical practice in many Asian nations. Suggestions that underpinning this practice, in Confucian‐inspired societies, is the adherence of the populace to the familial centric ideas of personhood espoused by Confucian ethics, provide a novel means of understanding and improving patient‐centred care at the end of life. Clinical experience in Confucian‐inspired Singapore, however, suggests that personhood is conceived in broader terms. This diverging view inspired a study of local conceptions of personhood and scrutiny of the influence of the family upon it. From the data gathered, a culturally appropriate, clinically relevant and ethically sensitive concept of personhood was proposed: the Ring Theory of Personhood (Ring Theory) that better captures the nuances of local conceptions of personhood. The Ring Theory highlights the fact that, far from being solely dependent upon familial centric ideals, local conceptions of personhood are dynamic, context dependent, evolving ideas delineated by four dimensions. Using the Ring Theory, the nature of familial influences upon the four dimensions of personhood – the Innate, Individual, Relational and Societal – are examined to reveal that, contrary to perceived knowledge, conceptions of personhood within Confucian societies are not the prime reason for the continued presence of this decision‐making model but remain present within local thinking and practices as a sociocultural residue and primarily because of inertia in updating ideas.     

The effect of leucovorin on the therapeutic index of fluorouracil in cancer patients

Fluorouracil has been in clinical use as an anticancer drug for 30 years. Although this drug has a broad spectrum of anticancer activity, including significant activity against the common solid tumors of the gastrointestinal system, only a minority of patients treated with fluorouracil experience an objective response to therapy. Furthermore, in randomized clinical trials completed to date, it has not been possible to demonstrate that fluorouracil therapy significantly prolongs the life span of patients with advanced cancer. Recent laboratory studies have indicated that leucovorin can enhance the cytotoxicity of fluorouracil in vitro, evidently by enhancing inhibition of the key enzyme, thymidylate synthetase, by the fluorouracil metabolite, FdUMP (fluorodeoxyuridine monophosphate; a stable inactive FdUMP-reduced folate-thymidylate synthetase complex is formed). Pilot, uncontrolled studies of leucovorin-fluorouracil combinations have suggested that leucovorin may significantly increase both the clinical efficacy and the clinical toxicity of fluorouracil in cancer patients. These findings have led to the initiation of several randomized, controlled studies of leucovorin plus fluorouracil versus fluorouracil alone in the treatment of patients with advanced colorectal cancer. Three of these studies have recently completed patient accrual, and the preliminary results of each of the three studies indicate that leucovorin-fluorouracil combinations will have a better therapeutic index than fluorouracil used alone in this disease. Further follow-up of these studies will be needed to determine whether leucovorin-fluorouracil combination therapy will prolong the life span of patients with colorectal cancer.     

Risk,parental autonomy and the epistemic divide: preimplantation genetic diagnosis in the Australian print news media, 1990–2007

Preimplantation genetic diagnosis (PGD) is a reproductive/genetic technology which has become the subject of public and scholarly debate because it involves the evaluation and consequent selection (and implantation) or destruction of human embryos. This research investigates the way PGD is constituted in the Australian print news media. Foucauldian discourse analysis reveals that proponents draw on their direct knowledge and experience of PGD to support their claims. There is an epistemic divide between consumers and others claiming direct knowledge, and critics and others drawing on indirect or abstract understandings of PGD. This divide characterizes the discourses present in the data and is directly linked to changes in these over the period under analysis.     

Increased radiation toxicity with germline ATM variant of uncertain clinical significance

BackgroundWhile patients with ataxia telangiectasia are known to have increased radiation sensitivity, patients with germline heterozygous ataxia telangiectasia mutated (ATM) mutations can have widely varying functional and clinical effects, which can make management decisions difficult. With an increased prevalence of gene panel-based testing for breast cancer patients, radiation oncologists are increasingly confronted with patients who carry germline ATM variants of uncertain clinical significance. This study describes the clinical courses and outcomes of 5 breast cancer patients with varying germline heterozygous ATM mutations undergoing radiation therapy at our institution in order to provide additional knowledge of the varying clinical effects to aid future decision making.Case SeriesWe identified 5 patients with breast cancer and varying germline heterozygous ATM mutations treated at the University of North Carolina Hospitals between 2015 and 2017. The median age at breast cancer diagnosis for the patient series was 46. Clinical effects of radiation treatment varied amongst the 5 patients. The one patient with a pathogenic ATM mutation had no increased radiation related toxicity. Of the 4 patients with ATM variants of uncertain significance, one patient had increased radiation sensitivity with Grade 3 dermatitis. All patients have remained recurrence free with a median duration of 18 months.ConclusionOur data illustrates that patients with germline heterozygous ATM mutations can have widely varying clinical effects with radiation therapy. Given the possibility of unpredictable deleterious effects, our study highlights the importance of caution and careful consideration when devising the multi-modality management strategy in these patients.