The question of ‘who owns genetic information‘ is increasingly a focus of ethical inquiry. Applied to predictive testing, several recent critiques suggest that persons with a genetic disorder have a moral duty to disclose that information to other family members. The justification for this obligation is that genetic information belongs to and may benefit not only a single individual, but also members of a biological kinship. This paper considers this issue from a different vantage point: How does gender intersect with (...) the moral duty to disclose genetic information? Scholars have argued that gender is partly comprised of distinct assignments and assumptions of responsibility. Thus, there is a danger that gendered patterns of socialization will make women feel that they should take primary responsibility for disclosing genetic information to others. This article explores issues of responsibility and disclosure of risk information by drawing on an empirical study of women and men who have undergone genetic testing for hereditary breast/ovarian cancer. The research study suggests that disclosure of genetic information is a gendered activity, with both the benefits and burdens of this task falling primarily on women. It also illustrates that when disclosure is understood contextually, it is a far more complicated matter than when viewed through a theoretical lens. The article considers the relevance of these findings on ethical debate and genetic counselling practices. (shrink)

The question of ‘who owns genetic information‘ is increasingly a focus of ethical inquiry. Applied to predictive testing, several recent critiques suggest that persons with a genetic disorder have a moral duty to disclose that information to other family members. The justification for this obligation is that genetic information belongs to and may benefit not only a single individual, but also members of a biological kinship. This paper considers this issue from a different vantage point: How does gender intersect with (...) the moral duty to disclose genetic information? Scholars have argued that gender is partly comprised of distinct assignments and assumptions of responsibility. Thus, there is a danger that gendered patterns of socialization will make women feel that they should take primary responsibility for disclosing genetic information to others. This article explores issues of responsibility and disclosure of risk information by drawing on an empirical study of women and men who have undergone genetic testing for hereditary breast/ovarian cancer. The research study suggests that disclosure of genetic information is a gendered activity, with both the benefits and burdens of this task falling primarily on women. It also illustrates that when disclosure is understood contextually, it is a far more complicated matter than when viewed through a theoretical lens. The article considers the relevance of these findings on ethical debate and genetic counselling practices. (shrink)

Numerous issues confront women's healthcare today, among them the medicalization of women's bodies, cosmetic genital surgery, violence against women, HIV, perinatal mental health disorders. This volume uniquely explores such difficult topics and others at the intersection of clinical practice, policy, and bioethics in women's health care through a feminist ethics lens. With in-depth discussions of issues in women's reproductive health, it also broadens scholarship by responding to a wider array of ethical challenges that many women experience in accessing health care. (...) Contributions touch on many themes previously tackled by feminist ethics, but in new, contemporary ways. Some chapters expand into new fields in the bioethics literature, such as the ethical issues related to the care of Indigenous women, uninsured refugees and immigrants, women engaged in sex work, and those with HIV at different life stages and perinatal mental health disorders. Authors seek to connect theory and practice with users of the health system by including women's voices in their research. Bringing to bear their experience in active clinical practice in medicine, nursing, and ethics, the authors contemplate new conceptual approaches to important issues in women's healthcare, and make ethical practice recommendations for those grappling with these issues. Topical and up-to-date, this book provides a valuable resource for physicians, nurses, clinical ethicists, and researchers working in some of the most critical areas of women's health and applied ethics today. (shrink)

As ethics services have become more integrated into healthcare organizations, the controversy regarding the possible professionalization of healthcare ethics practices has re-emerged. Some of the debate focuses on whether healthcare ethics practice possesses the attributes of a ‘true profession.’ This study examines the history of the professions and the relevance of this historical material, as well as sociological insights, for contemporary concerns. It explores whether the mismatch between traditional models of professional knowledge and the knowledge foundation for healthcare ethics is (...) at the core of these concerns. It also takes the position that given the role healthcare ethics plays in assisting patients, families, healthcare providers, and others with complex moral decisions it is important to work towards developing standards that can be used to guide and evaluate the work. (shrink)

Potential conflicts between the roles of physicians and researchers have been described at the theoretical level in the bioethics literature (Czoli, et al., 2011). Physicians and researchers are generally in mutually distinct roles, responsible for patients and participants respectively. With increasing emphasis on integration of research into clinical settings, however, the role divide is sometimes unclear. Consequently, physician–researchers must consider and negotiate salient ethical differences between clinical– and research–based obligations (Miller et al, 1998). This paper explores the subjective experiences and (...) perspectives of 30 physician–researchers working in three Canadian paediatric settings. Drawing on qualitative interviews, it identifies ethical challenges and strategies used by physician–researchers in managing dual roles. It considers whether competing obligations could have both positive and adverse consequences for both physician–researchers and patients. Finally, we discuss how empirical work, which explores the perspectives of those engaged in research and clinical practice, can lead the way to understanding and promoting best practice. (shrink)

Physician-researchers are bound by professional obligations stemming from both the role of the physician and the role of the researcher. Currently, the dominant models for understanding the relationship between physician-researchers' clinical duties and research duties fit into three categories: the similarity position, the difference position and the middle ground. The law may be said to offer a fourth.

The question of ‘who owns genetic information‘ is increasingly a focus of ethical inquiry. Applied to predictive testing, several recent critiques suggest that persons with a genetic disorder have a moral duty to disclose that information to other family members. The justification for this obligation is that genetic information belongs to and may benefit not only a single individual, but also members of a biological kinship. This paper considers this issue from a different vantage point: How does gender intersect with (...) the moral duty to disclose genetic information? Scholars have argued that gender is partly comprised of distinct assignments and assumptions of responsibility. Thus, there is a danger that gendered patterns of socialization will make women feel that they should take primary responsibility for disclosing genetic information to others. This article explores issues of responsibility and disclosure of risk information by drawing on an empirical study of women and men who have undergone genetic testing for hereditary breast/ovarian cancer. The research study suggests that disclosure of genetic information is a gendered activity, with both the benefits and burdens of this task falling primarily on women. It also illustrates that when disclosure is understood contextually, it is a far more complicated matter than when viewed through a theoretical lens. The article considers the relevance of these findings on ethical debate and genetic counselling practices. (shrink)

Changing Methods is a collection of original essays by feminist practitioners, scholars, and activists. The authors show why "the method question" has moved to the top of many feminist research and interpretive research strategies, and engage in thinking about how ideas and actions have developed within complex social circumstances. The essays in this book challenge the tradition that has allowed abstracted, formalized versions of the ideas and experiences of privileged white men to set standards for how everyone should conduct themselves. (...) The authors use new-found knowledge to displace the dominant ideology constructed around race, class, gender, and heterosexual privilege, and then propose innovative feminist-informed analyses of subjects as diverse as political change, critical linguistics, child care, religious studies, and violence against women. (shrink)

Que les seuls régimes politiques légitimes soient les démocraties représentatives contemporaines a acquis la force d’une évidence. Pourtant, à leurs origines, ces régimes représentatifs n’avaient pas vocation à être démocratiques : leurs fondateurs les avaient même imaginés pour prévenir l’émergence de formes de gouvernement démocratique. Partant de cet oubli, l’article propose de revenir sur l’histoire de l’association de la démocratie et de la représentation, des révolutions américaine et française à la première moitié du xix e siècle. S’attachant plus particulièrement aux (...) usages de la notion de démocratie et de ses dérivés (« démocrate », « démocratique »), il s’attache à mettre en évidence la manière dont celle-ci, d’abord figure repoussoir dans l’ordre politique, est finalement devenue « maître-mot ». (shrink)

Faisant de la démocratie représentative la forme idéalement la meilleure de gouvernement, la pensée politique de Mill se distingue d’abord en tant qu’elle dépasse l’alternative généralement posée entre régime représentatif et démocratie directe. Néanmoins, la forme de gouvernement qu’il élabore pose un certain nombre de problèmes, puisque les principes sur lesquels elle repose, principe de compétence d’une part, principe de participation d’autre part, sont, au moins a priori, difficilement conciliables. Cet article entend montrer que le système politique pensé par Mill, (...) loin d’être contradictoire, nous donne des outils solides pour penser les démocraties représentatives. (shrink)

On trouve dans les écrits de Mill une légitimation circonstanciée de la révolution. Ce que doivent considérer celles et ceux que tente l’affrontement armé, c’est la nature des circonstances historiques, mais aussi leur propre force et leur degré de maturité politique, de manière à évaluer l’opportunité et la justice de la violence révolutionnaire. Il s’agira ici d’examiner les tensions et les évolutions de la pensée de Mill à l’égard de la « révolution », comme idée politique, comme événement historique, aussi (...) bien que comme processus long de transformation individuelle ou collective. (shrink)

These H, British Library Harl. 647, was written in Lorraine but crossed before AD 1000 to England, where it later belonged to St. Augustine's Canterbury; Cicero's verses in minuscule occupy the foot of each page, and the rest is given over to the appropriate illustration, painted only at the extremities and filled out to the requisite shape with scholia from Hyginus in small capitals. D, Dresden Dc 183, left France not before 1573; illustrations and scholia occur only in a (...) preceding work, the scholia Sangermanensia. (shrink)

These H, British Library Harl. 647, was written in Lorraine but crossed before AD 1000 to England, where it later belonged to St. Augustine's Canterbury; Cicero's verses in minuscule occupy the foot of each page, and the rest is given over to the appropriate illustration, painted only at the extremities and filled out to the requisite shape with scholia from Hyginus in small capitals. D, Dresden Dc 183, left France not before 1573; illustrations and scholia occur only in a (...) preceding work, the scholia Sangermanensia. (shrink)

Biologists, historians, lawyers, art historians, and literary critics all voice arguments in the critical dialogue about what constitutes evidence in research and scholarship. They examine not only the constitution and "blurring" of disciplinary boundaries, but also the configuration of the fact-evidence distinctions made in different disciplines and historical moments the relative function of such concepts as "self-evidence," "experience," "test," "testimony," and "textuality" in varied academic discourses and the way "rules of evidence" are themselves products of historical developments. The essays and (...) rejoinders are by Terry Castle, Lorraine Daston, Carlo Ginzburg, Ian Hacking, Mark Kelman, R. C. Lewontin, Pierre Vidal-Naquet, Mary Poovey, Donald Preziosi, Simon Schaffer, Joan W. Scott, Eve Kosofsky Sedgwick, and Barbara Herrnstein Smith. The critical responses are by Lauren Berlant, James Chandler, Jean Comaroff, Arnold I. Davidson, Harry D. harootunian, Elizabeth Helsinger, Thomas C. Holt, Francoise Meltzer, Robert J. Richards, Lawrence Rothfield, Joel Snyder, Cass R. Sunstein, and William Wimsatt. (shrink)

During World War II, Niels Bohr realized that the nature of war had changed irrevocably due to the introduction of the atomic bomb. This, in his opinion, meant that nation states had to be open about nuclear knowledge and negotiate toward peace. The bomb presented a threat, yet at the same time, an opportunity, as Bohr would argue in his characteristic way. It is not too difficult to point to the epistemological origin of Bohr’s argument: One easily identifies resonances with (...) his ideas on “complementarity” from quantum mechanics. According to Bohr’s doctrine of complementarity, a quantum mechanical object shows certain qualities depending on the experimental perspective from which it is studied; and these qualities may be mutually exclusive. However, they should in fact be looked upon as “complementary” properties that together make up the full picture of the object under investigation.Initially, Bohr could express his ideas to the highest circles of power. This would soon change, howe .. (shrink)

Objectivity has a history, and it is full of surprises. In Objectivity, Lorraine Daston and Peter Galison chart the emergence of objectivity in the mid-nineteenth-century sciences--and show how the concept differs from its alternatives, truth-to-nature and trained judgment. This is a story of lofty epistemic ideals fused with workaday practices in the making of scientific images. From the eighteenth through the early twenty-first centuries, the images that reveal the deepest commitments of the empirical sciences--from anatomy to crystallography--are those featured (...) in scientific atlases, the compendia that teach practitioners what is worth looking at and how to look at it. Galison and Daston use atlas images to uncover a hidden history of scientific objectivity and its rivals. Whether an atlas maker idealizes an image to capture the essentials in the name of truth-to-nature or refuses to erase even the most incidental detail in the name of objectivity or highlights patterns in the name of trained judgment is a decision enforced by an ethos as well as by an epistemology. As Daston and Galison argue, atlases shape the subjects as well as the objects of science. To pursue objectivity--or truth-to-nature or trained judgment--is simultaneously to cultivate a distinctive scientific self wherein knowing and knower converge. Moreover, the very point at which they visibly converge is in the very act of seeing not as a separate individual but as a member of a particular scientific community. Embedded in the atlas image, therefore, are the traces of consequential choices about knowledge, persona, and collective sight. Objectivity is a book addressed to anyone interested in the elusive and crucial notion of objectivity-- and in what it means to peer into the world scientifically. Lorraine Daston is Director at the Max Planck Institute for the History of Science in Berlin, Germany. She is the coauthor of Wonders and the Order of Nature, 1150-1750 and the editor of Things That Talk: Object Lessons from Art and Science. Peter Galison is Pellegrino University Professor of the History of Science and of Physics at Harvard University. He is the author of Einstein's Clocks, Poincaré's Maps: Empires of Time, How Experiments End, and Image and Logic: A Material Culture of Microphysics, and other books, and coeditor of The Architecture of Science. (shrink)

The path-breaking Encyclopedia of Feminist Theories is an accessible, multidisciplinary insight into the complex field of feminist thought. The Encyclopedia contains over 500 authoritative entries commissioned from an international team of contributors and includes clear, concise and provocative explanations of key themes and ideas. Each entry contains cross references and a bibliographic guide to further reading; over 50 biographical entries provide readers with a sense of how the theories they encounter have developed out of the lives and situations of their (...) authors. Areas covered: * traditional taxonomies of feminist theory (eg socialist thought) * theoretical subdivisions (eg ecofeminism and feminist spirituality) * discipline-specific issues (eg philosophy and anthropology) * the conceptual apparatus of gender theory (eg biologism) * methodologies (eg deconstruction and narrative theory) * intersections (eg with racial theory, queer theory) * political issues (eg citizenship, reproductive rights). (shrink)

Having adequate knowledge of the world is not just a matter of survival but also one of obligation. This obligation to "know well" is what philosophers have termed "epistemic responsibility." In this innovative and eclectic study, Lorraine Code explores the possibilities inherent in this concept as a basis for understanding human attempts to know and understand the world and for discerning the nature of intellectual virtue. By focusing on the idea that knowing is a creative process guided by imperatives (...) of epistemic responsibility, Code provides a fresh perspective on the theory of knowledge. From this new perspective, Code poses questions about knowledge that have a different focus from those traditionally raised in the two leading epistemological theories, foundationalism and coherentism. While not rejecting these approaches, this new position moves away from a primary concentration on determinate products and towards an examination of ever-changing processes. Arguing that knowledge never exists as an ungrounded abstraction but rather emerges through dialogue between variously authoritative "knowers" situated within particular social and historical contexts, she draws extensively on examples from lived social experience to illustrate the ways in which human beings have long tried to recognize and meet their epistemic responsibilities. This edition of Epistemic Responsibility includes a new preface from Lorraine Code"--Provided by the publisher. (shrink)

Arguing that ecological thinking can animate an epistemology capable of addressing feminist, multicultural, and other post-colonial concerns, this book critiques the instrumental rationality, hyperbolized autonomy, abstract individualism, and exploitation of people and places that western epistemologies of mastery have legitimated. It proposes a politics of epistemic location, sensitive to the interplay of particularity and diversity, and focused on responsible epistemic practices. Starting from an epistemological approach implicit in Rachel Carson’s scientific projects, the book draws, constructively and critically, on ecological theory (...) and practice, on (post-Quinean) naturalized epistemology, and on feminist and post-colonial theory. Analyzing extended examples from developmental psychology, from medicine and law, and from circumstances where vulnerability, credibility, and public trust are at issue, the argument addresses the constitutive part played by an instituted social imaginary in shaping and regulating human lives. The practices and examples discussed invoke the responsibility requirements central to this text’s larger purpose of imagining, crafting, articulating a creative, innovative, instituting social imaginary, committed to interrogating entrenched hierarchical social structures, en route to enacting principles of ideal cohabitation. (shrink)

Prologue: objectivity shock -- Epistemologies of the eye -- Blind sight -- Collective empiricism -- Objectivity is new -- Histories of the scientific self -- Epistemic virtues -- The argument -- Objectivity in shirtsleeves -- Truth-to-nature -- Before objectivity -- Taming nature's variability -- The idea in the observation -- Four-eyed sight -- Drawing from nature -- Truth-to-nature after objectivity -- Mechanical objectivity -- Seeing clear -- Photography as science and art -- Automatic images and blind sight -- Drawing against (...) photography -- Self-surveillance -- Ethics of objectivity -- The scientific self -- Why objectivity? -- The scientific subject -- Kant among the scientists -- Scientific personas -- Observation and attention -- Knower and knowledge -- Structural objectivity -- Objectivity without images -- The objective science of mind -- The real, the objective, and the communicable -- The color of subjectivity -- What even a god could not say -- Dreams of a neutral language -- The cosmic community -- Trained judgment -- The uneasiness of mechanical reproduction -- Accuracy should not be sacrificed to objectivity -- The art of judgment -- Practices and the scientific self -- Representation to presentation -- Seeing is being : truth, objectivity, and judgment -- Seeing is making : nanofacture -- Right depiction. (shrink)