This paper is intended to stimulate debate amongst stakeholders in the international research community on the topic of returning individual genetic research results to study participants. Pharmacogenetics and disease genetics studies are becoming increasingly prevalent, leading to a growing body of information on genetic associations for drug responsiveness and disease susceptibility with the potential to improve health care. Much of these data are presently characterized as exploratory (non‐validated or hypothesis‐generating). There is, however, a trend for research participants to be permitted (...) access to their personal data if they so choose. Researchers, sponsors, patient advocacy groups, ethics committees and regulatory authorities are consequently confronting the issue of whether, and how, study participants might receive their individual results. Noted international ethico‐legal guidelines and public policy positions in Europe and the United States are reviewed for background. The authors offer ‘Points‐to‐Consider’ regarding returning research results in the context of drug development trials based on their knowledge and experience. These considerations include: the clinical relevance of data, laboratory qualifications, informed consent procedures, confidentiality of medical information and the competency of persons providing results to participants. The discussion is framed as a benefit‐to‐risk assessment to balance the potential positive versus negative consequences to participants, while maintaining the integrity and feasibility of conducting genetic research studies. (shrink)

ABSTRACT This paper is intended to stimulate debate amongst stakeholders in the international research community on the topic of returning individual genetic research results to study participants. Pharmacogenetics and disease genetics studies are becoming increasingly prevalent, leading to a growing body of information on genetic associations for drug responsiveness and disease susceptibility with the potential to improve health care. Much of these data are presently characterized as exploratory (non‐validated or hypothesis‐generating). There is, however, a trend for research participants to be (...) permitted access to their personal data if they so choose. Researchers, sponsors, patient advocacy groups, ethics committees and regulatory authorities are consequently confronting the issue of whether, and how, study participants might receive their individual results. Noted international ethico‐legal guidelines and public policy positions in Europe and the United States are reviewed for background. The authors offer ‘Points‐to‐Consider’ regarding returning research results in the context of drug development trials based on their knowledge and experience. These considerations include: the clinical relevance of data, laboratory qualifications, informed consent procedures, confidentiality of medical information and the competency of persons providing results to participants. The discussion is framed as a benefit‐to‐risk assessment to balance the potential positive versus negative consequences to participants, while maintaining the integrity and feasibility of conducting genetic research studies. (shrink)

This essay reflects on some of the problems with characterizing collective epistemic resistance to oppression as “unthinking” or antithetical to reason by highlighting the epistemic labor involved in contending with and resisting epistemic oppression. To do so, I develop a structural notion of epistemic gaslighting in order to highlight structural features of contexts within which collective epistemic resistance to oppression occurs. I consider two different forms of epistemic echoing as modes of contending with and resisting epistemic oppression that are sometimes (...) mischaracterized as “unthinking” or “group think.” The first sense highlights the epistemic labor entailed in withdrawing from conditions of structural epistemic gaslighting that is sometimes mischaracterized as a pernicious self-sequestering that is antithetical to reason. The second sense highlights the epistemic labor entailed in actively confronting epistemic structures that gaslight what is sometimes mischaracterized as an “irrational group think.” In both cases, I highlight how epistemic acts that may appear unreasonable “within the gaslight” are, on the contrary, engaged in serious and important epistemic labor. (shrink)

In order to benefit from the advantages of localist coding, neural models that feature winner-take-all representations at the top level of a network hierarchy must still solve the computational problems inherent in distributed representations at the lower levels.

University of Keele, England This article analyzes the strategies and means by which universalist claims about human nature become successful in science. Of specific interest are the conditions under which claims of this sort are taken to be inherently superior to those which are particularistic or context-specific (a hierarchy of values which we term "universality bias"). We trace the birth of universalists claims in neglected fields, their growth through methodological agreements and the use of invisible referents, and their roots in (...) multiple audiences with different evaluation criteria. Our analysis complements philosophical and political critiques of theories about human nature and demonstrates the historical specificity of universalist claims. (shrink)

Abstractabstract:Recent clinical trials of psychedelic drugs aim to treat a range of psychiatric conditions in adults. MDMA and psilocybin administered with psychotherapy have received FDA designation as "breakthrough therapies" for post-traumatic stress disorder (PTSD) and treatment-resistant depression (TRD) respectively. Given the potential benefit for minors burdened with many of the same disorders, calls to expand experimentation to minors are inevitable. This essay examines psychedelic research conducted on children from 1959 to 1974, highlighting methodological and ethical flaws. It provides ethics and (...) policy recommendations for psychedelics research involving children and adolescents, including recognizing that the psychedelic experience is an ineffable one that makes informed proxy consent for parents, guardians, and others especially challenging. Psychedelic experiences are associated with novel benefits and risks, such as significant personality changes, shifts in fundamental values, and possible re-exposure to traumatic memories. These effects may alter the process of personality development in minors. Recommendations for ethically sound psychedelics research in minors include strict adherence to eligibility criteria, including a comprehensive family and individual psychiatric, substance use, and trauma history. An age-appropriate assent process that includes considerations related to the use of therapeutic touch should be developed. In addition, oversight by data safety monitoring boards and patient and family advocates, coupled with the adoption of pharmacoequity best practices, will help to ensure safety and fairness of psychedelics research in children. (shrink)

How likely is it that traumatic childhood events are misremembered or forgotten? Research on children′s recollections of painful or frightening medical procedures may help answer this question by identifying predictors of accurate versus inaccurate memory. In the present study, 46 3- to 10-year-old children were interviewed after undergoing a stressful medical procedure involving urethral catheterization. Age differences in memory emerged, especially when comparing 3- to 4-year-olds with older children. Children′s understanding of the event, parental communication and emotional support, and children′s (...) own emotional reactions also predicted accuracy. Memory did not reliably vary for children who endured the medical procedure once versus multiple times. Results are discussed in relation to possible precursors of accurate and false memories, and forgetting, of traumatic events experienced in childhood. (shrink)

Confidentiality is a cornerstone of the physician-patient relationship. Breaches of confidentiality in the context of genetic testing are of particular concern for a number of reasons. First, genetic testing reveals information not only about a particular patient, but also about his or her family members. Second,genetic testing can label healthy people as “at risk,” subjecting them to possible stigmatization or discrimination by third parties. Third, as genetic testing becomes more widespread and is incorporated into primary care, breaches of confidentiality might (...) inadvertently occur more frequently because primary care providers may not be trained to understand the uniqueness of genetic information. Until now, genetic services have been provided primarily by medical geneticists and genetic counselors. However, with the proliferation of new genetic presymptomatic and carrier tests, primary care physicians are going to become increasingly involved in genetic testing. Currently, little is known about physicians’ attitudes toward disclosure of confidential genetic information to third parties. (shrink)

Twenty-five papers presented at University of Nairobi in 2000 cover themes of: African Philosophy, Approaches and Methodologies; Problems of Missionary and Colonialist Thinking; Gender and Culture in Africa; Sage Philosophy; and Philosophy, Ethics, and Politics.

I distinguish between two senses in which feminists have argued that the knower is social: 1. situated or socially positioned and 2. interdependent. I argue that these two aspects of the knower work in cooperation with each other in a way that can produce willful hermeneutical ignorance, a type of epistemic injustice absent from Miranda Fricker's Epistemic Injustice. Analyzing the limitations of Fricker's analysis of the trial of Tom Robinson in Harper Lee's To Kill a Mockingbird with attention to the (...) way in which situatedness and interdependence work in tandem, I develop an understanding of willful hermeneutical ignorance, which occurs when dominantly situated knowers refuse to acknowledge epistemic tools developed from the experienced world of those situated marginally. Such refusals allow dominantly situated knowers to misunderstand, misinterpret, and/or ignore whole parts of the world. (shrink)

In this article, I analyze survey data from more than 1,000 financial services employees to understand how gender inequality manifests itself in employees' informal networks. I found that even when Black and white women had jobs in which they controlled organizational resources and had ties to powerful employees, they received less work-related help from their network members than did white men. Drawing on status characteristics theory, I explain that network members were less likely to invest in women than in white (...) men because of cultural beliefs that rank women below that of white men. While past research has documented how employers use gender to rank workers and distribute rewards unequally, my research indicates that workers use gender to categorize and rank their network members as well. (shrink)

This article considers some of the ways in which ‘the black woman’ as both representation and embodied, sentient being is rendered visible and invisible, and to link these to the multiple and competing ways in which she is ‘present’. The issues are engaged through three distinct but overlapping conceptualisations of ‘presence’. ‘Presence’ as conceived (and highly contested) in performance studies; ‘presence’ as conceived and worked with in psychoanalysis; and ‘presence’ as decolonising political praxis among Indigenous communities. I use these conceptualisations (...) of presence to consider the various ways in which the black woman as figure and as embodied/sentient subject has been made present/absent in different discursive registers. I also explore what is foreclosed and how this is itself linked to legacies of colonial ‘worlding’. I end with consideration of alternative modes of black women's presence and how this offers a resource for new modes of sociality. (shrink)

Confidentiality is a cornerstone of the physician-patient relationship. Breaches of confidentiality in the context of genetic testing are of particular concern for a number of reasons. First, genetic testing reveals information not only about a particular patient, but also about his or her family members. Second,genetic testing can label healthy people as “at risk,” subjecting them to possible stigmatization or discrimination by third parties. Third, as genetic testing becomes more widespread and is incorporated into primary care, breaches of confidentiality might (...) inadvertently occur more frequently because primary care providers may not be trained to understand the uniqueness of genetic information. Until now, genetic services have been provided primarily by medical geneticists and genetic counselors. However, with the proliferation of new genetic presymptomatic and carrier tests, primary care physicians are going to become increasingly involved in genetic testing. Currently, little is known about physicians’ attitudes toward disclosure of confidential genetic information to third parties. (shrink)

Cancer susceptibility testing is likely to become routine in medical practice, despite many limitations and unanswered questions. These uncertainties greatly complicate the process of informed consent, creating an excellent opportunity to reconsider exactly how it should be conducted. Research with women's reactions to the availability of genetic susceptibility testing for breast cancer dramatically underscores that informed consent ought to be highly individualized, taking care to discern what patients believe about the disease and its causes and what role they want their (...) physician to play. (shrink)

This volume is an introduction to both newer and more established ideas in the growing field of critical phenomenology from a number of disciplinary perspectives.

This essay argues that Merleau-Ponty’s phenomenology of embodiment can be an extremely helpful ally for contemporary feminist theorists, critical race theorists, and disability studies scholars because his work suggests that the gender, race, and ability of bodies are not innate or fixed features of those bodies, much less corporeal indicators of physical, social, psychic, and even moral inferiority, but are themselves dynamic phenomena that have the potential to overturn accepted notions of normalcy, naturalness, and normativity. Taking seriously Merleau-Ponty’s insistence that (...) our bodies are the means by which we directly engage with the world, I suggest, encourages us to be attentive to how an individual’s or group’s gender, race, and bodily abilities differentially affect how their bodies are responded to by other bodies. The responses of others, in turn, directly influences the significance of an individual’s actions within that situation. This essay provides a critical examination of specific feminist philosophers, critical race scholars, and disability theorists who creatively utilize Merleau-Pontian insights to illustrate, and ultimately combat, the insidious ways in which sexism, racism, and “compulsory able-bodiedness”, impoverish the lived experience of both oppressors and the oppressed, largely by predetermining the meaning of their bodily interactions in accordance with institutionalized cultural expectations and norms. (shrink)

Starting in early childhood, children are socialized to be honest. However, they are also expected to avoid telling the truth in sensitive situations if doing so could be seen as inappropriate or impolite. Across two studies (total N = 358), the reasoning of 3‐ to 5‐year‐old children in such a scenario was investigated by manipulating whether the information in question would be helpful to the recipient. The studies used a reverse rouge paradigm, in which a confederate with a highly salient (...) red mark on her nose asked children whether she looked okay prior to having her picture taken. In Study 1, children tended to tell the truth only if they were able to observe that the mark was temporary and the confederate did not know it was there. In Study 2, children tended to tell the truth only if they were able to observe that the mark could be concealed with makeup. These findings show that for children as young as age 3, decisions about whether to tell the truth are influenced by the likelihood that the information would be helpful to the recipient. (shrink)

It is an ancient view, to be found even in Aristotle’s analysis of friendship, that the other is an alter ego, another myself. More recently, this conception has provoked spirited debate within and without the phenomenological tradition. It can be found in a wide variety of texts, from Husserl’s Cartesian Meditations to Thomas Nagel’s “What is it like to be a bat?” The basic position can be summarized as follows. Intentional experiences are subjective, first-person experiences, not objective, third-person experiences.

This article explores some of the ways in which ideas about and attempts to construct a European identity and sense of belonging inscribe an imaginary of Europe that is exclusionary and elitist. It suggests that the symbolic figure of ‘the immigrant woman’ is a container category that simultaneously signifies the non-European and tests and destabilizes claims to Europe's essential characteristics. It also argues that traces of this imaginary of Europe can be found in feminist scholarship on global care chains and (...) that the spatial category of ‘the domestic’ is the invisible seam that ties this scholarship to the hegemonic imaginary of Europe. (shrink)

This article explores the development of a novel biomedical research organism, and its potential to remake the species and spaces of translational medicine. The humanized mouse is a complex experimental object in which mice, rendered immunodeficient through genetic alteration, are engrafted with human stem cells in the hope of reconstituting a human immune system for biomedical research and drug testing. These chimeric organisms have yet to garner the same commentary from social scientists as other human–animal hybrid forms. Yet, they are (...) rapidly being positioned as central to translational medicine in immunological research and pharmaceutical development. This article explores the complex relations between species and spaces they seek to enact. Humanizing mice simultaneously moves these animal forms towards the intimate geographies of corporeal equivalence with humans and the expansive geographies of translational research. These multiple trajectories are achieved by the way humanized mice function as both uncertain ‘epistemic things’ and as expansive ‘collaborative things’, articulating mouse genetics with other research, notably stem cell science. In the context of post-genomics, their indeterminacy is critical to their collaborative value; their expansive potential follows as much from their biological openness as from specific expectations. Yet, these new research organisms have both accumulative and disruptive capacities, for there are patterns of interference between these trajectories, remaking boundaries between experimental practices and clinical contexts. (shrink)

Ubuntu, or humanness, has been theorized as a uniquely African contribution to the world. At the same time, others insist that it is a universal ethical principle. This paper particularly wants to look at a sub-theme of ubuntu studies, regarding how some of the authors and researchers have wanted to apply it to business, even suggesting that ubuntu can provide a model for ethical management principles that can also result in better outcomes for businesses. To approach business with an ethical (...) emphasis is clearly better than casting ethics aside in pursuit of profit without concern for human flourishing. But, can ubuntu management principles be used in a global capitalist framework, to soften the hard edges of cutthroat capitalism? Or does the ubuntu management approach without capitalist critique fall short of reaching the goal and practice of humanness? Additionally, perhaps the fault of current practices is not only due to the capitalist global economy, but also, an historical and a current global anti-black racism as well as sexism, which continues to skew the numbers of managers to greatly over-represent white males. This is due to historical privileging of men and the white race. We need to put forth our best efforts to ensure fair treatment of workers, who are valued as persons, and paid a good wage, with profits to go to them so that they can nourish and support their extended families. An ubuntu ethic could indeed be helpful as a guide for deciding which kinds of changes to the larger economic and political structures we should advocate and fight for (Publisher's website includes free full text). (shrink)

Narrative inquiry in a nursing practicum One approach to creating research‐based nursing education is to think and write narratively about the daily life of a BScN program student and her teacher in diverse settings and over time. Gail, as a nurse‐teacher, and Faith, as a nursing student and now Public Health Nurse, reconstruct their teaching–learning experiences in an integrated practicum in maternal–child health services as a narrative inquiry. After presenting this reconstruction of experience at a conference on maternal scholarship, (...) further inquiry into their experiences shows how narrative inquiry matters to construction of nursing praxis and to life‐long learning as a nurse. Teaching–learning relationships are seen as a template for a student's connections to people experiencing nursing care and to other clinicians. Construction of stories to live by that take into account becoming a nurse, constructing knowledge and enacting caring–healing nursing practices is illuminated through narrative inquiry. (shrink)

The paper surveys the lifetime achievements of Claude Sumner, S.J., a Canadian Jesuit who lived for 45 years in Ethiopia and devoted his life's work to collecting, documenting and evaluating Ethiopian philosophical texts and oral literature.

This article on the potential for patient online records access (ORA) to increase the likelihood of nocebo effects is timely, 1 given the recent introduction of full prospective records access for primary care patients in England. 2 Blease provides a convincing overview of the evidence for the nocebo effect and examines the complex interplay with health inequities. The article proposes two mechanisms for ORA augmenting nocebo effects through: (A) patients reading about possible negative outcomes of treatments and (B) a negative (...) clinician tone or less supportive content in the notes diminishing patient trust and setting up negative expectations. Blease notes a small percentage of those who had used ORA at least once during the previous year in one study reported feeling more worried about their medications, 3 and that those with mental health diagnoses were significantly more prone to this than those without such diagnoses.shrink)

This chapter offers a brief historical overview of the gendered mind/body dualism associated with the rationalist tradition, according to which women’s bodies have been viewed as a threat to reason and to ethics. Taking up critiques of this model offered by Beauvoir and Fanon, I maintain that the body of the Other makes an ethical claim upon us in the form of “bodily imperatives.” I conclude with a critical analysis of contemporary feminist ethics that seeks to move beyond the false (...) dichotomies of mind/body, reason/emotions, transcendence/immanence, and male/female dualisms. Assuming as their starting point the universality of human dependency and the debilitating reality of embodied oppression, contemporary feminist ethicists seek to overturn the sexist, racist, and ableist effects of a philosophical tradition that has always privileged some minds and bodies over others. (shrink)

The literature on epistemic injustice has been helpful for highlighting some of the epistemic harms that have long troubled those working in area studies that concern oppressed populations. Nonetheless, a good deal of this literature is oriented toward those in a position to perpetrate injustices, rather than those who historically have been harmed by them. This orientation, I argue, is ill-suited to the work of epistemic decolonization. In this essay, I call and hold attention to the epistemic interests of those (...) who are epistemically marginalized on account of relations of dominance and oppression. To do so, I draw on Kristie Dotson’s work, which uses a systems approach focused on epistemic agency. I develop Dotson’s insights further to argue that epistemic inclusions may be just as pernicious as epistemic exclusions Specifically, I highlight some of the ways in which epistemic agents can be included in epistemic systems in a manner that is epistemically exploitative—extracting epistemic labor coercively or in ways that are distinctly non-reciprocal. I then turn to María Lugones’ distinction between horizontal and vertical practices to discuss avenues of resisting both exclusions and inclusions that thwart the epistemic agency of marginalized knowers. (shrink)

Ability and achievement are not traits: they are relations. Mistaking traits for relations has a history even in science (our understanding of gravity). This mistake is possibly responsible for the lackluster performance of the results of our educational research when we have tried to use it to inform policy. It is particularly troublesome for interventions that target “children at risk.” The paper provides a quasi-formal outline of achievement as a relation and it then uses the outline to explain some problematic (...) research findings. (shrink)

(1995). A Feminist Sociologist Responds to Daniel's 'Exclusion and Emphasis Reframed as a Matter of Ethics' Ethics & Behavior: Vol. 5, No. 4, pp. 369-371.

A Sociology of Sex and Sexuality offers an historical sociological analysis of ideas about expressions of sexual desire, combining both primary and secondary historical and theoretical material with original research and popular imagery in the contemporary context. While some reference is made to the sexual ideology of Classical Antiquity and of early Christianity, the major focus of the book is on the development of ideas about sex and sexuality in the context of modernity. It questions the widespread assumption that the (...) anxieties and fears associated with old sexual mores have been overcome in the late twentieth century context, and asks whether the discourses of Queer sexual politics have successfully fractured the binary categories of heterosexuality and homosexuality. A Sociology of Sex and Sexuality will be of interest to students in the fields of sociology, sexual history, gender studies and cultural studies. (shrink)

Phenomenology, the philosophical method that seeks to uncover the taken-for-granted presuppositions, habits, and norms that structure everyday experience, is increasingly framed by ethical and political concerns. Critical phenomenology foregrounds experiences of marginalization, oppression, and power in order to identify and transform common experiences of injustice that render “the familiar” a site of oppression for many. In Fifty Concepts for a Critical Phenomenology, leading scholars present fresh readings of classic phenomenological topics and introduce newer concepts developed by feminist theorists, critical race (...) theorists, disability theorists, and queer and trans theorists that capture aspects of lived experience that have traditionally been neglected. By centering historically marginalized perspectives, the chapters in this book breathe new life into the phenomenological tradition and reveal its ethical, social, and political promise. This volume will be an invaluable resource for teaching and research in continental philosophy; feminist, gender, and sexuality studies; critical race theory; disability studies; cultural studies; and critical theory more generally. (shrink)

What initiates vertebrate limb development and induces limbs to form where they do? For several years the answer to this intriguing question has been framed in terms of a working model that limb induction depends on a dialogue between two members of the Fibroblast Growth Factor (FGF) family of intercellular signaling molecules, FGF8 and FGF10. Now, a recent paper has written roles for signals encoded by WNT genes, the vertebrate relatives of the Drosophila wingless gene, into the script.(1) BioEssays 23:865–868, (...) 2001. © 2001 John Wiley & Sons, Inc. (shrink)