Background: Low rates of participation of adolescents and young adults (AYAs) in clinical oncology trials may contribute to poorer outcomes. Factors that influence the decision of AYAs to participate in health research and whether these factors are different from those that affect the participation of parents of children with cancer. Methods: This is a secondary analysis of data from validated questionnaires provided to adolescents (>12 years old) diagnosed with cancer and parents of children with cancer at 3 sites in Canada (...) (Halifax, Vancouver, and Montreal) and 2 in the United States (Atlanta, GA, and Memphis, TN). Respondents reported their own research participation and cited factors that would influence their own decision to participate in, or to provide parental authorization for their child to participate in health research. Results: Completed questionnaire rates for AYAs and parents were 86 (46.5%) of 185 and 409 (65.2%) of 627, respectively. AYAs (n = 86 [67%]) and parents (n = 409 [85%]) cited that they would participate in research because it would help others. AYAs perceived pressure by their family and friends (16%) and their physician (19%). Having too much to think about at the time of accrual was an impediment to both groups (36% AYAs and 47% parents). The main deterrent for AYAs was that research would take up too much time (45%). Nonwhite parents (7 of 56 [12.5%]) were more apt to decline than white parents (12 of 32 [3.7%]; P < .01). Conclusions: AYAs identified time commitment and having too much to think about as significant impediments to research participation. Addressing these barriers by minimizing time requirements and further supporting decision-making may improve informed consent and impact on enrollment in trials. (shrink)

PURPOSE: There is an increasing demand for researchers to provide research results to participants. Our aim was to define an appropriate process for this, based on needs and attitudes of participants. METHODS: A multicenter survey in five sites in the United States and Canada was offered to parents of children with cancer and adolescents with cancer. Respondents indicated their preferred mode of communication of research results with respect to implications; timing, provider, and content of the results; reasons for and against (...) providing results; and barriers to providing results. RESULTS: Four hundred nine parents (including 19 of deceased children) and 86 adolescents responded. Most parents (n = 385; 94.2%) felt that they had a strong right to research results. For positive results, most wanted a letter or e-mail summary (n = 238; 58.2%) or a phone call followed by a letter (n = 100; 24.4%). If the results were negative, phone call (n = 136; 33.3%) or personal visits (n = 150; 36.7%) were preferred. Parents wanted the summary to include long-term sequelae and suggestions for participants (n = 341; 83.4%), effect on future treatments (n = 341; 83.4%), and subsequent research steps (n = 284; 69.5%). Understanding the researcher was a main concern about receiving results (n = 145; 35.5%). Parents felt that results provide information to support quality of life (n = 315; 77%) and raise public awareness of research (n = 282; 68.9%). Adolescents identified similar preferences. CONCLUSION: Parents of children with cancer and adolescents with cancer feel strongly that they have a right to be offered research results and have specific preferences of how and what information should be communicated. (shrink)

This book explores the pervasiveness of poetry's impact on philosophy and, conversely, how philosophy has sometimes resisted or denied poetry's influence.

ABSTRACT Objective: To identify perceived barriers to capacity building for local research ethics oversight in El Salvador, and to set an agenda for international collaborative capacity building. Methods: Focus groups were formed in El Salvador which included 17 local clinical investigators and members of newly formed research ethics committees. Information about the proposed research was presented to participants during an international bioethics colloquium sponsored and organized by the St. Jude Children's Research Hospital in collaboration with the National Ethics Committee of (...) El Salvador and the University of El Salvador. Interviews with the focus group participants were qualitatively analyzed. Results: Participants expressed the need to tailor the informed consent process and documentation to the local culture; for example, allowing family members to participate in decision‐making, and employing shorter consent forms. Participants indicated that economic barriers often impede efforts in local capacity building. Participants valued international collaboration for mutual capacity building in research ethics oversight. Conclusions: Research ethics committees in El Salvador possess a basic knowledge of locally relevant ethical principles, though they need more training to optimize the application of bioethical principles and models to their particular contexts. Challenges increase the value of collaborative exchanges with ethics committee members in the United States. Further research on facilitating communication between host country and sponsor country ethics committees can maximize local research ethics expertise, and thus raise the standard of protecting human participants involved in international research. (shrink)

Mechanistic studies may be defined as ‘an experiment, using an intervention in healthy subjects or patients, to better understand human biology and/or disease’. Such studies provide useful physiological insights into clinical conditions in humans and expand our knowledge of physiology in health and disease. Well-planned mechanistic studies are therefore a vital step in progressing drug discovery in humans. It is important in such studies that the rights and safety of research participants are preserved, while at the same time not allowing (...) lengthy and complex approval procedures to stifle and potentially prohibit this type of research. (shrink)

Anthropology's approach to answering the question of the role of suffering in our lives is limited to empirical data and at best describes an individual's capability to endure it and make sense of it. Levinas was at odds to find meaning in suffering once it had exceeded certain proportions. Various cultures demonstrate greater and lesser capacities for integrating corporate suffering when it has crossed a significant threshold. What is the role of ritual and productive suffering in revealing meaning in suffering? (...) Some examples are drawn from the experiences of pilgrims on the Camino de Santiago de Compostella. Drawing from Dr. Eleonore Stump's exploration of second-person narratives and relationships, a Christian philosophical-theological response is provided. (shrink)

For more than four decades, many Anglo-American philosophers have been held in thrall by a captivating metaphor, Quine's holistic image of the man-made fabric (or web) of knowledge and belief within which no statement is absolutely immune to revision. And many have been led to think that the following three distinctions are indefensible: (i) that between sentences and the propositions that they express; (ii) that between necessary and contingent propositions; and (iii) that between a priori and empirical knowledge.

In lieu of an abstract, here is a brief excerpt of the content:Peter McGehee and the Erotics of Gay Self-RepresentationRaymond-Jean Frontain (bio)Novelist Peter McGehee was a beautiful man who—at the height of what Brad Gooch terms “the Golden Age of Promiscuity”—knew he was a beautiful man.1 Coming of age in the early 1970s when American gay men consciously set about refashioning their image, Peter’s dress was always striking, whether he was playing the slut or the dandy. Members of his close (...) circle of friends, dubbed “the Quinlan Family,” regularly twitted him for preening in the mirror, and one close friend reports that Peter could not pass a reflective surface without stopping to examine his image.2 Peter’s narcissism was further empowered by his talent as a photographer. He began taking pictures while in high school when his mother, an English teacher who advised both the school newspaper and yearbook, recruited him to serve as the staff photographer for both publications. And he continued taking photos—in particular, making self-portraits—until at least his early thirties (see Illustration 1).3 Click for larger view View full resolution1.Self-portrait by Peter McGehee. The hairstyle is identical to the one in the portrait that appears on the cover of the Stubblejumper Press edition of Beyond Happiness, suggesting that this photo was taken around 1985 when Peter was twenty-nine or thirty years old. Courtesy of the Estate of Peter McGehee.[End Page 115] Click for larger view View full resolution2.Self-portrait by Peter McGehee in mascara and woman’s top, circa 1981. Courtesy of Fiji Robinson.It should not come as a surprise that McGehee’s life and career are characterized by an ongoing and extraordinarily rich experimentation with modes of self-presentation. Peter was adept at making wacky collages that employ photographs and images culled from newspapers or magazines to serve as invitations, announcements to friends, and handbills for his performance activities. Under carefully controlled circumstances, Peter and his male friends donned female drag with Peter fashioning for himself a persona, “Princess Marie,” and signing himself as the same in letters to friends written in the royal first-person plural (see Illustration 2). When performing as the only male with two female partners in the Quinlan Sisters, a musical revue that he founded and for which he wrote the songs, he was generally identified in the program as “Marie Quinlan, the Sister with the Difference” (see Illustration 3).Peter experimented with personae even in his journals, where one might expect to find a less theatricalized self. Beginning in 1986, however, numerous entries are composed as letters that begin “Dear Winsome” (a word defined by the American Heritage College Dictionary as “charming, often in a childlike or naive way”—a manner that Peter liked to adopt), “Dear Winnie” (which is most likely a familiarization of the former), “Dear Timmy” (a name synonymous with naive wholesomeness for American baby boomers who were raised watching the television drama Lassie on Sunday evenings), and the matronly and delightfully dowdy “Dear Mrs. Hackensack.”4 Like Joe Orton, McGehee apparently even wrote letters to the local newspaper under a matronly female pseudonym in which he commented wryly on public matters that concerned him.5 [End Page 116] Click for larger view View full resolution3.Publicity photograph of Peter with Wendy Coad and Fiji Robinson as the Quinlan Sisters, circa 1982. Courtesy of Fiji Robinson.But clearly it was his fiction that offered McGehee the most satisfying opportunity for creative self-fashioning. It is the first rule of the creative writing class that a writer must write from, and of, what he knows if his writing is to have authority. But in his blurring of the line between fiction and autobiography Peter followed the lead established by Christopher Isherwood in The Berlin Stories (1935–39) and, more importantly, Christopher and His Kind (1976)—and pursued by Peter’s senior contemporaries Edmund White and Felice Picano—in which the autobiographer writes of himself in the third person in order to study himself with an almost brutal detachment, or in which the fictional protagonist is a barely disguised version of the writer’s self to the point of... (shrink)

In the mid-nineteenth century, healthcare delivery began transitioning from an individual, private payment model to a third-party payment model, dominated by the insurance industry. During the same time, productivity shifted from a transformational model, centered on the provider-patient relationship, to a transactional model, based on the distribution of services. The emergence of medical insurance and other third-party payers removed providers and patients from discussions about treatment plans, payment, and risk. This resulted in a weakening, if not fracturing, of the provider-patient (...) relationship. All healthcare providers enter their profession to care for people, yet what has most frequently been lost in the transformed relationship over the past century is context, communication, and trust—all elements of a relational ethic, or what ethicist and psychologist Carol Gilligan first described as, “the ethics of care.” This loss of relationality has led to a model of healthcare delivery that is fractured, isolated, and uncoordinated, with an epidemic of medical errors that by some estimates results in the death of approximately 400,000 individuals per year. Thus far, isolated foci on patient quality, outcomes, and safety have been feckless and unimpressive. However, new advanced payment models, such as value-based purchasing and patient-centered medical homes, have the potential to reduce medical error by addressing its root cause. In linking payment to factors such as context, communication, and trust, they bring relationality back into the healthcare system. This essay traces the historic devolution of the provider-patient relationship and the promise of new payment models to restore it. (shrink)

The task of finding art in the world is presented as a tale of three dynamic forces that have shaped art in recent times. The first is expansion of the domain of art. This is reflected in linguistic change. The term "art" has grown enormously in sense and extension. The second force is the public's subjective response to art writ large. Our commercial culture compels reaction. The third force is the art world's active promotion of the expansion of art's domain (...) and the contextualization of the public's subjective response to it. The aspiration of the paper is to bring some clarity to how we presently identify art, respond to it, understand it, and institutionalize it. The tale concludes with discussion of the future of art in the world today. (shrink)