In this landmark Companion, expert contributors from around the world map out the field of the critical medical humanities. This is the first volume to comprehensively introduce the ways in which interdisciplinary thinking across the humanities and social sciences might contribute to, critique and develop medical understanding of the human individually and collectively. The thirty-six newly commissioned chapters range widely within and across disciplinary fields, always alert to the intersections between medicine, as broadly defined, and critical thinking. Each chapter offers (...) suggestions for further reading on the issues raised, and each section concludes with an Afterword, written by a leading critic, outlining future possibilities for cutting-edge work in this area. (shrink)

Although it is commonplace for political scientists to draw upon historical thinkers and the ‘great books’ of the past, the practice of using historical works as reference points for contemporary issues remains under-investigated. To address this practice, this article is positioned at the crossroads of social science and intellectual history. By examining the relationship of political economists Elinor and Vincent Ostrom with Alexis de Tocqueville, the article demonstrates some of the potential risks incurred by social scientists drawing on historical thinkers. (...) After exploring the similarities between the Ostroms and Tocqueville, it identifies three key pitfalls of the Ostroms’ ‘Tocquevillian’ rhetoric. These pitfalls result in obscuring meaning and overlooking philosophical insights, both of which detract from the Ostroms’ project. Insights from the field of intellectual history are offered. A final section presents a key example of Vincent Ostrom overlooking Tocqueville's thought where Tocqueville's insights were directly applicable to his work. The article parses political science's relationship with the past and offers a critique that is applicable beyond Tocqueville and the Ostroms. (shrink)

An introduction to the paragone -- The archetype of beauty : Narcissus and the birth of the beau idéal -- Pygmalion and Galatea : the battle between iconophobes and iconodules -- Salomé versus Medusa.

In this article I set out to trace some of the implications of recharging the political potency of nature in more-than-human terms. This shifts attention from a biopolitical focus on the inventiveness of the life sciences and what this means in terms of the emergence of ‘cyborg’ political subjects to an onto-political focus on the inventiveness of knowledge controversies and what these mean for techno-political practices. Specifically, the article examines the onto-politics of ‘natural’ hazard events and their capacity to force (...) thought in those affected by them, and so to place new demands on research practices in terms of rendering such events affective and amenable to political interrogation. I work these arguments through the demanding experimental ethos of the philosopher Isabelle Stengers, for whom scientific practices produce reliable knowledge claims only in so far as the questions they address are at risk of being redefined by the phenomena mobilized in them, and who extends this ethos to elaborate an understanding of, even a test for, an adequate political theory and practice. I do so with reference to a recent research experiment in which I collaborated with social and natural scientists and people affected by flooding in the UK. (shrink)

Importance Informed consent is essential to ethical, rigorous research and is important to recruitment and retention in cancer trials.Objective To examine cancer clinical trial (CCT) participants’ perceptions of informed consent processes and variations in perceptions by cancer type.Design and Setting and Participants Cross-sectional survey from mixed-methods study at National Cancer Institute–designated Northeast comprehensive cancer center. Open-ended and forced-choice items addressed: (1) enrollment and informed consent experiences and (2) decision-making processes, including risk-benefit assessment. Eligibility: CCT participant with gastro-intestinal or genitourinary, hematologic-lymphatic (...) malignancies, lung cancer, and breast or gynecological cancer (N = 334).Main Outcome Measures Percentages satisfied with consent process and information provided; and assessing participation’s perceptions of risks/benefits. Multivariable logistic or ordinal regression examined differences by cancer type.Results Most patient-participants felt well informed by the consent process (more than 90% overall and by cancer type) and. most (87.4%) reported that the consent form provided all the information they wanted, although nearly half (44.8%) reported that they read the form somewhat carefully or less. More than half (57.9%) said that talking to research staff (i.e., the consent process) had a greater impact on participation decisions than reading the consent form (2.1%). A third (31.1%) were very sure of joining in research studies before the informed consent process (almost half of lung cancer patients did—47.1%). Most patients personally assessed the risks and benefits before consenting. However, trust in physicians played an important role in the decision to enroll in CCT.Conclusions and Relevance Cancer patients rely less on written features of the informed consent process than on information obtained from the research staff and their own physicians. Research should focus on information and communication strategies that support informed consent from referring physicians, researchers, and others to improve patient risk-benefit assessment and decision-making. (shrink)

Canada is six years into a new era of legalized medical assistance in dying (MAiD). The law continues to evolve, following a pattern in which Canadian courts rule that legal restrictions on eligibility for MAiD are unconstitutional and Parliament responds by gradually expanding eligibility for MAiD. The central tension underlying this dialogue between courts and government has focused on two conceptions of how to best promote and protect the interests of people who are vulnerable by virtue of intolerable and irremediable (...) suffering due to an illness, disease, or disability. Do we, as a society, have a duty to protect vulnerable people from seeking certain medical procedures that are contrary to their interests, as those are perceived by others? Or do we have a duty to uphold their rights to autonomy, including the right to make choices within a range that may be constrained by many factors, some of which may be socially unjust? This is a recurrent problem in bioethics and medical law, which we explore through the lens of how Canadian courts and Parliament have grappled with defining eligibility for MAiD. (shrink)

As the usual regulatory framework did not fit well during the last Ebola outbreak, innovative thinking still needed. In the absence of an outbreak, randomised controlled trials of clinical efficacy in humans cannot be done, while during an outbreak such trials will continue to face significant practical, philosophical, and ethical challenges. This article argues that researchers should also test the safety and effectiveness of novel vaccines in wild apes by employing a pluralistic approach to evidence. There are three reasons to (...) test vaccines in wild populations of apes: i) protect apes; ii) reduce Ebola transmission from wild animals to humans; and iii) accelerate vaccine development and licensing for humans. Data obtained from studies of vaccines among wild apes and chimpanzees may even be considered sufficient for licensing new vaccines for humans. This strategy will serve to benefit both wild apes and humans. (shrink)

Current orthodoxy in research ethics assumes that subjects of clinical trials reserve rights to withdraw at any time and without giving any reason. This view sees the right to withdraw as a simple extension of the right to refuse to participate all together. In this paper, however, I suggest that subjects should assume some responsibilities for the internal validity of the trial at consent and that these responsibilities should be captured by contract. This would allow the researcher to impose a (...) penalty on the subject if he were to withdraw without good reason and on a whim. This proposal still leaves open the possibility of withdrawing without penalty when it is in the subject's best interests to do so. Giving researchers recourse to legal remedy may now be necessary to protect the science, as existing methods used to increase retention are inadequate for one reason or another. (shrink)

Most ethics committees which review research protocols insist that potential research participants reserve unconditional or absolute ‘right’ of withdrawal at any time and without giving any reason. In this paper, I examine what consent means for research participation and a sense of commitment in relation to this right to withdraw. I suggest that, once consent has been given (and here I am excluding incompetent minors and adults), participants should not necessarily have unconditional or absolute rights to withdraw.This does not imply (...) that that there should be a complete absence of rights, or, indeed, an abandonment of the right to withdraw. The point of this paper is to show that the supposed unconditional or absolute nature of these rights may be self‐defeating and so fail to respect the autonomy of participants. In addition, and on a more positive note, I suggest that, attaching certain conditions on the right to withdraw, may better respect the autonomy of these participants by underlining the idea that autonomy is more than mere whim or indifference to the fate of others. On the contrary, research staff are currently unable to ‘push’ participants, who may merely have logistical difficulties unrelated to the research itself, but who really want to stay the course, for fear of coercing them. Furthermore, researchers now try to ‘screen out’ people they think may be unreliable to protect the science of the study and so groups at risk of dropping out may be unfairly denied access to research treatments. I conclude that on‐going negotiation between the relevant parties could be on balance the only truly acceptable way forward but concede certain important limitations to take into account. (shrink)

ABSTRACT In this paper, I support the claim that placing certain restrictions on public access to possible new treatments is morally problematic under some exceptional circumstances. Very ill patients may find that all available standard treatments are unacceptable, either because they are ineffective or have serious adverse effects, and these patients may understandably be desperate to try something new even if this means stepping into the unknown. Faced with certain death, it is rational to want to try something new and (...) to chance a dire outcome. Restricting possible new treatments to research trials may put these treatments scientifically, geographically or economically out of reach of these patients. For those who can get access, research restrictions could weaken, though not necessarily eliminate, the value of consent participants of such trials are able to give. Some participants may therefore be exploited for scientific purposes in the name of public interest. There are nonetheless compelling reasons for keeping some restrictive regulation in this area. (shrink)

This is the first in a series of five papers on the role, remit and function of research ethics committees which are intended to provide for REC members a broad understanding of the most important issues in research ethics and governance. The first considers the rationale for having ethics review by committee at all; seeking to explain why ethics committees, as we currently have them, are so important to the wider system of governing research.

The rapid and dynamic nature of digital transformation challenges companies that wish to develop and deploy novel digital technologies. Like other actors faced with this transformation, companies need to find robust ways to ethically guide their innovations and business decisions. Digital ethics has recently featured in a plethora of both practical corporate guidelines and compilations of high-level principles, but there remains a gap concerning the development of sound ethical guidance in specific business contexts. As a multinational science and technology company (...) faced with a broad range of digital ventures and associated ethical challenges, Merck KGaA has laid the foundations for bridging this gap by developing a Code of Digital Ethics (CoDE) tailored for this context. Following a comprehensive analysis of existing digital ethics guidelines, we used a reconstructive social research approach to identify 20 relevant principles and derive a code designed as a multi-purpose tool. Versatility was prioritised by defining non-prescriptive guidelines that are open to different perspectives and thus well-suited for operationalisation for varied business purposes. We also chose a clear nested structure that highlights the relationships between five core and fifteen subsidiary principles as well as the different levels of reference—data and algorithmic systems—to which they apply. The CoDE will serve Merck KGaA and its new Digital Ethics Advisory Panel to guide ethical reflection, evaluation and decision-making across the full spectrum of digital developments encountered and undertaken by the company whilst also offering an opportunity to increase transparency for external partners, and thus trust. (shrink)

This is the third in a series of five papers on the role, remit and function of research ethics committees which are intended to provide for REC members a broad understanding of the most important issues in research ethics and governance. This paper examines the role of ethics committees in balancing the social value of the research it reviews against the risks it imposes on those who take part. The ethics committee's role in assessing the social value of research goes (...) well beyond checking its scientific validity and this assessment may affect the risks ethics committees are prepared to ask of subjects not only for their own potential personal interests but importantly and inevitably in the name of science. However, their function is importantly restricted by the wider regulatory and governance environment in which they work. (shrink)

Alfandre et al. helpfully outlines the case for attending to contingency planning as well as to crisis measures during a pandemic. The authors provides a helpful framework for reflecting on...

The American Journal of Bioethics, Volume 12, Issue 6, Page 35-37, June 2012.

Volume 20, Issue 9, September 2020, Page 39-41.

Olfaction has recently been highlighted as a sense poorly connected with language. Odor is difficult to verbalize, and it has few qualities that afford mimicry by vision or sound. At the same time, emotion is thought to be the most salient dimension of an odor, and it could therefore be an olfactory dimension more easily communicated. We investigated whether sounds imitative of an innate disgust response can be associated with unpleasant odors. In two experiments, participants were asked to make a (...) forced choice between a pseudoword including a disgust sound and a neutral pseudoword, for pleasant and unpleasant odors. Overall, participants chose more disgust pseudowords than neutral pseudowords for unpleasant odors, but this was not the case for pleasant odors. This effect was not driven by a general association between unpleasant sounds and unpleasant odors, but specifically the sounds [x/χ] and [f], thought to reflect physical responses to disgusting odors, as seen in the Polish fu! or the English ugh!. In line with growing evidence that language can encode odor, we provide the first experimental evidence for an association between the sound of a word and odor valence. (shrink)

It has been consistently demonstrated that fear-relevant images capture attention preferentially over fear-irrelevant images. Current theory suggests that this faster processing could be mediated by an evolved module that allows certain stimulus features to attract attention automatically, prior to the detailed processing of the image. The present research investigated whether simplified images of fear-relevant stimuli would produce interference with target detection in a visual search task. In Experiment 1, silhouettes and degraded silhouettes of fear-relevant animals produced more interference than did (...) the fear-irrelevant images. Experiment 2, compared the effects of fear-relevant and fear-irrelevant distracters and confirmed that the interference produced by fear-relevant distracters was not an effect of novelty. Experiment 3 suggested that fear-relevant stimuli produced interference regardless of whether participants were instructed as to the content of the images. The three experiments indicate that even very simplistic images of fear-relevant animals can divert attention. (shrink)

I explicate the distinction between ethics and morality in terms of four central contrasts, and argue (1) that moral theories that embrace the implicit divide are both theoretically and practically problematic in their failure to meet certain widely accepted standards of theoretical coherence and in their resulting propensity to generate indeterminable conflicts among norms, and (2) that social roles represent one aspect of the moral life that cannot be understood in terms of this distinction. My suggestion will be that we (...) ought to explore an interpretation of the moral realm according to which all moral attributes are relative to social roles, since a role-centered morality promises a way of overcoming this problematic divide. (shrink)

This is the fourth in a series of five papers on the role, remit and function of research ethics committees which are intended to provide for REC members a broad understanding of the most important issues in research ethics and governance. This paper explores the role of ethics committees in reviewing proposed conditions for recruiting human subjects and in checking the intended procedures for gaining consent. In so doing the paper will reiterate the conditions which are traditionally thought to make (...) consent valid, identify a number of limitations to meeting these conditions, and show when consent, however broadly construed or indeterminately focused, may be unnecessary. (shrink)

This is the second in a series of five papers on the role, remit and function of research ethics committees which are intended to provide for REC members a broad understanding of the most important issues in research ethics and governance. This paper examines the role of ethics committees in assessing the science of the research it reviews. While ethics committees are not specifically constituted to review the science of a project, they must nevertheless assess the social benefits of research (...) and, in this context, have an important role in checking that the science has been properly peer-reviewed. (shrink)

This study investigates the hypothesis that the advantage corporate social performance (CSP) yields in attracting human resources depends on the degree of job choice possessed by the job seeking population. Results indicate that organizational CSP is positively related to employer attractiveness for job seekers with high levels of job choice but not related for populations with low levels suggesting advantages to firms with high levels of CSP in the ability to attract the most qualified employees.

Unfortunately, cases like Mr. Turner’s are common, and likely to become more so in the near future, as the number of people aged 65 and older is expected to increase to about 74 million by 2030, an...

The remodel the structure of chromatin (RSC) nucleosome remodeling complex is a conserved chromatin regulator with roles in chromatin organization, especially over nucleosome depleted regions therefore functioning in gene expression. Recent reports in Saccharomyces cerevisiae have identified specificities in RSC activity toward certain types of nucleosomes. RSC has now been shown to preferentially evict nucleosomes containing the histone variant H2A.Z in vitro. Furthermore, biochemical activities of distinct RSC complexes has been found to differ when their nucleosome substrate is partially unraveled. (...) Mammalian BAF complexes, the homologs of yeast RSC and SWI/SNF complexes, are also linked to nucleosomes with H2A.Z, but this relationship may be complex and extent of conservation remains to be determined. The interplay of remodelers with specific nucleosome substrates and regulation of remodeler outcomes by nucleosome composition are tantalizing questions given the wave of structural data emerging for RSC and other SWI/SNF family remodelers. (shrink)

In this paper I explore how citizenship education might position students as always/everywhere political to diminish the pervasive belief that one either is or is not a “political person.” By focusing on how liberal and radical democracy are both necessary frameworks for engaging with issues of power, I address how we might reframe citizenship education to highlight the ubiquity of politics, offering a deepened sense of democracy. This reframing of citizenship education entails highlighting how liberalism and radical democracy are mutually (...) reinforcing when it comes to illustrating political life as entangled in power relations. My argument centers on Sigal Ben-Porath’s :381–395, 2012) concept of shared fate as a frame for citizenship education. In this model, students are habituated into thinking of democracy as an “enduring pluralism” in which their fates are connected to that of their fellow citizens. In this paper I recast shared fate education in the singular to an education of shared fates in the plural. By doing so I theorize how citizenship education might construct citizenship as relational, emotional, embedded in power, and uncomfortable. (shrink)

The current study examined whether Callous-Unemotional (CU) traits, a core component of psychopathy, modulate neural responses of participants engaged in a social exchange game. In this task, participants were offered an allocation of money and then given the chance to punish the offerer. Twenty youth participated and responses to both offers and the participant’s punishment (or not) of these offers were examined. Increasingly unfair offers were associated with increased dorsal anterior cingulate cortex (dACC) activity but this responsiveness was not modulated (...) by CU traits. Increasing punishment of unfair offers was associated with increased dACC and anterior insula activity and this activity was modulated by CU traits. Higher CU trait participants showed a weaker association between activity and punishment level. These data suggest that CU traits are associated with appropriate expectations of other individual’s normative behavior but weaker representations of such information when guiding behavior of the self. (shrink)

The COVID‐19 pandemic has reinforced the critical role of ethics and community engagement in designing and conducting clinical research during infectious disease outbreaks where no vaccine or treatment already exists. In reviewing current practices across Africa, we distinguish between three distinct roles for community engagement in clinical research that are often conflated: 1) the importance of community engagement for identifying and honouring cultural sensitivities; 2) the importance of recognising the socio‐political context in which the research is proposed; and 3) the (...) importance of understanding what is in the interest of communities recruited to research according to their own views and values. By making these distinctions, we show that current practice of clinical research could draw on anthropology in ways which are sometimes unnecessary to solicit local cultural values, overlook the importance of socio‐political contexts and wider societal structures within which it works, potentially serving to reinforce unjust political or social regimes, and threaten to cast doubt on the trustworthiness of the research. We argue that more discerning anthropological engagement as well as wider collaboration with other social scientists and those working in the humanities is urgently needed to improve the ethics of current biomedical and pharmaceutical research practice in Africa. (shrink)