Decisions to override a parental request to withhold or withdraw treatment in the neonatal intensive care unit are often made based on the harm standard, with death being cast as the ultimate harm. However, often the treatment itself is not without harm, and the suffering engendered is undergone by an infant who is neither able to understand it nor express its presence. We can draw upon anticipated future quality of life to justify the present suffering, but are in a quandary (...) when that future is not guaranteed or is likely to hold little but further suffering. I propose that conflicts over continuing treatment are based both on disagreements about the desirability of possible futures, and on differing perceptions of the infant’s current level of suffering. Those of us who witness the suffering of these tiny, mute infants all bear some responsibility to insure that their suffering is not without purpose. (shrink)

The controversy over the so-called Ashley Treatment (AT), a series of medical procedures that inhibited both growth and sexual development in the body of a profoundly intellectually impaired girl, usually centers either on Ashley’s rights, including a right to an intact, unaltered body, or on Ashley’s parents’ rights to make decisions for her. The claim made by her parents, that the procedure would improve their ability to care for her, is often dismissed as inappropriate or, at best, irrelevant. We argue, (...) however, that caregiving is a central issue in the controversy, as Ashley’s need for caregiving is a defining characteristic of her life. In this article, we analyze the ethics of the Ashley Treatment within the context of family caregiving. Through the physical and emotional work of caregiving, families participate in the formation and maintenance of personal identity, a process that Hilde Lindemann recently called “holding.” We argue that, in an intellectually disabled person such as Ashley, who depends on her family for every aspect of her care, the family’s contribution to identity is an essential source of personhood. We believe that the treatment can be justified if it is indeed an instance of appropriate family “holding” for Ashley. (shrink)

Modern medical technology has made it possible for babies to survive with conditions that would have ended their lives only half a century ago. But complex health care interventions and regimens are not enough. These children require support, caregiving, and constant vigilance from their families, especially their parents. Sometimes referred to as children with "special needs," their dependency and vulnerability may stem from genetic disorders, premature births, serious accidents, or illness. This includes conditions such as severe autism spectrum disorder, Down (...) syndrome, hypoxic ischemic encephalopathy, Trisomy 13, Trisomy 18, Fragile X Syndrome, spina bifida, and brain damage... (shrink)

Lisa Freitag and Joan Liaschenko’s thoughtful and important article goes directly to the under-examined heart of Ashley’s case, namely to what sustains her in a habitable and intelligible identity. Though quite sympathetic with their conclusion and line of argument, I try to trouble their proceedings a bit, largely by wondering how having a specific such identity, out of several that may be inprinciple available, matters to someone with Ashley’s cognitive scope. I do this not simply to be contrary, (...) but because their article also seems to me to raise issues in the ethics of bioethics—in particular, what I call the dilemma of ethical endeavor: How ought one publicly pursue deeply important and complex issues, the very raising of which may offend interlocutors who indeed have grounds for resentment. Making a habit of second guessing oneself may be part of the answer. (shrink)

There is remarkable variety in emotional life. Not all mental states referred to by the same word (e.g., “fear”) look alike, feel alike, or have the same neurophysiological signature. Variability has been observed within individuals over time, across individuals from the same culture, and of course across cultures. In this paper, I outline an approach to understanding the richness and diversity of emotional life. This model, called the conceptual act model, is not only well suited to explaining individual differences in (...) the frequency and quality of emotion, but it also suggests the counter-intuitive view that the variety in emotional life extends past the boundaries of events that are conventionally called “emotion” to other classes of psychological events that people call by different names, such as “cognitions”. As a result, the conceptual act model is a unifying account of the broad variety of mental states that constitute the human mind. (shrink)

Contemporary biomedical ethics and environmental ethics share a common ancestry in Aldo Leopold's and Van Rensselaer Potter's initial broad visions of a connected biosphere. Over the past five decades, the two fields have become strangers. Public health ethics, a new subfield of bioethics, emerged from the belly of contemporary biomedical ethics and has evolved over the past 25 years. It has moved from its traditional concern with the tension between individual autonomy and community health to a wider focus on social (...) justice and solidarity. Public health has a broad focus that includes individual, community, and environmental health. Public health ethics attends to these broad commitments reflected in the increasing concern with the connectedness of health of individuals to the health of populations, to the health of animals, to the health of the environment; it is well situated to reconnect all three “fields” of ethics to promote a healthier planet. (shrink)

In this accessible yet throught-provoking work, Lisa Tessman takes us through gripping examples of the impossible demands of morality -- some epic, and others quotidian -- whose central predicament is: How do we make decisions when morality demands we do something that we cannot?

This paper questions the prevailing historical understanding that scientific racism "retreated" in the 1950s when anthropology adopted the concepts and methods of population genetics and race was recognized to be a social construct and replaced by the concept of population. More accurately, a "populational" concept of race was substituted for a "typological one"-this is demonstrated by looking at the work of Theodosius Dobzhansky circa 1950. The potential for contemporary research in human population genetics to contribute to racism needs to be (...) considered with respect to the ability of the typological-population distinction to arbitrate boundaries between racist society and nonracist, even anti-racist, science. I point out some ethical limits of "population thinking" in doing so. (shrink)

For over 100 years, the field of contemporary public health has existed to improve the health of communities and populations. As public health practitioners conduct their work – be it focused on preventing transmission of infectious diseases, or prevention of injury, or prevention of and cures for chronic conditions – ethical dimensions arise. Borrowing heavily from the ethical tools developed for research ethics and bioethics, the nascent field of public health ethics soon began to feel the limits of the clinical (...) model and began creating different frameworks to guide its ethical challenges. Several public health ethics frameworks have been introduced since the late 1990s, ranging from extensions of principle-based models to human rights and social justice perspectives to those based on political philosophy. None has coalesced as the framework of choice in the discipline of public health. This paper examines several of the most-known frameworks of public health ethics for their common theoretical underpinnings and values, and suggests next steps toward the formulation of a single framework. (shrink)

This article examines the operation of “skilled feelings” in metaphors for the heart-mind (xin 心) as ruler of the body. It focuses on three Chinese philosophical texts in contexts outside of the “Confucian” texts that have dominated the emerging field of comparative virtue ethics—the Zhuangzi 莊子, Sunzi Bingfa 孫子兵法 (Sunzi’s Art of War), and Huangdi Neijing 黃帝內經 (The Yellow Emperor’s Classic of Internal Medicine)—and briefly contrasts the Chinese accounts to influential Greek metaphors of the mind as ruler of the body (...) and passions. (shrink)

Knowing Words will be welcomed by sinologists, classicists, and scholars of comparative philosophy and literature.

Although they produced vastly more turmoil, the uprisings in the Arab world shared many characteristics with other early 21st-century popular protests on both the left and the right, from Spain’s Indignados and Occupy Wall Street to the anti-elite votes for Brexit and Trump. The conviction that political elites and the states they rule, which were once responsible for welfare and development, now ignore and demean the interests and concerns of ordinary citizens takes many forms, but is virtually universal. The Arab (...) world was only one site of this discontent, but the story of the Arab Spring insurrections provides a cautionary illustration of the perils in abdication of political authority and accountability and provokes questions about how we understand historical moments when passions outstrip interests. (shrink)

In this paper we reconsider the issue of free choice and the role of the wh-morphology employed in it. We show that the property of being an interrogative wh-word alone is not sufficient for free choice, and that semantic and sometimes even morphological definiteness is a pre-requisite for some free choice items (FCIs) in certain languages, e.g. in Greek and Mandarin Chinese. We propose a theory that explains the polarity behaviour of FCIs cross-linguistically, and allows indefinite (Giannakidou 2001) as well (...) as definite-like FCIs. The difference is manifested as a lexical distinction in English between any (indefinite) and wh-ever (definite); in Greek it appears as a choice between a FCI nominal modifier (taking an NP argument), which illustrates the indefinite option, and a FC free relative illustrating the definite one. We provide a compositional analysis of Greek FCIs in both incarnations, and derive in a parallel manner the Chinese FCIs. Here the definite versus indefinite alternation is manifested in the presence or absence of dōu, which we take to express the maximality operator. It is thus shown that what we see in the morphology of FCIs in Greek is reflected in syntax in Chinese. Our analysis has important consequences for the class of so-called wh-indeterminates. In the context of current proposals, free choiceness is taken to come routinely from interrogative semantics, and wh-indeterminates are treated as question words which can freely become FCIs (Kratzer and Shimoyama 2002). Our results from Mandarin and Greek emphasize that wh-indeterminates do not form a uniform class in this respect, and that interrogative semantics alone cannot predict either sensitivity of free choice to definiteness, or the polarity behaviour of FCIs. (shrink)

Despite increased interest in “intuition” within cognitive psychology, the conceptual framework of this notion remains problematic. This paper argues that conceptual shortcomings stem from a tendency to ignore the philosophical heritage of intuition or to dismiss the relevance of this heritage to contemporary theory. The paper outlines major understandings of intuition within psychology and prominent philosophical traditions, highlighting important points of inconsistency in these and examining consequences of the inconsistency. It also considers psychological conceptions of intuition that more readily overlap (...) with philosophical accounts and offers some suggestions toward a more philosophically informed notion of intuition relevant to contemporary psychological theory. (shrink)

This paper is an attempt to elaborate two concerns: those of maternal ethics, and notions of making things public. I attempt to bring these two concerns together and think them alongside one another, in hopefully productive ways. I want, in other words, to think about the ethics of what mothers ‘make public’, whether this is understood in its most rudimentary form, of enabling a child to express something, to make public an affective state, for instance, even if it is only (...) the mother who is there to witness or receive it, through to more overt and material forms of ‘publication’ glimpsed when mothers parent in spaces we call ‘public’. This paper focuses on what happens to us all when we encounter ‘mothering’ – not in the enclosed, private, secluded spaces where we imagine mothering to take place, but in what Marc Augé has termed the ‘non-places of supermodernity’, where much of the day-to-day material practices of mothering in Western late-modern urban contexts actually occurs. As is often the case, it is when experience is dislodged from the contexts in which we expect to find it that its contours are shown up in relief, and we are called on to re-configure our understandings of experiences in ways that also shift our understandings of the contexts in which they occur. In this sense, mothering, that I am claiming ‘makes things public’, as well as occurring frequently and importantly ‘in public’, not only shows up something we may overlook about the maternal, but also deforms and reforms our understandings of ‘the public’ itself. (shrink)

This paper presents an analysis of emotional and affectively toned discourse in biomedical engineering researchers’ accounts of their problem solving practices. Drawing from our interviews with scientists in two laboratories, we examine three classes of expression: explicit, figurative and metaphorical, and attributions of emotion to objects and artifacts important to laboratory practice. We consider the overall function of expressions in the particular problem solving contexts described. We argue that affective processes are engaged in problem solving, not as simply tacked onto (...) reasoning but as integral to it. The examples we present illustrate the close relation of emotion to problem solving and experimentation; they also implicate social and cultural dimensions of emotion expression. The analysis underscores a need to consider emotional expression to be intimately and importantly tied to the cognitive achievements and social negotiations of laboratory practices. (shrink)

Current controversy over whether the Office of Management and Budget system of racial and ethnic classification should be used in pharmacogenetics research as suggested by the U.S. Federal Drug Administration has been couched in terms of realist-social constructionist debates on race. The assumptions both parties to these debates share instead need to be relinquished—specifically, dichotomies between the social and scientific and what is descriptive and evaluative/normative. This paper defends a pragmatic approach to the question of the appropriateness of the OMB (...) group categories in pharmacogenetics research, an approach that is local and context-specific rather than global, incorporates practical and ethical as well as theoretical dimensions, and recognizes intersections of the social and the biological in the constitution of group categories. (shrink)

In this Article I argue that the emerging public/private nexus of surveillance involves the augmentation of state power and calls for new models of constitutional constraint. The key phenomenon is the role played by communications intermediaries in collecting the information that the state subsequently accesses. These intermediaries are not just powerful companies engaged in collecting and analyzing the information of users and the information they hold are not just business records. The key feature of these companies is that, through their (...) information practices and architecture, they mediate other relationships. I argue that this mediating function, and its underlying technological form, interacts with legal and social norms in ways that can lead to the erosion of constraints on state power. This Article maps two stories of erosion, rooted in two kinds of community displacement. The first involves the displacement of community participation in law enforcement and the emergence of “technological tattletales” where intermediaries cooperate with the state. Unlike citizen cooperation, this practice augments state power and undermines more traditional informal modes of constraint on state power. The second involves the displacement of national legal and political community. Communications intermediaries are often large multinational companies that operate in multiple jurisdictions and move their data to various datacenters across the world even as the individual data subject remains in one geographical location. Laws that treat nonresident aliens differently from residents and citizens can create “constitutional black holes” where the communications data of an individual is not protected by any constitutional constraints. (shrink)

A Future of the History of Science Is in the Institution. In this article, I warn against a tendency seen in the history of science towards very particular and isolating microhistories. The call for contextualization should be more than mere lip service and taken seriously. I suggest that a stronger focus on the history of institutions could be one particularly productive way to contextualize knowledge. There are at least five benefits that an analysis of institutions might bring for the history (...) of science: The history of scientific institutions offers the potential for (1) entangled histories that (2) include longer time periods and pay not only attention to (3) the dissemination of knowledge but also to (4) the field of law and the mechanisms of vocational bureaucracy. In this way, (5) questions of power and politics come into view. (shrink)

This paper illustrates a role that bioethics should play in developing and criticizing protocols for breast cancer genetic screening. It demonstrates how a critical bioethics, using approaches and reflecting concerns of contemporary philosophy of science and science studies, may critically interrogate the normative and conceptual schemes within which ethical considerations about such screening protocols are framed. By exploring various factors that influence the development of such protocols, including politics, cultural norms, and conceptions of disease, this paper and the critical bioethics' (...) approach it endorses illuminate and critically assess some of the competing worldviews informing protocol development. One of the frequently neglected worldviews in traditional bioethics' treatment of protocols concerning breast care is constituted by women's own views of their breasts and breast cancer, both within the technologically-oriented social practice of American medicine and in light of the social construction of their breasted experience in American society. This paper attempts to redress and critically assess this neglect on the part of traditional bioethics. Finally, in contrast to traditional bioethics, critical bioethics critically interrogates its own normative and conceptual commitments. In this final capacity, a critical bioethics' approach makes a valuable contribution to the evolution of bioethics. (shrink)

The role of a journal like HPLS during the novel coronavirus pandemic should serve as a means for scholars in different fields and professions to consider historically and critically what is happening as it unfolds. Surely it cannot tackle all the possible issues related to the pandemic, in particular to the COVID-19 pandemic, but it does have a responsibility to foster the best possible dialogue about the various issues related to the history and philosophy of the life sciences, and thus (...) to solicit contributions from potential authors working in different parts of the world and belonging to different cultural traditions. Only a real plurality of perspectives should allow for a better, large-scale comprehension of what the COVID-19 pandemic is. (shrink)

The possibility of genetic enhancement to increase the likelihood of success in sport and life’s prospects raises questions for accounts of sport and theories of justice. These questions obviously include the fairness of such enhancement and its relationship to the goals of sport and demands of justice. Of equal interest, however, is the effect on our understanding of individual effort, merit, and desert of either discovering genetic contributions to components of such effort or recognizing the influence of social factors on (...) the development and exercise of individual effort. This paper analyzes arguments about genetic enhancement with the goal of raising questions about how sport and justice regard unchosen, undeserved inequalities and what is assumed to be their opposite—namely, the exercise and results of individual effort. It is suggested that contemplating enhancement of natural assets previously outside human control may reinforce recognition of responsibility to intervene with regard to social advantages so as to support individual effort and improve individuals’ life prospects. (shrink)

Nearly 90 % of allegations of biomedical research misconduct in the United States are dismissed by responsible institutions without any faculty assessment or auditable record. Recently, members of the U.S. Congress have complained that the penalties for those against whom findings of research misconduct are made are too light and that too few grant funds associated with research misconduct have been recovered for use by other researchers and taxpayers. Here we discuss the laws that empower federal agencies that can oversee (...) investigations of biomedical research misconduct: the Office of Research Integrity and the Office of the Inspector General, both located within the Department of Health and Human Services. Research misconduct investigations pertaining to U.S. physical sciences funded through the National Science Foundation are overseen by the NSF’s OIG. While OIGs may provide some improvement over the ORI in the handling of research misconduct, we have found that a much more serious flaw exists which undermines an ability to conduct performance audits of the effectiveness by which allegations of research misconduct are handled in the United States. Specifically, sufficient data do not need to be retained by U.S. research institutions funded by HHS or NSF to allow effective audit of why allegations of research misconduct are dismissed before being seen by faculty inquiry or investigative committees. U.S. federal Generally Accepted Government Auditing Standards, if applied to the research misconduct oversight process, would allow a determination of whether the handling of allegations of biomedical research misconduct actually functions adequately, and if not, how it might be improved. In particular, we propose that independent, external peer review under GAGAS audit standards should be instituted without delay in assessing the performance of ORI, or any other similarly tasked federal agency, in handling allegations of research misconduct. (shrink)

Reviews the role of intuition or an analogous concept within several divergent philosophical systems and argues that the salient feature common to various accounts of intuition is its non-inferential status. As such, it is argued to be highly relevant to contemporary theory. The paper offers several examples of points of compatibility with contemporary theory, including perception of social affordances, the apprehension linguistic rules and the construction of social norms. In claiming specific ways in which the concept of intuition is relevant (...) to contemporary theoretical psychology, the paper moves toward developing a more comprehensive and historically informed framework for intuition than is currently offered. It also underscores the historical underpinnings of contemporary debates. 2012 APA, all rights reserved). (shrink)

Virtually nonexistent in traditional American Indian communities, today American Indian women and children experience family violence at rates similar to those of the dominant culture. This article explores violence within American Indian communities as an expression of internalized oppression and as an extension of Euro-American violence against American Indian nations.

Although the category “race” fails as a postulated natural kind, racial, ethnic, national, linguistic, religious, and other group designations might nonetheless be considered projectible insofar as they support inductive inferences in biomedicine. This article investigates what it might mean for group concepts in population genetics and genomics to be projectible and whether the projectibility of such predicates licenses the representation of their corresponding classes as natural kinds according to currently prevailing projectibility-based accounts of natural kinds. The article draws on a (...) case study from cancer genetics, specifically, breast cancer risk in Ashkenazi Jewish women. (shrink)

Recent literature has suggested that generics can harbor and propagate worrying ideologies in a manner which is often not appreciated by speakers. In this article, I argue that the use of generics to convey information about mental illness is unhelpful, whether the knowledge structure conveyed by the generic is 'accurate' or not. Inaccurate generics contribute to insidious forms of social stereotyping and stigma by encouraging us to simplistically generalize characteristics found in very few category members to other members of that (...) kind.Yet, even where the knowledge structure underlying the generic is accurate, generics remain an unhelpful way of talking about mental illness. This is because... (shrink)

Over the past decade, Convergence Research has increasingly gained prominence as a research, development, and innovation (RDI) strategy to address grand societal challenges. However, a dearth of research-based evidence is available to aid researchers, research teams, and institutions with navigating the complexities attendant to the specifics of Convergence Research. This paper presents a multilevel research agenda that accounts for an integral understanding of Convergence Research as a complex adaptive system. Furthermore, by developing a framework that accounts for ancillary, yet essential, (...) systems associated with Convergence Research, we enrich the agenda with a literature-steeped discussion that considers how systems-based practices of collaboration, inquiry, and context interact with the processes and products of Convergence Research. Finally, we synthesize and apply insights from the reviewed literature by providing paths for empirical exploration emphasizing systems-based practices. In so doing, we delineate an extended boundary for a research stream that both clarifies and enlarges our understanding of Convergence Research as a ‘system-of-systems’. (shrink)

For the first time, the revised Common Rule specifies that public health surveillance activities are not research. This article reviews the historical development of the public health surveillance exclusion and implications for other foundational public health practices.

We describe our efforts to address theoretical opportunities and methodological challenges that arose in the context of our ethnographic investigation of research labs in four different fields of bioengineering science. The multiyear study compared the common and specific features of four sites of interdisciplinary practice and aimed to analyze personal and collective goals, problem formulations, methods, technologies, and social organization within each lab. In the second phase of the study we sought to inform curriculum development for biomedical engineering from the (...) ethnographic study, with the broader goal of positioning students to engage in the kind of thinking scientists actually do. Evaluating thinking in action posed considerable challenges, and required us to develop an approach to assessing the extent to which students enrolled in the new course were “thinking like a biomedical engineer.” Our principal point of emphasis for this chapter is that honest confrontation of the challenges of ethnographic study of science practice must lead to caution, yet that ethnographic study of science enables innovative adaptations of methods and can yield vital insights into psychological dimensions of science, including interdisciplinary science. (shrink)

The binary categories of harm and benefit have often shaped how historians frame discussions of insects. Scientists also leverage the binary framing of insects as tools and targets to carry out their work, especially in the development of biological technologies for pest control. This essay emphasizes how binaries function in scientific practice. Two case studies spanning from the twentieth century to the recent past illustrate the shift away from chemicals in pest management and, in doing so, show the instability of (...) binary categories over the longue durée. Noticing “ambivalent insects” affords a way to widen narrative options and identify new opportunities for investigating insect histories. (shrink)