Background: Patients undergoing invasive neurosurgical procedures offer researchers unique opportunities to study the brain. Deep brain stimulation patients, for example, may participate in research during the surgical implantation of the stimulator device. Although this research raises many ethical concerns, little attention has been paid to basic studies, which offer no therapeutic benefits, and the value of patient-participant perspectives.Methods: Semi-structured interviews were conducted with fourteen individuals across two studies who participated in basic intraoperative research during their deep brain stimulator surgery. Interviews (...) explored interpretations of risks and benefits, enrollment motivations, and experiences of participating in awake brain research. Reflexive thematic analysis was conducted.Results: Seven themes were identified from participant narratives, including robust attitudes of trust, high valuations of basic science research, impacts of the surgical context, and mixed experiences of participation.Conclusion: We argue that these narratives raise the potential for a translational misconception and motivate intraoperative re-consent procedures. (shrink)

According to the PubMed resource from the U.S. National Library of Medicine, over 750,000 scientific articles have been published in the ~5000 biomedical journals worldwide in the year 2007 alone. The vast majority of these publications include results from hypothesis-driven experimentation in overlapping biomedical research domains. Unfortunately, the sheer volume of information being generated by the biomedical research enterprise has made it virtually impossible for investigators to stay aware of the latest findings in their domain of interest, let alone to (...) be able to assimilate and mine data from related investigations for purposes of meta-analysis. While computers have the potential for assisting investigators in the extraction, management and analysis of these data, information contained in the traditional journal publication is still largely unstructured, free-text descriptions of study design, experimental application and results interpretation, making it difficult for computers to gain access to the content of what is being conveyed without significant manual intervention. In order to circumvent these roadblocks and make the most of the output from the biomedical research enterprise, a variety of related standards in knowledge representation are being developed, proposed and adopted in the biomedical community. In this chapter, we will explore the current status of efforts to develop minimum information standards for the representation of a biomedical experiment, ontologies composed of shared vocabularies assembled into subsumption hierarchical structures, and extensible relational data models that link the information components together in a machine-readable and human-useable framework for data mining purposes. (shrink)

Although very young children have unprecedented access to touchscreen devices, there is limited research on how successfully they operate these devices for play and learning. For infants and toddlers, whose cognitive, fine motor, and executive functions are immature, several basic questions are significant: Can they operate a tablet purposefully to achieve a goal? Can they acquire operating skills and learn new information from commercially available apps? Do individual differences in executive functioning predict success in using and learning from the apps? (...) Accordingly, 31 2-year-olds were compared with 29 3-year-olds using two commercially available apps with different task and skill requirements: a shape matching app performed across 3 days, and a storybook app with performance compared to that on a matched paper storybook. Children also completed the Minnesota Executive Functioning Scale. An adult provided minimal scaffolding throughout. The results showed: toddlers could provide simple goal-directed touch gestures and the manual interactions needed to operate the tablet after controlling for prior experience with shape matching, toddlers’ increased success and efficiency, made fewer errors, decreased completion times, and required less scaffolding across trials, they recognized more story content from the e-book and were less distracted than from the paper book, executive functioning contributed unique variance to the outcome measures on both apps, and 3-year-olds outperformed 2-year-olds on all measures. The results are discussed in terms of the potential of interactive devices to support toddlers’ learning. (shrink)

Today, DIY -- do-it-yourself -- describes more than self-taught carpentry. Social media enables DIY citizens to organize and protest in new ways and to repurpose corporate content in order to offer political counternarratives. This book examines the usefulness and limits of DIY citizenship, exploring the diverse forms of political participation and "critical making" that have emerged in recent years. The authors and artists in this collection describe DIY citizens whose activities range from activist fan blogging and video production to knitting (...) and the creation of community gardens. Contributors examine DIY activism, describing new modes of civic engagement that include Harry Potter fan activism and the activities of the Yes Men. They consider DIY making in learning, culture, hacking, and the arts, including do-it-yourself media production and collaborative documentary making. They discuss DIY and design and how citizens can unlock the black box of technological infrastructures to engage and innovate open and participatory critical making. And they explore DIY and media, describing activists' efforts to remake and reimagine media and the public sphere. As these chapters make clear, DIY is characterized by its emphasis on "doing" and making rather than passive consumption. DIY citizens assume active roles as interventionists, makers, hackers, modders, and tinkerers, in pursuit of new forms of engaged and participatory democracy. _Contributors_Mike Ananny, Chris Atton, Alexandra Bal, Megan Boler, Catherine Burwell, Red Chidgey, Andrew Clement, Negin Dahya, Suzanne de Castell, Carl DiSalvo, Kevin Driscoll, Christina Dunbar-Hester, Joseph Ferenbok, Stephanie Fisher, Miki Foster, Stephen Gilbert, Henry Jenkins, Jennifer Jenson, Yasmin B. Kafai, Ann Light, Steve Mann, Joel McKim, Brenda McPhail, Owen McSwiney, Joshua McVeigh-Schultz, Graham Meikle, Emily Rose Michaud, Kate Milberry, Michael Murphy, Jason Nolan, Kate Orton-Johnson, Kylie A. Peppler, David J. Phillips, Karen Pollock, Matt Ratto, Ian Reilly, Rosa Reitsamer, Mandy Rose, Daniela K. Rosner, Yukari Seko, Karen Louise Smith, Lana Swartz, Alex Tichine, Jennette Weber, Elke Zobl. (shrink)

In 2013, controversy sparked student protests, campus debates, and national attention when Smith College denied admittance to Calliope Wong—a trans woman. Since then, eight women’s colleges have revised their admissions policies to include different gender identities such as trans women and genderqueer people. Given the recency of such policies, we interrogate the ways the category “woman” is determined through certain alignments of biology-, legal-, and identity-based criteria. Through an inductive analysis of administrative scripts appearing both in student newspapers and (...) in trans admittance policies, we highlight two areas U.S. women’s colleges straddle while creating these policies: inclusion/exclusion scripts of self-identification and legal documentation, and tradition-/activism-speak. Through these tensions, women’s college admittance policies not only construct “womanhood” but also serve as regulatory norms that redo gender as a structuring agent within the gendered organization. (shrink)

One of the central assertions in Anne Barnhill and Matteo Bonotti’s Healthy Eating Policy and Political Philosophy: A Public Reason Approach is that 'food and eating have many kinds of value for individuals, families, and communities', and this value 'can be both positive and negative'. One implication of this view is that healthy eating may have significant disvalue for some eaters while unhealthy eating may be highly valuable. Thus, healthy eating interventions may result in a significant loss of value or (...) increase in disvalue in eaters’ lives. The authors contend that public health policymakers should take this into account, arguing that a policy likely to result in significant losses of value or increases in disvalue is unjustifiable. In this paper, I argue that Barnhill and Bonotti’s values pluralism about food and eating offers a welcome departure from three common oversimplifications of the ethical importance of food and eating in human life: an ‘all about paternalism’ view, a healthist view, and a hedonistic view. This values pluralism enriches and enhances our understandings and normative assessments of ‘good food’ and ‘good eating’, and makes space to recognize a wider range of ‘good eaters’ than any of these oversimplifications can accommodate. This is important because being identified and treated as a ‘bad eater’ can have morally significant consequences, including damage to the eater’s agency. Thus, beyond its importance for food policy, it would be beneficial for a wide range of conversations about food and eating to adopt a values pluralist perspective. However, since some value derives from sources – such as false beliefs or oppressive identities – that may not be worthy of respect, more needs to be said about whether all value and disvalue should be treated as equivalent before this perspective can be responsibly deployed in any context. -/- . (shrink)

In 2012, a Venn diagram appeared on the blog The Kitchn detailing the characteristics of what it called the “worst dinner guest ever.” This maligned guest is not only vegan but also gluten and lactose intolerant and allergic to nuts and eggs. While a few commenters agreed with the implication that dietary constraints indicate a failure of appropriate guest behavior, most echoed what Lisa Heldke and Raymond Boisvert (2016) suggest is the dominant American view: hosts are generally obliged to accommodate (...) the dietary restrictions of their guests. For Heldke and Boisvert, this is most obviously true when guests have food allergies and serious harm can be easily avoided by a change in menu. In this essay I argue that epistemic barriers can obscure hosts’ perception of these ostensibly obvious cases, preventing them from fulfilling their obligations. Specifically, I argue that guests with food allergies and other “gut issues” can be subject to testimonial injustice that undermines their credibility, leading hosts to doubt or disbelieve their need for accommodation. Such guests may also be subject to testimonial smothering, discouraging them from disclosing their dietary restrictions in the first place. I argue that these forms of epistemic injustice raise multiple moral concerns and that hosts have a responsibility to practice epistemic humility regarding guests’ reports of gut issues. Overall, this paper aims to enable hosts and guests with gut issues alike to recognize and overcome epistemic obstacles to good hospitality—the importance of which extends far beyond the dinner table. (shrink)

As members of the fetal surgery advisory board at a large tertiary care center, we read with great interest Hendriks’ et al. target article proposing a new ethical framework for fetal therap...

This paper contends that eating shapes the self; that is, our practices and understandings of eating can cultivate, reinforce, or diminish important aspects of the self, including agency, values, capacities, affects, and self-understandings. I argue that these self-shaping effects should be included in our ethical analyses and evaluations of eating. I make a case for this claim through an analysis and critique of the hypothesis that young women’s vegetarianism is a risk, sign, or “cover” for eating disorders or disordered eating. (...) After outlining the relevant empirical literature, I suggest that the evidence for this hypothesis is inconclusive. Given this uncertainty, we should consider the risks of making a mistake when accepting or rejecting this understanding of young women’s eating. I argue that these risks importantly include negative effects on the self, such as damage to moral and epistemic agency. Along with other potential consequences of mistakenly accepting the hypothesis, these effects give us reason to reject it pending more conclusive research. Overall, this paper offers a philosophical intervention into the debate over the relationship between vegetarianism and eating disorders while illustrating the ethical importance and relevance of eating as a self-shaping activity. (shrink)

We were interested to read the current target article, given our admiration for the senior author’s comprehensive coverage of these same topics a decade ago (Donley, Hul...

In their target article, Conley et al. (2023) appropriately highlight the ongoing conceptual and practical opacity of public engagement (PE) in the translation of human gene editing (HGE) (Conley e...

In an effort to address healthcare disparities in lesbian, gay, bisexual, transgender, and queer populations, many hospitals and clinics institute diversity training meant to increase providers’ awareness of and sensitivity to this patient population. Despite these efforts, many healthcare spaces remain inhospitable to LGBTQ patients and their loved ones. Even in the absence of overt forms of discrimination, LGBTQ patients report feeling anxious, unwelcome, ashamed, and distrustful in healthcare encounters. We argue that these negative experiences are produced by a variety (...) of subtle, ostensibly insignificant features of healthcare spaces and interpersonal interactions called microaggressions. Healthcare spaces and providers often convey heteronormative microaggressions, which communicate to LGBTQ—and, we suggest, intersex and asexual —people that their identities, experiences, and relationships are abnormal, pathological, unexpected, unwelcome, or shameful. We identify heteronormative microaggressions common to healthcare settings and specify how they negatively impact LGBTQIA patients. We argue that standard diversity training cannot sufficiently address heteronormative microaggressions. Despite these challenges, healthcare institutions and providers must take responsibility for heteronormative microaggressions and take steps to reduce their frequency and mitigate their effects on LGBTQIA care. We conclude by offering strategies for problem-solving at the level of medical education, institutional culture and policy, and individual awareness. (shrink)

This book brings together an international collection of experts in reproductive ethics, law, disability studies, and medicine to explore the challenging future of reproduction and children. From the medical to the social and from the financial to the legal, the authors explore the expanding impact of reproductive genetics on our society. New advances in genetic technologies are revolutionizing the practice of reproductive medicine. We have expanded our ability to detect genetic changes in embryos and fetuses in ways that potentially allow (...) to identify, treat, or prevent a growing range of diseases. The development of gene-editing technologies raises questions about the possibility of removing disease-causing variants from embryos before pregnancy implantation. The growing sophistication of prenatal genomic sequencing offers us glimpses into the whole genome of the developing fetus. And, the increasingly sophisticated science of 'gene matching' allows us greater and greater foreknowledge of how the genomes of two individuals will combine in a future child. This is an indispensable book on the newest developments in bioethics caused by the sciences. Chapter 5 is available open access under a Creative Commons Attribution 4.0 International License via link.springer.com. (shrink)

Given the prevalence of social media, a nascent but important area of research is the effect of social media posting on one’s own self. It is possible that an individual’s social media posts may have predictive capacity, especially in relation to health behavior. Researchers have long used concepts from the theory of reasoned action to predict health behaviors. The theory does not account for social media, which may influence or predict health behaviors. The purpose of this study was to test (...) a model including Facebook alcohol displays and constructs from the theory of reasoned action to predict binge drinking. Incoming college freshmen from two schools (312 participants between 18 and 19 years old) were interviewed prior to (T1) and 1 year into college (T2), and their Facebook profiles were evaluated for displayed alcohol content. Path modeling was used to evaluate direct and indirect paths predicting binge drinking. Path analysis suggested that Facebook alcohol displays at T1 directly predict binge drinking at T2, while alcohol attitude both directly and indirectly predicts binge drinking. Based on these results, a preliminary model of social media presentation and action is discussed. (shrink)

As next‐generation genomic sequencing, including whole‐genome sequencing information, becomes more common in research, clinical, and public health contexts, there is a need for comprehensive communication strategies and education approaches to prepare patients and clinicians to manage this information and make informed decisions about its use, and nowhere is that imperative more pronounced than when genomic sequencing is applied to newborns. Unfortunately, in‐person counseling is unlikely to be applicable or cost‐effective when parents obtain genomic risk information directly via the Internet. As (...) a rule, communication strategies should match how people are accessing health information. Today, many people can obtain health information in a variety of settings, including through direct‐to‐consumer services, via websites, and through other digital channels or settings. In response to these changes, new communication strategies need to be considered. Adopting a comprehensive communication model means understanding the multiple levels of influence experienced by parents and the clinicians who serve them. In addition, applying communication‐science principles can help in addressing some key challenges to effectively communicating genomic information to parents. (shrink)

Drawing on the relation between disciplinary power and aesthetics, Honi Fern Haber argues that the muscled woman’s “revolting” body undermines patriarchy and empowers women. Consequently, female bodybuilding can be a Foucauldian and feminist practice of resistance. I will argue that Haber’s insistence on the visibility of embodied resistance is flawed. By positing a static goal and failing to sufficiently consider non-visible aspects of normalization, namely pleasure and pain, Haber risks reinscribing the muscled woman into yet another normalizing scheme. In the (...) light of recent work on Foucault's ethics and embodied resistance, I suggest that weight lifting may be more successfully recommended as a practice of resistance when undertaken to increase capacities and for the pleasure of the activity itself. (shrink)

This paper offers a defense of the practice of mindless eating. Popular accounts of the practice suggest that it is non-autonomous and to blame for many of society’s food related problems, including the so-called obesity epidemic and the prevalence of diet related illnesses like diabetes. I use Maureen Sie’s “traffic participation” account of agency to argue that some mindless eating is autonomous, or more specifically, agential. Insofar as we value autonomous eating, then, it should be valued. I also argue that (...) mindless eating can be substantively good: it can help us achieve valuable ends, like creating and maintaining community. Acknowledging the agency and value in mindless eating has both practical and ethical benefits. I contend that it can help us preserve the value in mindless eating while suggesting more effective ways to change it, and, by offering a new narrative about mindless eaters, may be less damaging to agency than popular narratives. (shrink)

Although “you are what you eat” is a well-worn cliché, personal identity does not figure prominently in many debates about the ethics of eating interventions. This paper contributes to a growing philosophical literature theorizing the connection between eating and identity and exploring its implications for eating interventions. I explore how “identity-policing,” a key mechanism for the social constitution and maintenance of identity, applies to eating and trace its ethical implications for eating interventions. I argue that identity policing can be harmful (...) and that eating interventions can subject people to these harms by invoking identity policing qua intervention strategy or by encouraging people to eat in ways that subject them to policing from others. While these harms may be outweighed by the benefits of the intervention being promoted, they should nonetheless be acknowledged and accounted for. To aid in these evaluations, I consider factors that modulate the presence and severity of identity-policing and discuss strategies for developing less harmful eating interventions. I conclude by considering the relationship between identity-policing and identity loss caused by long-term diet change. This paper contributes to the centering of identity in food ethics and to a more comprehensive picture of identity’s ethical importance for eating interventions. (shrink)

Philosophers analyze the last of the great rock stars.

It is a common practice for family members to bring food to hospitalized loved ones. However, in some cases, this food contravenes a patient's dietary plan. Such situations can create significant tension and distrust between health care professionals and families and may lead the former to doubt a family's willingness or ability to support patient recovery. This case‐study essay offers an ethical analysis of these situations. We draw on Hilde Lindemann's work to argue that providing food to family members is (...) an important way that families discharge their moral functions of caring for their members and holding them in their identities. When family members are hospitalized, other means of performing these functions are limited. Acknowledging the ethical importance of feeding family members alongside the medical need for dietary restrictions, we offer strategies for creative problem‐solving that center diet as a subject for shared decision‐making and regular, ongoing communication among health care professionals, patients, and families. (shrink)

I am a feminist bioethicist whose work focuses on the ethics of eating. Though COVID-19 is not a foodborne illness, it has had significant impacts on eating around the world, including increases in food insecurity, dining restrictions and closures of restaurants, interruptions in supply chains, and rising food prices. Many people have been eating at home more often—some alone, others with members of their households—and emotional or stress eating is on the rise.A feminist perspective is indispensable for understanding and responding (...) appropriately to these changes. The costs of these changes have not been distributed equally, and drawing attention to how disproportionate harm tracks gendered and intersectional... (shrink)

Contemporary philosophers are increasingly turning to the work of Emmanuel Levinas to bring a consideration of ethics into their own thinking. As an exponent of the phenomenological tradition, Levinas ranks with Heidegger and Sartre; as a disciple of Husserl, he was one of the most independent and original interpreters, testifying to the fruitfulness of Husserl's phenomenology. In collecting almost all of Levinas's articles on Husserlian phenomenology, this volume gathers together a wealth of thoughtful exposition and interpretation by one of the (...) most important European philosophers of the twentieth century. Levinas's thought is relevant to a broad variety of disciplines and concerns. This volume serves as a reliable introduction for the beginning student, as well as satisfying the expert's more demanding and critical desire for insight into the complexities of Levinas's thought. (shrink)

Philosophers and other scholars have often claimed that the arts are not only cognitively valuable but also morally improving (e.g., Nussbaum, 1997). However, their arguments often proceed with little attention to empirical evidence. At the same time, filmmakers and media creators deliberately use devices to direct their audience’s attention, with the intention of impacting viewers’ cognitive, affective, and neurological responses in meaningful ways (Carroll & Seeley, 2013). Whether these devices have the desired effects, and on whom, also remains largely untested. (...) If we want to understand the ways that film and media can have moral impacts, we must step out of our disciplinary siloes. It is not enough for film experts, philosophers, and experimentalists to merely take note of each other’s work; collaborative interdisciplinary research is required, both to improve methods and to examine questions that have not yet been empirically explored. In this article we propose a model for this kind of research, focusing on how media can influence moral understanding. We first outline the challenges that must be met for such research to be successful, including clarifying and operationalizing concepts, measuring moral understanding, and applying empirical methods to media and the arts. We then describe the advantages of interdisciplinary collaboration for meeting these challenges, in the context of some recent examples of interdisciplinary projects on related themes. (shrink)

This thought-provoking text explores the ethical dimensions of the professional nursing practice. The authors discuss important topics such as inter-professional relationships, collective action, nursing research, and educational requirements within the context of professional commitment. Providing a balance between an empirical and a philsophical framework, the book stimulates the reader to ponder, analyze and evaluate the professional and ethical aspects of these issues.

We describe and analyze 13 cases handled by our ethics consultation service (ECS) in which families requested continuation of physiological support for loved ones after death by neurological criteria (DNC) had been declared. These ethics consultations took place between 2005 and 2013. Patients’ ages ranged from 14 to 85. Continued mechanical ventilation was the focal intervention sought by all families. The ECS’s advice and recommendations generally promoted “reasonable accommodation” of the requests, balancing compassion for grieving families with other ethical and (...) moral concerns such as stewardship of resources, professional integrity, and moral distress. In cases we characterized as finitegoal accommodation, a “reasonable accommodation” strategy proved effective in balancing stakeholders’ interests and goals, enabling steady progress toward resolution. When a family objected outright to a declaration of DNC and asked for an indefinite accommodation, the “reasonable accommodation” approach offered clinicians little practical direction, and resolution required definitive action by either the family or the clinical team. Based on our analysis and reflections on these 13 cases, we propose ethically justified and practical guidelines to assist healthcare professionals, administrators, and ECSs faced with similar cases. (shrink)

In this paper, we present the results of two surveys that investigate subjects’ judgments about what can be known or justifiably believed about lottery outcomes on the basis of statistical evidence, testimonial evidence, and “mixed” evidence, while considering possible anchoring and priming effects. We discuss these results in light of seven distinct hypotheses that capture various claims made by philosophers about lay people’s lottery judgments. We conclude by summarizing the main findings, pointing to future research, and comparing our findings to (...) recent studies by Turri and Friedman. (shrink)

Having a confirmation bias sometimes leads us to hold inaccurate beliefs. So, the puzzle goes: why do we have it? According to the influential argumentative theory of reasoning, confirmation bias emerges because the primary function of reason is not to form accurate beliefs, but to convince others that we’re right. A crucial prediction of the theory, then, is that confirmation bias should be found only in the reasoning domain. In this article, we argue that there is evidence that confirmation bias (...) does exist outside the reasoning domain. This undermines the main evidential basis for the argumentative theory of reasoning. In presenting the relevant evidence, we explore why having such confirmation bias may not be maladaptive. (shrink)

In lieu of an abstract, here is a brief excerpt of the content: In the early days of the COVID-19 pandemic, the mundane activity of eating with or near others became physically hazardous and normatively fraught. Nourishing oneself outside one's home could raise serious risks to one's health and wellbeing, and was suddenly subject to new policies and prohibitions aimed at minimizing harm and liability. The decision to eat out demanded personal calculations of risk and benefit, as well as interpersonal (...) negotiation, sometimes prompting contentious conversations about the realities of disease transmission and our moral responsibilities. For many people, coming to think about eating outside the home as a pressing and significant threat to health and life was a radical shift. Yet, as Michael Gill's Allergic Intimacies: Food, Disability, Desire, and Risk details, the experience of eating meals as risking lethal consequences, demanding active personal risk management (including knowledge and negotiation of laws and policies), and straining important interpersonal relationships, is quite familiar to those living with food allergies. Allergic Intimacies offers a rich and generative exploration of the challenges of living with food allergies in the United States. A disability studies scholar, Gill frames the book as an examination of the "meanings" of food allergy from an intersectional perspective that centers both disability and race (ix). (shrink)

The notion of risk plays a central role in economics, finance, health, psychology, law and elsewhere, and is prevalent in managing challenges and resources in day-to-day life. In recent work, Duncan Pritchard (2015, 2016) has argued against the orthodox probabilistic conception of risk on which the risk of a hypothetical scenario is determined by how probable it is, and in favour of a modal conception on which the risk of a hypothetical scenario is determined by how modally close it is. (...) In this article, we use Pritchard’s discussion as a springboard for a more wide-ranging discussion of the notion of risk. We introduce three different conceptions of risk: the standard probabilistic conception, Pritchard’s modal conception, and a normalcy conception that is new (though it has some precursors in the psychological literature on risk perception). Ultimately, we argue that the modal conception is ill-suited to the roles that a notion of risk is required to play and explore the prospects for a form of pluralism about risk, embracing both the probabilistic and the normalcy conceptions. (shrink)

We are grateful to Friesen and colleagues for drawing attention to the tension between the protection of populations that may experience vulnerability with their inclusion in research (Friesen et a...

Scientific experts have confirmed that anthropogenic warming is underway, and some degree of adaptation is now unavoidable. However, the details of impacts on the scale of climate change at which humans would have to prepare for and adjust to them are still the subject of considerable research, inquiry, and debate. Planning for adaptation requires information on the scale over which human organizations and institutions have authority and capacity, yet the general circulation models lack forecasting skill at these scales, and attempts (...) to “downscale” climate models are still in the early stages of development. Because we do not know what adaptations will be required, we cannot say whether they will be harder or easier—more expensive or less—than emissions control. Whatever improvements in regional predictive capacity may come about in the future, the lack of current predictive capacity on the relevant scale is a strong argument for why we must both control greenhouse gas emissions and prepare to adapt. (shrink)

In philosophical analyses of the value of sport, a relatively unheralded feature is the opportunity that sport offers for admiration. While we readily salute many of the things that people admire (...