The multifaceted work of the late Susan Leigh Star is explored through a selection of her writings and essays by friends and colleagues. Susan Leigh Star (1954–2010) was one of the most influential science studies scholars of the last several decades. In her work, Star highlighted the messy practices of discovering science, asking hard questions about the marginalizing as well as the liberating powers of science and technology. In the landmark work Sorting Things Out, Star and Geoffrey Bowker revealed the (...) social and ethical histories that are deeply embedded in classification systems. Star's most celebrated concept was the notion of boundary objects: representational forms—things or theories—that can be shared between different communities, with each holding its own understanding of the representation. Unfortunately, Leigh was unable to complete a work on the poetics of infrastructure that further developed the full range of her work. This volume collects articles by Star that set out some of her thinking on boundary objects, marginality, and infrastructure, together with essays by friends and colleagues from a range of disciplines—from philosophy of science to organization science—that testify to the wide-ranging influence of Star's work. Contributors Ellen Balka, Eevi E. Beck, Dick Boland, Geoffrey C. Bowker, Janet Ceja Alcalá, Adele E. Clarke, Les Gasser, James R. Griesemer, Gail Hornstein, John Leslie King, Cheris Kramarae, Maria Puig de la Bellacasa, Karen Ruhleder, Kjeld Schmidt, Brian Cantwell Smith, Susan Leigh Star, Anselm L. Strauss, Jane Summerton, Stefan Timmermans, Helen Verran, Nina Wakeford, Jutta Weber. (shrink)

Following extensive examination of published and unpublished materials, we provide a history of the use of dexamethasone in pregnant women at risk of carrying a female fetus affected by congenital adrenal hyperplasia (CAH). This intervention has been aimed at preventing development of ambiguous genitalia, the urogenital sinus, tomboyism, and lesbianism. We map out ethical problems in this history, including: misleading promotion to physicians and CAH-affected families; de facto experimentation without the necessary protections of approved research; troubling parallels to the history (...) of prenatal use of diethylstilbestrol (DES); and the use of medicine and public monies to attempt prevention of benign behavioral sex variations. Critical attention is directed at recent investigations by the U.S. Food and Drug Administration (FDA) and Office of Human Research Protections (OHRP); we argue that the weak and unsupported conclusions of these investigations indicate major gaps in the systems meant to protect subjects of high-risk medical research. (shrink)

The mutual interaction and interdependence of race, class, and gender create profound political dilemmas for feminist activists. How can we create coherent, inclusive political movements when the very oppressions we seek to dismantle also divide us internally? This article seeks answers to this question by exploring the history of the Southeast Women's Employment Coalition, which throughout the 1980s sought to unify working-class women in the South across the divide of race. The article concludes that gender is insufficient to effect political (...) unity among racially diverse women, but that a “politics of solidarity,” based on an appreciation of the intersections of race, gender, and class, is possible. (shrink)

The question of a genealogy of race and gender is first and foremost a question of methodology. By bringing to bear the critical tools provided by Foucauldian methodology on the construction of race and gender in the specific historical case of Levittown, this chapter explores the manner in which the stories that inform our sense of “the way things are,” are shaped historically. Moreover, the chapter argues that the significance of the institutions and discourses becomes apparent only once they are (...) placed within the context of the play of relations of power and the deployment of bodies of knowledge. A genealogical analysis of Levittown reveals that the concepts of race and gender are not only essential to any conception of modern subjectivity, but also for the products of a network of relations of power. (shrink)

This is the first book-length study of the conception of emotions in premodern, or more specifically, pre-Han Chinese philosophical traditions, ranging from the early-5th to the late-3rd centuries BCE. This era is known as the "Warring States period" in China and marked by the flourishing of a number of different schools of philosophers who advocated their visions of how society should be run. The author looks at wide-ranging views about the nature of emotions and their proper role in moral life (...) espoused by representative thinkers of the time. The approach taken by the author is based on a premise that what constitutes emotions as phenomena in the world is of primary importance to questions concerning the... (shrink)

BackgroundThis paper represents a portion of the findings from one of the first research studies eliciting the lived experience of adults with an early diagnosis of Phenylketonuria living in Ireland. Ireland has one of the highest prevalence rates of PKU in Europe, however, little is known about the experience of Irish adults with PKU. Furthermore, Ireland is one of the first countries in the world to introduce neonatal screening followed by the introduction of long-term dietary therapy over 50 years ago. (...) This study presents the first comprehensive assessment of the lived experience of Irish adults with PKU on long term dietary therapy.MethodsNarrative data was collected from eleven self-selected participants, using semi-structured interviews. The interviews were divided into five sections focused on eliciting a holistic understanding of the lived experience of adults with PKU living in Ireland. Thematic analysis was guided by Colaizzi's Framework in conjunction with NVivo qualitative data analysis software.FindingsFindings from the original research encompassed a broad understanding of the lived experience of adults with PKU living in Ireland, including factors influencing dietary therapy and managing PHE blood levels. The themes being discussed within this article are those which appear to be least represented within current literature: living with PKU, including reproductive health, the importance of self-management and establishing routine, support networks in adulthood and concerns regarding aging with PKU.ConclusionIt was evident from the findings that a diagnosis of PKU can influence how adults with PKU may experience aging and their own mortality. These findings offer new insight into the vulnerability attached to the experience of aging with PKU and may be beneficial to advocacy groups and for future development of policy and practice. (shrink)

A biography of the theologian/scientist/philosopher who became famous for his archeological research and for his efforts to reconcile religion and science through a synthesis of evolutionary theory and Christian doctrine.

Qualitative inquiry is increasingly used to foster change in health policy and practice. Research ethics committees often misunderstand qualitative inquiry, assuming its design can be judged by criteria of quantitative science. Traditional health research uses scientific realist standards as a means-to-an-end, answering the question “So what?” to support the advancement of practice and policy. In contrast, qualitative inquiry often draws on constructivist paradigms, generating knowledge either as an end-in-itself or as a means to foster change. When reviewers inappropriately judge qualitative (...) inquiry, it restricts the ways health phenomena can be understood. Qualitative inquiry is necessary because it enables an understanding not possible within scientific explanation. When such research illuminates, it can also shed light onto the “So what?” In order to ensure an appraisal of qualitative inquiry congruent with its paradigmatic premises, we suggest the “Illumination Test,” met when findings foster rich understanding of phenomena, resulting in a reflective “aha!”. (shrink)

Ellen Meiksins Wood is a leading contemporary political theorist who has elaborated an innovative approach to the history of political thought, the social history of political theory .

The formation of the modern state, the rise of capitalism, the Renaissance and Reformation, the scientific revolution and the Age of Enlightenment have all been attributed to the “early modern” period. Nearly everything about its history remains controversial, but one thing is certain: it left a rich and provocative legacy of political ideas unmatched in Western history. The concepts of liberty, equality, property, human rights and revolution born in those turbulent centuries continue to shape, and to limit, political discourse today. (...) Assessing the work and background of figures such as Machiavelli, Luther, Calvin, Spinoza, the Levellers, Hobbes, Locke and Rousseau, Ellen Wood vividly explores the ideas of the canonical thinkers, not as philosophical abstractions but as passionately engaged responses to the social conflicts of their day. (shrink)

Context: Although ethics consultation is commonplace in United States (U.S.) hospitals, descriptive data about this health service are lacking. Objective: To describe the prevalence, practitioners, and processes of ethics consultation in U.S. hospitals. Design: A 56-item phone or questionnaire survey of the "best informant" within each hospital. Participants: Random sample of 600 U.S. general hospitals, stratified by bed size. Results: The response rate was 87.4%. Ethics consultation services (ECSs) were found in 81% of all general hospitals in the U.S., and (...) in 100% of hospitals with more than 400 beds. The median number of consults performed by ECSs in the year prior to survey was 3. Most individuals performing ethics consultation were physicians (34%), nurses (31%), social workers (11%), or chaplains (10%). Only 41% had formal supervised training in ethics consultation. Consultation practices varied widely both within and between ECSs. For example, 65% of ECSs always made recommendations, whereas 6% never did. These findings highlight a need to clarify standards for ethics consultation practices. (shrink)

To design effective strategies to improve ethics consultation (EC) practices, it is important to understand the views of ethics practitioners. Previous U.S. studies of ethics practitioners have overrepresented the views of academic bioethicists. To help inform EC improvement efforts, we surveyed a random stratified sample of U.S. hospitals, examining ethics practitioners’ opinions on EC in general, on their own EC service, on strategies to improve EC, and on ASBH practice standards. Respondents across all categories of hospitals had very positive perceptions (...) of their own ethics consultation service (ECS) and few concerns about quality. Our findings suggest that the ethics-related needs of small, rural, non-teaching hospitals may be very different from those of academic medical centers, and therefore, different approaches to addressing ethical issues might be warranted. (shrink)

Putting the ethical tools of philosophy to work, Ellen K. Feder seeks to clarify how we should understand "the problem" of intersex. Adults often report that medical interventions they underwent as children to "correct" atypical sex anatomies caused them physical and psychological harm. Proposing a philosophical framework for the treatment of children with intersex conditions—one that acknowledges the intertwined identities of parents, children, and their doctors—Feder presents a persuasive moral argument for collective responsibility to these children and their families.

Some health care organizations allow physicians to withhold cardiopulmonary resuscitation from a patient, despite patient or surrogate requests that it be provided, when they believe it will be more harmful than beneficial. Such cases usually involve patients with terminal diagnoses whose medical teams argue that aggressive treatments are medically inappropriate or likely to be harmful. Although there is state-to-state variability and a considerable judicial gray area about the conditions and mechanisms for refusals to perform CPR, medical teams typically follow a (...) set of clearly defined procedures for these decisions. The procedures are based on the principle of nonmaleficence and typically include consultation with hospital ethics committees, reflecting the guidelines of relevant professional associations. Ethical debates about when CPR can and should be limited tend to rely more on discussions of theory, principles, and case studies than systematic empirical study of the situations in which such limitations are applied. Sociologists of bioethics call for empirical study, arguing that what ethicists and health professionals believe they are doing when they draft policies or invoke principles does not always mirror what is happening on the ground. In this article, we begin the task of modeling the empirical analyses sociologists call for, focusing on a cohort at Massachusetts General Hospital. We inductively analyzed ethics committee notes and medical records of nineteen patients whose surrogates did not accept the decision to withhold CPR. (shrink)

There is strong theoretical support for a relationship between various characteristics of religiousness and attitudes towards business ethics. This paper examines three frequently- studied dimensions of religiousness (fundamentalism, conservatism, and intrinsic religiousness) and their ability to predict students' willingness to behave unethically. Because prior research indicated a possible relationship between the religious affiliation of an institution and its members' ethical orientation, we studied students at universities with three different types of religious affiliation: evangelical, Catholic, and none.Results of the study lend (...) support to a negative relationship between the above-mentioned dimensions of religiousness and willingness to behave unethically. In addition, students at the Evangelical university were far less willing to engage in unethical behavior than were students at either the Catholic or the unaffiliated institutions. (shrink)

ABSTRACTHow does practice change our behaviors such that they go from being awkward, unskilled actions to elegant, skilled performances? This is the question that I wish to explore in this paper. In the first section of the paper, I will defend the tight connection between practice and skill and then go on to make precise how we ought to construe the concept of practice. In the second section, I will suggest that practice contributes to skill by structuring and automatizing the (...) motor routines constitutive of skilled actions. I will cite how this fact about skilled action has misled many philosophers to conclude that skills are mindless or bodily. In the third section of the paper, I will challenge this common misconception about automaticity by appealing to empirical evidence of motor chunking. This evidence reveals that there are two opposing processes involved in the automaticity of skilled action: one process that is largely associative, which I will call “concatenation,” and a second which is a contro... (shrink)

The annual volume of ethics consultations (ECs) has been a topic of interest in the bioethics literature, in part because of its presumed relationship to quality. To better understand factors associated with EC volume, we used multiple linear regression to model the number of case consultations performed in the last year based on a national survey. We found that hospital bed size, academic affiliation, and urban/rural location were all associated with EC volume, but were not the primary drivers. Instead, these (...) variables affected EC volume through three other variables, all of which relate to ethics staffing: the percentage of case consultations performed by a single individual; whether the survey respondent’s main role at the hospital contained the word “ethics”; and especially, the number of full-time ethics program staff. We conclude that EC is an example of supply-sensitive care, and further research is needed to determine the optimal level of EC activity. (shrink)