Rereading a canonic book in medical humanities can generate an immediate sense of how much has changed in the larger conversations still circulating around the issues that book broached in significant ways. The appearance in 2013 of the second edition of Arthur Frank's The Wounded Storyteller, first published in 1995, prompted me to review what has happened in the field of body studies in the intervening decades. Some developments point to the continuing importance of Frank's book, and others raise productive (...) questions about its limitations. (shrink)

As the recent Ebola outbreak demonstrates, visibility is central to the shaping of political, medical, and socioeconomic decisions. The symposium in this issue of the Journal of Bioethical Inquiry explores the uneasy relationship between the necessity of making diseases visible, the mechanisms of legal and visual censorship, and the overall ethics of viewing and spectatorship, including the effects of media visibility on the perception of particular “marked” bodies. Scholarship across the disciplines of communication, anthropology, gender studies, and visual studies, as (...) well as a photographer’s visual essay and memorial reflection, throw light on various strategies of visualization and legitimation and link these to broader socioeconomic concerns. Questions of the ethics of spectatorship, such as how to evoke empathy in the representation of individuals’ suffering without perpetuating social and economic inequalities, are explored in individual, national, and global contexts, demonstrating how disease visibility intersects with a complex nexus of health, sexuality, and global/national politics. A sensible management of visibility—an “ecology of the visible”—can be productive of more viable ways of individual and collective engagement with those who suffer. (shrink)

“Remembering Stephanie” by Charlee Brodsky is part of the symposium “Disease, Communication, and the Ethics of Visibility” published in the 11 issue of the Journal of Bioethical Inquiry and guest edited by Martha Stoddard Holmes and Monika Pietrzak-Franger. Although this article was included in the print version of the journal, in error it was not published online or included in the table of contents for the symposium. We republish it in the 12 issue of the Journal of (...) Bioethical Inquiry for these reasons.Additionally, the article “Documenting Women’s Postoperative Bodies: Knowing Stephanie and ‘Remembering Stephanie’ as Collaborative Cancer Narratives” by Mary K. DeShazer, which was published in the 11 symposium and is available at DOI 10.1007/s11673-014-9582-8, comments on and makes direct reference to “Remembering Stephanie” by Charlee Brodsky. (shrink)

The fields of medical ethics, bioethics, and women's studies have experienced unprecedented growth in the last forty years. Along with the rapid pace of development in medicine and biology, and changes in social expectations, moral quandaries about the body and social practices involving it have multiplied. Philosophers are uniquely situated to attempt to clarify and resolves these questions. Yet the subdiscipline of bioethics still in large part reflects mainstream scholars' lack of interest in gender as a category of analysis. This (...) volume aims to show how a feminist perspective advances bioethics. The author uncover inconsistencies in traditional arguments and argue for the importance of hitherto ignored factors in decision-making. The essays include theory and very specific examples that demonstrate the glaring inadequacy of mainstream bioethics, where gender bias is still often to be found, along with general lack of attention to women's concerns. (shrink)

Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of (...) three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks. (shrink)

As an ethicist trained in narrative, I wondered what I could offer Dr. Darcy at this point, two weeks after the events he described. And what might I have offered those involved if they had called an ethics consult at the time? One of this physician's implicit questions was, “How might this have unfolded in a better way?”When difficult choices must be made, how can a narrative approach help? A narrativist focuses less on principles, rules, and law than would a (...) philosopher or a lawyer. This is not to say that we ignore the law or are unaware of bioethical principles. But where do we go from there? Narrative offers a mode of engagement that asks different kinds of questions than those that law or philosophy might ask about moral agency, context, and values. (shrink)

ExcerptThe reasons why individual nations and even individual people subscribe to notions of human rights vary enormously. Rationales range from idealism to realpolitik and sound in competing registers of theology, social contract, nature, utility, and game theory.1 Pervasive in discussions of human rights is the dignity of each person as both a reality and a normative guide. Capacious and ambiguous, this notion of dignity may invite agreement precisely because different people project different meanings onto it. Its recognition, though, can inspire (...) attitudes of respect and civility even when we disagree. Dignity thus serves less as a foundation and more as a lodestar, an aspiration. Justice Thurgood Marshall once explained, “A child born to a [B]lack mother in a state like Mississippi… has exactly the same rights as a white baby born to the wealthiest person in the United States. It’s not true, but I challenge anyone to say it is not a goal worth working for.”2. (shrink)

Obtaining consent for medical treatment in older adults raises a number of complex challenges. Despite being required by ethics and the law, consent for medical treatment is not always validly sought in this population. The dynamic nature of capacity, particularly in individuals who have dementia or other cognitive impairments, adds complexity to obtaining consent. Further challenges arise in ensuring that older people comprehend the medical treatment information provided and that consent is not vitiated by coercion or undue influence. Existing mechanisms (...) to address issues surrounding consent for older adults only address incapacity and raise further challenges. As the ageing population increases, these issues are likely to become more profound, thus action is required to address these challenges. Raising awareness, more education, engaging with people with dementia, and conducting further research would assist in beginning to overcome these challenges. (shrink)

Group sex among men who have sex with men may be understood as a ‘radical’ practice insofar as it transgresses dominant social discourses around appropriate sexual relations—prioritizing heteronormative, monogamous and risk‐averse sex. These practices are generally defined as steeped in risk, most commonly due to the potential for transmitting human immunodeficiency virus and sexually transmitted infections and accompanied by the possibility of legal and social repercussions. Our ethnographic research study explored the desires, practices and contexts of group sex participants (n (...) = 10) within a popular group sex party destination located in the United States. We employ a poststructuralist perspective (utilizing the work of Deleuze and Guattari) to understand group sex events with the pretext that bodies have no inherent ethics, meaning or essence: they are ‘bodies without organs’. We identify group sex as a form of boundary play, in which participants pursue new limits to what their bodies can do but within a carefully constructed environment that establishes norms of interaction meant to secure trust and safety between participants. A variety of risk reduction practices are shown to be promoted and honoured within these eventful sexual(ized) spaces. The application of poststructuralist concepts of ‘boundary play’ and ‘bodies without organs’ helped to depict the construction and navigation of pleasure, safety and risk among group sex participants. (shrink)

This paper deals with how telematic technologies such as the cellular phones, Internet, telerobotics and other varieties of telematic communication and control are placing into discussion the nature of knowledge and its scope. These technologies offer us knowledge by description and representation instead of physical contact, a fact that is often seen with suspicion since they are perceived as technologies of delusion in a culture characterized by its conspicuous materialism. What are the possible roles for our mediated activities in relation (...) with the comprehension of our environment and the construction of subjectivity? Telematic mediation necessarily deals with the immaterial aspects of technologies such as the changing concepts of reality and nature, future possibilities of an ethereal afterlife achieved through spiritual or technological means and the concept of distance that can render mediated communication delusory and unsatisfying while acting as an agent of delocalization. This view is supported by our traditional Platonic view that perceives representation of things as a palpable degradation while neglecting the constructive aspects of those fictional endeavours. (shrink)

Beginning with this issue, the "Review Essays" section of the journal has been renamed "Critical Assessments." The new name more accurately describes not only the content of the section but also the journal's methods of assessment. Submissions to the section are peer reviewed; published essays are catalogued and indexed like the rest of the content of Perspectives in Biology and Medicine.Where many journals publish reviews on the assets and liabilities of newly published books, the Critical Assessments section of Perspectives in (...) Biology and Medicine aims for robust, engaging essays, written in an informal style about important new books, and also about important new articles. Books are a typical means of publishing... (shrink)

In the summer of 2017, much of the world was riveted by the case of Charlie Gard, a baby in London whose parents wanted an experimental treatment and whose doctors thought that further treatment would be futile. The case worked its way through the British courts and, eventually, was even heard by the European Court of Human Rights. Pope Francis and President Trump weighed in. If nothing else, the case revealed how controversial the issues around medical futility and shared decision-making (...) still are. Many ethical issues resolve over time. Discussions about disagreements lead to discovery of common ground. That doesn’t seem to be the case with the issue of medical futility and, particularly, with... (shrink)

If you travel through airports, you can’t help but notice it. Jodi Picoult’s novels are everywhere. From Charlotte to Kansas City to Los Angeles, airport bookstores are consistently stocked with three or four or more of her most recent heavy volumes of fiction. Read one and you might mutter that it seems designed for a relatively mindless flight from one coast to the other. Read several and you might agree with National Public Radio’s disparaging view that the books are “lurid (...) tales of family strife . . . garnished heavily with medical jargon, legalese, and a punitive finger pointed at a mother.” It’s not hard to find negative comments about Picoult’s novels. Janet Maslin, writing for the New York .. (shrink)

At the centenary of Frank H. Knight’s Risk, Uncertainty, and Profit (1921), we explore the continuing relevance of Knightian uncertainty to the theory and practice of entrepreneurship. There are three challenges facing such assessment. First, RUP is complex and difficult to interpret. The key but neglected element of RUP is that Knight’s account is not solely about risk and uncertainty as states of nature, but about how an agent’s beliefs about uncertain outcomes and confidence in those beliefs guide their choices. (...) Second, RUP is Knight’s only effort in this area. His subsequent career led elsewhere, so he did not engage with subsequent interpretations of this work. Third, much of the current literature emphasizes that decisions must be different under the two states of nature with a consequent misunderstanding of entrepreneurial agency. This paper addresses each challenge in sequence. First, we explicate Knight’s (1921) approach and explain why that approach is murky. Second, as a complement to Knight’s interpretation, we examine Frank P. Ramsey’s approach to subjective probabilities to help clarify Knight’s murky approach. What links Knight and Ramsey is a shared pragmatism about entrepreneurial agency under uncertainty that depends upon the beliefs about, and confidence in, their judgments of possible outcomes. This Knight-Ramsey approach does not require actor’s behaviors to be determined by the class of uncertain environment (whether risk, uncertainty, or ambiguity) they face. We focus on the response by the entrepreneur to the existence of uncertainty in all its forms. We argue that this reductive account provides a foundation to examine common problems in management, including managerial hubris, the interaction between entrepreneurs and venture capitalists, and the need for experimentation (such as prototyping and market research) in advance of new product and venture launches. Third, we critique current literature that favors epistemic purism about the ontology of risk and uncertainty and ignores Knight-Ramsey pragmatism in meeting uncertainty, such as using formal and informal institutions for uncertainty mitigation. Our account locates Frank Knight’s subtleties in entrepreneurial behavior firmly in the literature on entrepreneurial agency a century later. (shrink)

In the mid-nineteenth century, the house sparrow ( Passer domesticus) was introduced to the United States, quickly spreading across the country. For a brief period in the late nineteenth and early twentieth centuries, the observation of sparrow behavior was something of an urban pastime. Traits such as intelligence, reason, persistence, and craftsmanship were conferred onto sparrows by American urbanites. This paper argues that sparrow intelligence was often conflated with domestication: the ability of the birds to adapt to living alongside humans. (...) Praise for the ingenuity of sparrows generally revolved around their nest building, particularly when such structures overcame the challenges posed by urban infrastructure and technology. Sparrows were far less praiseworthy when they caused electricity outages or contaminated water supplies. The sparrow in the United States demonstrates how the relationship between these anecdotes and their implications for animal minds was mediated by the technology and infrastructure of cities. Admirers of sparrows were not measuring the birds’ mental capacity, but rather their ability to adapt to human habitations. Sparrows were only granted intelligence once they had demonstrated their ability to become domesticated. (shrink)

_ _ _Environmental Ethics: An Anthology_ brings together both classic and cutting-edge essays which have formed contemporary environmental ethics, ranging from the welfare of animals versus ecosystems to theories of the intrinsic value of nature.

An ω-model (a model in which all natural numbers are standard) of the predicative fragment of Quine's set theory "New Foundations" (NF) is constructed. Marcel Crabbe has shown that a theory NFI extending predicative NF is consistent, and the model constructed is actually a model of NFI as well. The construction follows the construction of ω-models of NFU (NF with urelements) by R. B. Jensen, and, like the construction of Jensen for NFU, it can be used to construct α-models for (...) any ordinal α. The construction proceeds via a model of a type theory of a peculiar kind; we first discuss such "tangled type theories" in general, exhibiting a "tangled type theory" (and also an extension of Zermelo set theory with Δ 0 comprehension) which is equiconsistent with NF (for which the consistency problem seems no easier than the corresponding problem for NF (still open)), and pointing out that "tangled type theory with urelements" has a quite natural interpretation, which seems to provide an explanation for the more natural behaviour of NFU relative to the other set theories of this kind, and can be seen anachronistically as underlying Jensen's consistency proof for NFU. (shrink)

Many metaphor theorists argue that our mental experience of time is grounded in our understanding of space, including motion through space. Results from recent experiments – in which people think about motion, which in turn influences their thinking about time – support this position. Still, many questions remain about the nature of the metaphorical connection between time and space. Can the mere suggestion of motion influence how people reason about time, and if so, when and how? Three experiments investigated how (...) thinking about “abstract” motion through sequences of numbers or letters would influence reasoning about time. Our results extend earlier psychological work on the link between time and space by showing that even motion in non-physical domains can influence temporal reasoning. The results provide further evidence that metaphorical understanding is grounded in our everyday physical and conceptual experience. (shrink)

This article argues that the mid-1960s saw a dramatic shift in how ‘brainwashing’ was popularly imagined, reflecting Anglo-American developments in the sciences of mind as well as shifts in mass media culture. The 1965 British film The Ipcress File provides a rich case for exploring these interconnections between mind control, mind science and media, as it exemplifies the era’s innovations for depicting ‘brainwashing’ on screen: the film’s protagonist is subjected to flashing lights and electronic music, pulsating to the ‘rhythm of (...) brainwaves’. This article describes the making of The Ipcress File’s brainwashing sequence and shows how its quest for cinematic spectacle drew on developments in cybernetic science, multimedia design and modernist architecture. I argue that often interposed between the disparate endeavours of 1960s mind control, psychological science and media was a vision of the human mind as a ‘cybernetic spectator’: a subject who scrutinizes how media and other demands on her sensory perception can affect consciousness, and seeks to consciously participate in this mental conditioning and guide its effects. (shrink)

At the centenary of Frank H. Knight’s Risk, Uncertainty, and Profit, we explore the continuing relevance of Knightian uncertainty to the theory and practice of entrepreneurship. There are three challenges facing such assessment. First, RUP is complex and difficult to interpret. The key but neglected element of RUP is that Knight’s account is not solely about risk and uncertainty as states of nature, but about how an agent’s beliefs about uncertain outcomes and confidence in those beliefs guide their choices. Second, (...) RUP is Knight’s only effort in this area. His subsequent career led elsewhere, so he did not engage with subsequent interpretations of this work. Third, much of the current literature emphasizes that decisions must be different under the two states of nature with a consequent misunderstanding of entrepreneurial agency. This paper addresses each challenge in sequence. First, we explicate Knight’s approach and explain why that approach is murky. Second, as a complement to Knight’s interpretation, we examine Frank P. Ramsey’s approach to subjective probabilities to help clarify Knight’s murky approach. What links Knight and Ramsey is a shared pragmatism about entrepreneurial agency under uncertainty that depends upon the beliefs about, and confidence in, their judgments of possible outcomes. This Knight-Ramsey approach does not require actor’s behaviors to be determined by the class of uncertain environment they face. We focus on the response by the entrepreneur to the existence of uncertainty in all its forms. We argue that this reductive account provides a foundation to examine common problems in management, including managerial hubris, the interaction between entrepreneurs and venture capitalists, and the need for experimentation in advance of new product and venture launches. Third, we critique current literature that favors epistemic purism about the ontology of risk and uncertainty and ignores Knight-Ramsey pragmatism in meeting uncertainty, such as using formal and informal institutions for uncertainty mitigation. Our account locates Frank Knight’s subtleties in entrepreneurial behavior firmly in the literature on entrepreneurial agency a century later. (shrink)