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)

Large-scale sequencing tests, including whole-exome and whole-genome sequencing, are rapidly moving into clinical use. Sequencing is already being used clinically to identify therapeutic opportunities for cancer patients who have run out of conventional treatment options, to help diagnose children with puzzling neurodevelopmental conditions, and to clarify appropriate drug choices and dosing in individuals. To evaluate and support clinical applications of these technologies, the National Human Genome Research Institute and National Cancer Institute have funded studies on clinical and research sequencing under (...) the Clinical Sequencing Exploratory Research program as well as studies on return of results. Most of these studies use sequencing in real-world clinical settings and collect data on both the application of sequencing and the impact of receiving genomic findings on study participants. They are occurring in the context of controversy over how to obtain consent for exome and genome sequencing. (shrink)

SummaryThis study seeks to investigate what influences intelligence in early childhood. The Singapore Cohort Study of the Risk Factors of Myopia is used to assess determinants of childhood IQ and changes in IQ. This longitudinal data set, collected in 1999, includes a wealth of demographic, socioeconomic and prenatal characteristics. The richness of the data allows various econometric approaches to be employed, including the use of ordered and multinomial logit analysis. Mother's education is found to be a consistent and key determinant (...) of childhood IQ. Father's education and school quality are found to be key drivers for increasing IQ levels above the average sample movement. (shrink)

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)

Offering intensive care to neonates who have conditions that carry extremely poor prognoses is a source of great contention amongst neonatologists. The concept of best interests is commonly used as a rationale for refusing such care, despite the fact that parents of these infants often have a different view of what best interests means. This article takes up the question of what best interests should incorporate for infants with lethal conditions not curable with intensive care, and how and who should (...) decide which treatment options should be implemented. Based on our recommendation that parents be apprised of the basis upon which physicians are evaluating treatment options, we offer a framework that allows all relevant parties to approach the issue of what is appropriate treatment from a similar place. We maintain that this approach will increase transparency, dialogue, understanding, and trust, which, in turn, may result in greater consensus. (shrink)

Delivering high quality genomics-informed care to patients requires accurate test results whose clinical implications are understood. While other actors, including state agencies, professional organizations, and clinicians, are involved, this article focuses on the extent to which the federal agencies that play the most prominent roles — the Centers for Medicare and Medicaid Services enforcing CLIA and the FDA — effectively ensure that these elements are met and concludes by suggesting possible ways to improve their oversight of genomic testing.

In this article we investigate how speakers contribute to the interactive rise and fall of emotion in problematic interactions in a data set of in-bound telephone conversations collected from call centres in the Philippines. These interactions are between the Filipino Customer Service Representatives and American clients who initiate the calls to seek information, clarification, or resolution to a problem. The study draws on Appraisal theory to analyse the contribution of the caller and the CSR to initiating, maintaining and adjusting the (...) interpersonal intensity of the interaction. Findings point to a limited reliance on explicit attitude on the part of both speakers, with attitude more often implied rather than expressed explicitly. Of note, too, is the interdependence of the attitudinal choices on the part of each speaker, and the role that concessive contractors such as just, already, once, yet and actually, as well as moments of silence can play in the management of the emotive intensity. While we intend the outcomes to make a contribution to professional training in the industry, we also look beyond that context to contribute in theoretical and methodological terms to the analysis of interactions in other contexts where problems need to be resolved through talk. (shrink)

Background Currently there is increasing recognition of the need for research in developing countries where disease burden is high. Understanding the role of local factors is important for undertaking ethical research in developing countries. We explored factors relating to information and communication during the process of informed consent, and the approach that should be followed for gaining consent. The study was conducted prior to a family-based genetic study among people with podoconiosis (non-filarial elephantiasis) in southern Ethiopia. Methodology/Principal Findings We adapted (...) a method of rapid assessment validated in The Gambia. The methodology was entirely qualitative, involving focus-group discussions and in-depth interviews. Discussions were conducted with podoconiosis patients and non-patients in the community, fieldworkers, researchers, staff of the local non-governmental organisation (NGO) working on prevention and treatment of podoconiosis, and community leaders. We found that the extent of use of everyday language, the degree to which expectations of potential participants were addressed, and the techniques of presentation of information had considerable impact on comprehension of information provided about research. Approaching podoconiosis patients via locally trusted individuals and preceding individual consent with community sensitization were considered the optimal means of communication. Prevailing poverty among podoconiosis patients, the absence of alternative treatment facilities, and participants' trust in the local NGO were identified as potential barriers for obtaining genuine informed consent. Conclusions Researchers should evaluate the effectiveness of consent processes in providing appropriate information in a comprehensible manner and in supporting voluntary decision-making on a study-by-study basis. (shrink)

These essays apply influential, pathbreaking psychological studies about women's lives to literature. In their analyses of fictional portraits, contributors both challenge and confirm psychological theories about female identity, about 'connection/separation' as developmental catalysts, and about the impact of gender on 'voice,' moral decision-making, and epistemology in relation to classical and contemporary literary texts, written by both women and men.

BackgroundThe consent process for a genetic study is challenging when the research is conducted in a group stigmatized because of beliefs that the disease is familial. Podoconiosis, also known as 'mossy foot', is an example of such a disease. It is a condition resulting in swelling of the lower legs among people exposed to red clay soil. It is a very stigmatizing problem in endemic areas of Ethiopia because of the widely held opinion that the disease runs in families and (...) is untreatable. The aim of this study was to explore the impact of social stigma on the process of obtaining consent for a study on the genetics of podoconiosis in Southern Ethiopia.MethodsWe adapted a rapid assessment tool validated in The Gambia. The methodology was qualitative involving focus-group discussions (n = 4) and in-depth interviews (n = 25) with community members, fieldworkers, researchers and staff of the Mossy Foot Treatment and Prevention Association (MFTPA) working on prevention and treatment of podoconiosis.ResultsWe found that patients were afraid of participation in a genetic study for fear the study might aggravate stigmatization by publicizing the familial nature of the disease. The MFTPA was also concerned that discussion about the familial nature of podoconiosis would disappoint patients and would threaten the trust they have in the organization. In addition, participants of the rapid assessment stressed that the genetic study should be approved at family level before prospective participants are approached for consent. Based on this feedback, we developed and implemented a consent process involving community consensus and education of fieldworkers, community members and health workers. In addition, we utilized the experience and established trust of the MFTPA to diminish the perceived risk.ConclusionThe study showed that the consent process developed based on issues highlighted in the rapid assessment facilitated recruitment of participants and increased their confidence that the genetic research would not fuel stigma. Therefore, investigators must seek to assess and address risks of research from prospective participants' perspectives. This involves understanding the issues in the society, the culture, community dialogues and developing a consent process that takes all these into consideration. (shrink)

The American Journal of Bioethics, Volume 12, Issue 10, Page 9-10, October 2012.

The informed consent process for genetic testing does not commonly address preferences regarding disclosure of results in the event of the patient's death. Adults being tested for familial colorectal cancer were asked whether they want their exome sequencing results disclosed to another person in the event of their death prior to receiving the results. Of 78 participants, 92% designated an individual and 8% declined to. Further research will help refine practices for informed consent.

Preparing the Next Generation of Oral Historians is an invaluable resource to educators seeking to bring history alive for students at all levels. Filled with insightful reflections on teaching oral history, it offers practical suggestions for educators seeking to create curricula, engage students, gather community support, and meet educational standards. By the close of the book, readers will be able to successfully incorporate oral history projects in their own classrooms.

Abnormalities in the ability of cells to properly degrade proteins have been identified in many neurodegenerative diseases. Recent work has implicated synaptojanin 1 (SynJ1) in Alzheimer's disease and Parkinson's disease, although the role of this polyphosphoinositide phosphatase in protein degradation has not been thoroughly described. Here, we dissected in vivo the role of SynJ1 in endolysosomal trafficking in zebrafish cone photoreceptors using a SynJ1‐deficient zebrafish mutant, nrca14. We found that loss of SynJ1 leads to specific accumulation of late endosomes and (...) autophagosomes early in photoreceptor development. An analysis of autophagic flux revealed that autophagosomes accumulate because of a defect in maturation. In addition we found an increase in vesicles that are highly enriched for PI(3)P, but negative for an early endosome marker in nrca14 cones. A mutational analysis of SynJ1 enzymatic domains found that activity of the 5'phosphatase, but not the Sac1 domain, is required to rescue both aberrant late endosomes and autophagosomes. Finally, modulating activity of the PI(4,5)P2 regulator, Arf6, rescued the disrupted trafficking pathways in nrca14 cones. Our study describes a specific role for SynJ1 in autophagosomal and endosomal trafficking and provides evidence that PI(4,5)P2 participates in autophagy in a neuronal cell type. -/- . (shrink)

In The Alchemy of Race and Rights Patricia Williams notes that when people of color are asked to understand such practices as racial profiling by putting themselves in the shoes of white people, they are, in effect, being asked to, ‘look into the mirror of frightened white faces for the reality of their undesirability’ (1992, 46). While we often see understanding another as ethically and epistemically virtuous, in this paper I argue that it is wrong in some cases to ask (...) another to attempt to understand certain positions or lines of thought. In developing my argument I draw on the work of María Lugones to argue for a view of agency that is epistemically interdependent. I examine the case described by Patricia Williams to demonstrate specifically how the understanding requested in this case unfairly undermines both epistemic and non-epistemic agency. I distinguish appropriate requests for understanding from inappropriate requests so as to make clear that I am not suggesting that it is wrong to make such requests when the understanding sought after is difficult, painful, or even when it forces one to reconsider the meaning of one’s actions. Finally, I examine an example from Susan Brison to show how strategic refusals to understand may provide a pathway toward new ways of knowing and being in resistance to oppressive regimes. (shrink)

The articles in this special issue of the Journal of Speculative Philosophy were originally presented at the fifty-eighth annual meeting of the Society for Phenomenology and Existential Philosophy in Pittsburgh, Pennsylvania, October 31 to November 2, 2019. The meeting was hosted by Duquesne University. It featured two outstanding plenary presentations that bear mentioning even though they are not reproduced in these pages: Susan Stryker's "How Being Trans Made Me a Philosopher!" and Robert Brandom's "Magnanimity, Heroism, and Agency: Recognition as (...) Recollection." Stryker explained in her talk how she came to recognize and enact her identity as a trans woman, and to publish her pathbreaking paper, "My Words... (shrink)

Fifteen leading philosophers explore a set of themes from the pioneering work of Gail Fine and Terence Irwin in the history of philosophy. They discuss knowledge, rhetoric, freedom and practical reason, virtue and the good life, ethics and politics in Plato and Aristotle and beyond.

Fifteen leading philosophers explore a set of themes from the pioneering work of Gail Fine and Terence Irwin, in ancient philosophy but also in later periods and in systematic philosophy. The contributors discuss knowledge, rhetoric, freedom and practical reason, virtue and the good life, ethics and politics in Plato and Aristotle and beyond. The editors offer an introduction charting the scholarly contributions of Fine and Irwin and assessing their individual and joint impact, together with a complete bibliography of their (...) writings. (shrink)

Selections seeks to provide an accurate and readable translation that will allow the reader to follow Aristotle's use of crucial technical terms and to grasp the details of his argument. Unlike anthologies that combine translations by many hands, this volume includes a fully integrated set of translations by a two-person team. The glossary--the most detailed in any edition--explains Aristotle's vocabulary and indicates the correspondences between Greek and English words. Brief notes supply alternative translations and elucidate difficult passages.

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)

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)

Plato on Knowledge and Forms brings together a set of connected essays by Gail Fine, in her main area of research since the late 1970s: Plato's metaphysics and epistemology. She discusses central issues in Plato's metaphysics and epistemology, issues concerning the nature and extent of knowledge, and its relation to perception, sensibles, and forms; and issues concerning the nature of forms, such as whether they are universals or particulars, separate or immanent, and whether they are causes. A specially written (...) introduction draws together the themes of the volume, which will reward the attention of anyone interested in Plato or in ancient metaphysics and epistemology. (shrink)

After the success of the hardback, students and academics will welcome the publication of this book in paperback. The aim of the book is to explore the connection between two perspectives that have had a profound effect upon contemporary thought: post–modernism and feminism. Through bringing together and systematically analysing the relations between these, Hekman is able to make a major intervention into current debates in social theory and philosophy. The critique of Enlightenment knowledge, she argues, is at the core of (...) both post–modernism and feminism. Each also offers a basis for critical reflections about the other. In particular, post–modern philosophy provides a means of criticizing aspects of contemporary feminism and thus contributing to the development of a more sophisticated approach to current feminist issues. (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)

This paper is a counter to the view that names are always predicates with the same extension as a metalinguistic predicate with the form “is a thing called “N”” (the Predicate View). The Predicate View is in opposition to the Referential View of names. In this paper, I undermine one argument for the Predicate View. The Predicate View’s adherents take examples of uses of names that have the surface appearance of a predicate and generalise from these to treat uses of (...) names that do not have the surface appearance of a predicate. They show that the Predicate View can provide a unified account of these two uses and assume that the Referential account cannot. I propose an alternative view of names, the Polysemy View. This view allows one to resist the pressure to generalise from the cases with the surface appearance of predicates to all uses of names while nevertheless providing connections between the uses. On the Polysemy View names are not, in their core use, metalinguistic predicates. Names are predominantly referring expressions but they also freelance as metalinguistic predicates on occasion. They have a double life. This double life is possible because of the pragmatic and conventional connections between the two aspects of that life. My main aim in this paper is to show that the Predicate View is not the only view that can give a good account of apparently predicative uses of names. In addition, I offer some inconclusive reasons to prefer the Polysemy View over the Predicate View. My paper assumes a background framework that the Predicate and Referentialist Views share and I do not attempt to justify that framework. I ignore many other views of names (notably descriptivist views and relevance theoretic views) in order to focus on the debate between these two opponents. (shrink)

The Rejected Body argues that feminist theorizing has been skewed toward non-disabled experience, and that the knowledge of people with disabilities must be integrated into feminist ethics, discussions of bodily life, and criticism of the cognitive and social authority of medicine. Among the topics it addresses are who should be identified as disabled; whether disability is biomedical, social or both; what causes disability and what could 'cure' it; and whether scientific efforts to eliminate disabling physical conditions are morally justified. Wendell (...) provides a remarkable look at how cultural attitudes towards the body contribute to the stigma of disability and to widespread unwillingness to accept and provide for the body's inevitable weakness. (shrink)

The IMF, World Bank, and former colonial powers have put pressure on African countries to adopt multiparty democracy. Because of this pressure, many formerly one‐party states as well as some military dictatorships have embraced Western and Parliamentarian democratic forms. But does this mean that democracy has succeeded in Africa? Ernest Wamba‐dia‐Wamba of the University of Dar‐es‐Saalam and CODESRIA argues that embracing Western paradigms in an unthinking fashion will not bring real democracy, i.e. people's liberation. He advances criticisms of party politics (...) and statism, and suggests that African palaver and people's movements are a surer site of political action. In his criticisms of representative government he parallels the thoughts and criticism of Hannah Arendt. Arendt advocated a council system that shares many of the attributes of African palaver communities. By consulting the criticisms of Arendt and Wamba‐dia‐Wamba, we can see that an easy optimism about the multiparty system is unfounded. (shrink)

Only human beings have a rich conceptual repertoire with concepts like tort, entropy, Abelian group, mannerism, icon and deconstruction. How have humans constructed these concepts? And once they have been constructed by adults, how do children acquire them? While primarily focusing on the second question, in The Origin of Concepts , Susan Carey shows that the answers to both overlap substantially. Carey begins by characterizing the innate starting point for conceptual development, namely systems of core cognition. Representations of core (...) cognition are the output of dedicated input analyzers, as with perceptual representations, but these core representations differ from perceptual representations in having more abstract contents and richer functional roles. Carey argues that the key to understanding cognitive development lies in recognizing conceptual discontinuities in which new representational systems emerge that have more expressive power than core cognition and are also incommensurate with core cognition and other earlier representational systems. Finally, Carey fleshes out Quinian bootstrapping, a learning mechanism that has been repeatedly sketched in the literature on the history and philosophy of science. She demonstrates that Quinian bootstrapping is a major mechanism in the construction of new representational resources over the course of childrens cognitive development. Carey shows how developmental cognitive science resolves aspects of long-standing philosophical debates about the existence, nature, content, and format of innate knowledge. She also shows that understanding the processes of conceptual development in children illuminates the historical process by which concepts are constructed, and transforms the way we think about philosophical problems about the nature of concepts and the relations between language and thought. (shrink)

This paper uses the figure of the inbred laboratory mouse to reflect upon the management and mobilization of biological difference in the contemporary biosciences. Working through the concept of shifting experimental systems, the paper seeks to connect practices concerned with standardization and control in contemporary research with the emergent and stochastic qualities of biological life. Specifically, it reviews the importance of historical narratives of standardization in experimental systems based around model organisms, before identifying a tension in contemporary accounts of the (...) reproduction and differentiation of inbred mouse strains within them. Firstly, narratives of new strain development, foregrounding personal biography and chance discovery, attest to the contingency and situatedness of apparently universal biotechnological production. Secondly, discoveries of unexpected animal litters challenge efforts to standardize mouse phenotypes and control the reproduction of murine strains over space. The co-existence of these two narratives draws attention to the importance of and interplay between both chance and control, determination and emergence, and the making and moving of experimental life in biomedical research. The reception or denial of such biological excess reflects the distribution of agencies and the emerging spatialities of the global infrastructures of biotechnological development, with implications for future relations between animal lives and human becomings in experimental practices. (shrink)

The Unity of Reason is the first major study of Kant's account of reason. It argues that Kant's wide-ranging interests and goals can only be understood by redirecting attention from epistemological questions of his work to those concerning the nature of reason. Rather than accepting a notion of reason given by his predecessors, a fundamental aim of Kant's philosophy is to reconceive the nature of reason. This enables us to understand Kant's insistence on the unity of theoretical and practical reason (...) as well as his claim that his metaphysics was driven by practical and political ends. Neiman begins by discussing the historical roots of Kant's conception of reason, and by showing Kant's solution to problems which earlier conceptions left unresolved. Kant's notion of reason itself is examined through a discussion of all the activities Kant attributes to reason. In separate chapters discussing the role of reason in science, morality, religion, and philosophy, Neiman explores Kant's distinctions between reason and knowledge, and his difficult account of the regulative principles of reason. Through examination of these principles in Kant's major and minor writings, The Unity of Reason provides a fundamentally new perspective on Kant's entire work. (shrink)

The article examines the role of ethnic favoritism in maldistribution of national resources in Kenya and discusses two broad proposals for attacking such corruption. Evidence drawn from research in Kenya disproves the view of Chabal and Daloz, who argue that Africans prefer to distribute goods according to ethnic ties, and shows that frustration with the lack of alternatives to such a system, rather than enthusiasm for it, drives cooperation with corrupt maldistribution. One solution to the problem is to decentralize government (...) so that resources are retained locally. A second solution is to attack the culture of appropriation and push for a fair evaluation of needs and the equitable distribution of national resources to where they are needed most. Drawing on the ideas of Hannah Arendt, the article proposes a modified federalism where government is small enough to enlist the help and support of locals but powerful enough to provide funds to impoverished sectors of the country. (shrink)

This editorial critically engages with the understanding of openness by attending to how notions of presence and absence come bundled together as part of efforts to make open. This is particularly evident in contemporary discourse around data production, dissemination, and use. We highlight how the preoccupations with making data present can be usefully analyzed and understood by tracing the related concerns around what is missing, unavailable, or invisible, which unvaryingly but often implicitly accompany debates about data and openness.

This book opens the door to the effects of intellectual, educational, and economic colonization of young children throughout the world. Using a postcolonial lens on current educational practices, the authors hope to lift those practices out of reproducing traditional power structures and push our thinking beyond the adult/child dichotomy into new possibilities for the lives that are created with children.