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)

In lieu of an abstract, here is a brief excerpt of the content:Feminist Studies 45, no. 1. © 2019 by Feminist Studies, Inc. 67 Leila J. Rupp Queer Dilemmas of Desire The dilemmas of desire confronting young women in contemporary US society are all too familiar. In the face of the persistent double standard that separates sluts from good girls, young women mobilize a variety of strategies: they lack desire, deny desire, restrain desire, police desire, and sometimes embrace desire. They (...) confront expectations to be sexy but not too sexual even as they insist on the right to be just as sexually active as men. Even in the hookup scene on college campuses, potentially liberating in its facilitation of noncommittal sexual encounters, young women worry about hooking up too much. It is a familiar story, but one that most often leaves behind young women with queer desires. Where they do appear, there are hints that they are not as likely to suppress their desires as straight women, no doubt because it is hard to ignore one’s desires when they fly in the face of heteronormative expectations. But it is also hard to come to grips with queer desires, and that is why the dilemmas I explore here are different. Unlike young straight women working to control their desires, the queer students whose stories I tell report awareness and acceptance of their attractions, sometimes from a very young age. Yet they encounter other kinds of dilemmas, especially uncertainty about the boundary between erotic love and intense friendship, a dilemma harking back to an earlier world of romantic friendship. And in the end, despite a contemporary social context in which nonnormative sexualities are more visible than ever before, 68 Leila J. Rupp experiencing queer desires continues to elicit confusion. Much has changed, but much has not. We know a great deal about straight dilemmas of desire. On the one hand, the double standard that separates sluts from good girls has persisted, despite the loosening of restrictions we associate with the sexual revolution of the long 1960s. In the face of slut shaming, young women continue to mobilize a variety of strategies, which Deborah Tolman has documented so eloquently in Dilemmas of Desire. Young women of color face additional obstacles to enjoying their desire, as the Latina girls we encounter in Lorena Garcia’s Respect Yourself, Protect Yourself make clear through their policing of their own and other girls’ sexuality in the face of racist stereotypes of unrestrained sexuality and teenage motherhood.1 On the other hand, a whole raft of commentators depict young women increasingly insisting on the right to be just as sexual as men. From Ariel Levy’s Female Chauvinist Pigs to Peggy Orenstein’s Girls and Sex to Nancy Jo Sales’ American Girls, critics lament young women embracing sex as a form of empowerment.2 The tension arising from the contradictory responses of young women to the demands placed on their sexuality is nowhere clearer than in the ongoing debate about the impact of hookup culture on women. Is hooking up good for women because it allows them to be sexual while pursuing their studies and career goals unencumbered by intimate relationships, as Hannah Rosin has suggested? Or is it, as Kathleen Bogle first argued in Hooking Up, exploitative in fashioning sexual encounters around men’s preference for sex without commitment? Or is it somewhere in between, with some 1. See Leora Tanenbaum, Slut! Growing up Female with a Bad Reputation (New York: HarperCollins, 2000); Emily White, Fast Girls: Teenage Tribes and the Myth of the Slut (New York: Berkeley Books, 2002); Sarah A. Miller, “’How You Bully a Girl:’ Sexual Drama and the Negotiation of Gendered Sexuality in High School,” Gender & Society 30, no. 5 (2016): 721–44; Deborah L. Tolman, Dilemmas of Desire: Teenage Girls Talk about Sexuality (Cambridge, MA: Harvard University Press, 2002); and Lorena Garcia, Respect Yourself, Protect Yourself: Latina Girls and Sexual Identity (New York: New York University Press, 2012). 2. Ariel Levy, Female Chauvinist Pigs: Women and the Rise of Raunch Culture (New York: Free Press, 2005). See also Peggy Orenstein, Girls and Sex: Navigating the Complicated New Landscape (New York: HarperCollins, 2016); Nancy Jo Sales, American Girls: Social Media and the Secret Lives of... (shrink)

Ethics in participatory research -- Partnership, collaboration and power -- Blurring the boundaries between researcher and researched, academic and activist -- Community rights, conflict and democratic representation -- Co-ownership, dissemination and impact -- Anonymity, privacy, and confidentiality -- Institutional ethical review processes -- Social action for social change.

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)

Aesthetic disgust is a key component of most classic works of drama because it has much more potential than to simply shock the audience. This first extensive study on dramatic disgust places this sensation among pity and fear as one of the core emotions that can achieve _katharsis _in drama. The book sets out in antiquity and traces the history of dramatic disgust through Kant, Freud, and Kristeva to Sarah Kane's _in-yer-face _theatre. It establishes a framework to analyze forms (...) and functions of disgust in drama by investigating its different cognates (_miasma_, _abjection_, etc.). Providing a concise argument against critics who have discredited aesthetic disgust as juvenile attention-grabbing, Sarah J. Ablett explains how this repulsive emotion allows theatre to dig deeper into what it means to be human. (shrink)

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)

ABSTRACT Many people argue that disagreements and inconsistencies between Research Ethics Committees are morally problematic and there has been much effort to ‘harmonise’ their judgements. Some inconsistencies are bad because they are due to irrationality, or carelessness, or the operation of conflicting interests, and so should be reduced or removed. Other inconsistencies, we argue, are not bad and should be left or even encouraged. In this paper we examine three arguments to reject the view that we should strive for complete (...) consistency between committees. The first argument is that differences in judgement are not necessarily incompatible with ideas of justice for patients who are potential participants of research reviewed by different committees. We call this ‘the justice argument.’ The second argument is that such committees do not have access to a single moral truth, to which their judgement is supposed to correspond. We call this the ‘moral pluralism argument.’ The third argument is that the process of ethics committee review is also morally relevant and not solely the outcome. We call this the ‘due process argument.’ While we fall short of establishing exactly how much variation and on what substantive issues would be ethically permissible, we show that it is largely inevitable and that a certain amount of variation could be seen as a desirable part of the institution of medical research. (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.

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)

This study explored the comparative quality of social studies lesson plans generated by artificial intelligence (AI) and preservice teachers (PSTs), assessed by experienced social studies teacher educators. Using a concurrent mixed-methods approach, evaluators blind-reviewed six lesson plans—three AI-generated and three PST-generated—using a research-based rubric addressing coherence, clarity, learning objectives, activities, assessment alignment, and integration of inquiry and critical thinking. Quantitative findings indicated AI-generated lessons consistently outperformed PST-generated lessons in clarity, structured alignment, and inquiry integration. Qualitative analyses revealed a central paradox: (...) AI was better at the technical elements of lesson planning, excelling in procedural efficiency and clarity, making them practically beneficial for immediate classroom use; however, human teachers brought more depth and creativity when those elements were present, demonstrating greater historical nuance and critical engagement. These findings suggest AI’s promising potential as a foundational resource to alleviate teacher workloads and reduce burnout, while underscoring the irreplaceable role of human creativity and pedagogical judgment. (shrink)

Emerging research has found that emotional intelligence predicts (un)ethical behaviors. Specifically, past research indicates that emotional intelligence is positively related to citizenship behaviors (i.e., voluntary behaviors that benefit the organization and/or its employees) and negatively related to counterproductive behaviors (i.e., behaviors that harm the organization and/or its employees). What remains unclear, however, is how emotional intelligence relates to ethical business decisions (i.e., decisions that indirectly impact the stakeholders of an organization through the prioritization of others’ well-being above personal or organizational (...) gains). Further, there is a lack of research investigating the mechanisms through which emotional intelligence relates to ethical decisions and behaviors. Across two studies, we investigate the former issue among employed individuals (Study 1; N = 230) and the latter issue among business students (Study 2; N = 143). In Study 1, we found emotional intelligence positively predicted both ethical business decisions and organizational citizenship behaviors and negatively predicted counterproductive work behaviors. In Study 2, we examined self-efficacy as the mediating mechanism between emotional intelligence and ethical decision-making and behaviors and found significant indirect effects between emotional intelligence and ethical business decision-making, citizenship behaviors, and counterproductive behaviors. These findings demonstrate that emotionally intelligent individuals are more likely to have the self-efficacy to make ethical business decisions and engage in ethical behaviors. Implications for both business ethics theory and practice are discussed. (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)

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

Jansen and Wall suggest a new way of defending hard paternalism in clinical research. They argue that non-therapeutic research exposing people to more than minimal risk should be banned on egalitarian grounds: in preventing poor decision-makers from making bad decisions, we will promote equality of welfare. We argue that their proposal is flawed for four reasons.First, the idea of poor decision-makers is much more problematic than Jansen and Wall allow. Second, pace Jansen and Wall, it may be practicable for regulators (...) to uncover the values that a potential research participant holds when agreeing to enter a research project, so their claim that we must ban such research projects for all if we are to ban them for poor decision-makers looks to be unmotivated. Third, there seem to be cases where the liberty to enter the sort of research project Jansen and Wall discuss is morally weighty, and arguably should outweigh concerns of egalitarian distribution. Fourth, banning certain types of research, which seem on the face of it to offer an unfavourable risk-benefit ratio, would have unwelcome consequences for all clinical research, which Jansen and Wall do not recognize. (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)

Often when considering the topic of women and associations, we are put in mind of women’s associations as comprised of women for the sake of women’s unique interests. This chapter, however, emphasizes major changes within the institution of marriage and thus the voluntary initiation of the family in order to provide a more complete picture of women’s experience of free associations. This pivotal change in the condition of women must be highlighted prior to considering the women’s associations that ultimately brought (...) about serious political change for women through the vote. In some ways, these associations appear to rebel against the confines of family life, but they also relied upon an earlier re-imagining of women’s position in society that was realized through the reimagining of the family association in the nineteenth century. Two great political thinkers, Mary Wollstonecraft and Alexis de Tocqueville, are highlighted in order to examine these shifting social norms and offer readers a way of thinking about family life as a free association for women. The chapter then turns to women’s associations, which proliferated during the nineteenth century, as this significant democratic reconceptualization of the family took place. In particular, the temperance movement in the United States is highlighted as an exemplar of nineteenth-century women’s associations. Temperance associations had strong links to the suffrage movement, and women began to fight for the vote. The chapter concludes by noting that women’s enfranchisement marked another major shift in family life, with every family now represented by two voting adults. It also marked the public formalization of women as citizens and, importantly, enshrined their right to freedom of association. This chapter ends where many discussions of women and associative civil society begin—in the early twentieth century. This perspective on women’s experience of free associations proposes that a revolutionary change in the nature of family life is valuable to our understanding of women’s unique engagement with free associations. (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...

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

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...

This research examines how the meaning of risk, safety, and accidents are constructed in a military context. We compare meanings of these constructs among members working for three organizations (Health and Safety Executive, Ministry of Defence, and Royal Marine Commandos) jointly responsible for planning and executing “safe” military training and maneuvres in a particular unit of the United Kingdom’s Royal Marine Commandos. The discourse among these members embodies the inter-organizational collaboration over military safety, and through an analysis of this discourse (...) we situate and frame shared and contested meanings of risk, safety, and accidents within this particular community of practice. We discuss implications of these findings for theory and practice, rallying for a more contextualized understanding of what risk, safety, and accidents mean in organizational life and thus the relative nature of the standards to which organizations are expected to adhere. (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)

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)

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)