Invertebrate genetic models with their tractable neuromuscular systems are effective vehicles for the study of human nerve and muscle disorders. This is exemplified by insights made into spinal muscular atrophy (SMA) using the fruit fly Drosophila melanogaster and the nematode worm Caenorhabditis elegans. For speed and economy, these invertebrates offer convenient, whole‐organism platforms for genetic screening as well as RNA interference (RNAi) and chemical library screens, permitting the rapid testing of hypotheses related to disease mechanisms and the exploration of new (...) therapeutic routes and drug candidates. Here, we discuss recent developments encompassing synaptic physiology, RNA processing, and screening of compound and genome‐scale RNAi libraries, showcasing the importance of invertebrate SMA models.Editor's suggested further reading in BioEssays: SMN and Gemins: ‘We are family’... or are we? Abstract. (shrink)

Since the Harvard Committees bold and highly successful attempt to redefine death in 1968 (Harvard Ad Hoc committee, 1968), multiple controversies have arisen. Stimulated by several factors, including the inherent conceptual weakness of the Harvard Committees proposal, accumulated clinical experience, and the incessant push to expand the pool of potential organ donors, the lively debate about the definition of death has, for the most part, been confined to a relatively small group of academics who have created a large body of (...) literature of which this issue of the Journal of Medicine and Philosophy is an example. Law and public policy, however, have remained essentially unaffected. This paper will briefly review the multiple controversies about defining death in an attempt to explain why they have and will remain unresolved in the academic community and have even less chance of being understood and resolved by politicians, legislators, and the general public. Considering this, we will end by suggesting the probable course of public policy and clinical practice in the decades ahead. (shrink)

One way of increasing the supply of vital organs without violating the dead donor rule is to declare death on cardiopulmonary criteria after withdrawing life support. The question then is how quickly death may be declared.

In lieu of an abstract, here is a brief excerpt of the content:IntroductionStuart J. Youngner (bio), Laura A. Siminoff (bio), and Renie Schapiro (bio)This issue of the Kennedy Institute of Ethics Journal (KIEJ) centers on a piece of empirical research. The motivation behind the study of Laura Siminoff, Christopher Burant, and Stuart Youngner (2004) was to find out more about what the general public understands and believes about when a person is dead. More specifically, the study tried to determine (...) how members of the public define death, especially their acceptance and interpretation of the medical concept of "brain death," and their attitudes toward the so-called "dead donor rule," an informal but powerful social and legal norm insisting that the taking of organs for transplantation not cause the death of the source of those organs.As the demand for organs increases and the waiting list grows, the United States has explored multiple ways to expand the pool of potential donors. One approach has been to gerrymander (coherently or not) the line between life and death to shift patients who are extremely compromised but traditionally considered to be in the living category into the dead category. In this way, the dead donor rule remains technically intact. This reasoning is explicit in the report of the Harvard Medical School Ad Hoc Committee (1968) that "introduced" "brain death" to the American culture. Since then, other efforts to redraw the line have been proposed and rejected.One alternative to gerrymandering is to consider under what conditions, if any, it is morally acceptable to violate the dead donor rule. Some would argue that this alternative is the more "honest" approach. Rather than sidestepping moral problems by calling people dead, it brings the moral problems to the surface where the necessity of sticking to the rule can be considered on its own merits. However, when the Journal of the American Medical Association printed a position paper that proposed making anencepahlic newborns an exception to the dead donor rule, along with arguments about why this was acceptable, the outcry was so great that the proposal was retracted (AMA 1995).Clearly, our society has identified organ transplantation as a priority, although two papers in this volume (those by Courtney Campbell and by Megan Crowley-Matoka and Robert Arnold) take issue with that prioritization. The fact that the donor pool has remained relatively stable (and inadequate) despite massive efforts [End Page 211] to increase it speaks, at least in part, to the cultural and legal resistance to "new" ways to procure more organs. Voluntarism seems to have peaked. Financial incentives clash with the heavily endorsed notion of the "gift of life" and seem to many to violate the dignity of the human body. Presumed consent or eminent domain, in which the community has a greater claim to a person's organs than that person or his/her family, go against the grain of American individual freedom and the ethos of patient autonomy.Abandoning the dead donor rule generally is regarded as an even tougher sell to the American public and its legislators. The study by Siminoff and colleagues attempts, among other things, to gauge just how tough this sell would be. What the data actually demonstrate is a matter of interpretation, and this issue of the KIEJ is devoted to some of those interpretations. The authors, with the exception of Daniel Hausman, came together for a meeting in Cleveland, Ohio, during which the study's methods and data were presented with time for questions, clarifications, and general discussion. The authors then worked with the editors to generate the papers printed in this volume.The issue begins with a presentation of the study conducted by Siminoff and colleagues. The same paper also appears in the journal Social Science and Medicine, where it includes the conclusions of the authors (Siminoff, Burant, and Youngner 2004). In the current volume, we present only the methodology of and data from the study, allowing a number of distinguished commentators to offer their own conclusions and reflections.The first response comes from Tracy Schmidt, Executive Director of Intermountain Donor Services, one of our nation's organ procurement organizations (OPOs). For years, organ procurement professionals have reported anecdotal stories about families who wished to donate organs of... (shrink)

Working within the tradition of continental philosophy, this article argues in favour of a phenomenological understanding of language as a crucial component of bioethical inquiry. The authors challenge the ‘commonsense’ view of language, in which thinking appears as prior to speaking, and speech the straightforward vehicle of pre-existing thoughts. Drawing on Maurice Merleau-Ponty's (1908–1961) phenomenology of language, the authors claim that thinking takes place in and through the spoken word, in and through embodied language. This view resituates bioethics as a (...) matter of bodies that speak. It also refigures the meaning of ethical self-reflexion, and in so doing offers an alternative view on reflexivity and critique. Referring to the Kantian critical tradition and its reception by Hannah Arendt and Michel Foucault, we advance a position we call ‘critical ethical reflexivity’. We contend that Merleau-Ponty's phenomenology of language offers valuable insight into ethical reflexivity and subject formation. Moreover, his understanding of language may foster new qualitative empirical research in bioethics, lead to more nuanced methods for interpreting personal narratives, and promote critical self-reflexion as necessary for bioethical inquiry. (shrink)

This book is the first comprehensive report and analysis of the Dutch euthanasia experience over the last three decades. In contrast to most books about euthanasia, which are written by authors from countries where the practice is illegal and therefore practised only secretly, this book analyzes empirical data and real-life clinical behavior. Its essays were written by the leading Dutch scholars and clinicians who shaped euthanasia policy and who have studied, evaluated and helped regulate it. Some of them have themselves (...) practised euthanasia. The book will contribute to the world literature on physician-assisted death by providing a comprehensive examination of how euthanasia has been practised and how it has evolved in one specific national and cultural context. It will greatly advance the understanding of euthanasia among both advocates and opponents of the practice. (shrink)

This paper explores a novel philosophy of ethical care in the face of burgeoning biomedical technologies. I respond to a serious challenge facing traditional bioethics with its roots in analytic philosophy. The hallmarks of these traditional approaches are reason and autonomy, founded on a belief in the liberal humanist subject. In recent years, however, there have been mounting challenges to this view of human subjectivity, emerging from poststructuralist critiques, such as Michel Foucault's, but increasingly also as a result of advances (...) in biotechnology itself. In the face of these developments, I argue that the theoretical relevance and practical application of mainstream bioethics is increasingly under strain. Traditionalists will undoubtedly resist. Together, professional philosopher-bioethicists, public health policymakers, and the global commercial healthcare industry tend to respond conservatively by shoring up the liberal humanist subject as the foundation for medical ethics and consumer decision-making, appealing to the familiar tropes of reason, autonomy, and freedom. (shrink)

The transplantation and procurement of human organs has become almost routine in American society. Yet, organ transplantation raises difficult ethical and psychosocial issues in the context of “controlled” death, including the blurring of boundaries between life and death, self and other, healing and harming, and killing and letting die. These issues are explored in the context of the actual experiences of organ donors and recipients, brain death, the introduction of non‐heartbeating donor protocols, and the increasing reliance on living donors. The (...) author draws on a thematic analysis of the way that organ transplantation is presented in the media, films, and science fiction and on his clinical experience as a psychiatrist working with transplant patients, their families, and the nurses and physicians who care for them. (shrink)

Each is for the other the middle term, through which each mediates itself with itself and unites with itself; and each is for itself, and for the other, an immediate being on its own account, which at the same time is such only through this mediation. They recognize themselves as mutually recognizing one another. Scholars seeking an account of recognition will be familiar with the seminal section on lordship and bondage in Hegel’s Phenomenology of Spirit. In these passages we learn (...) that the dialectic of mutual recognition is the key to actualized self-consciousness, that moment in which the “I” transcends its immanence in the life process to become a self-reflective subject, actively superseding the.. (shrink)

ABSTRACT Written in late March 2020 in the early days of the U.S. coronavirus outbreak, this essay represents a contingent reflection on the American pandemic response, mourning in anticipation of what would soon surely unfold. I argue that the State's long-standing sacrificial economies have in this moment culminated in a suicidal State. The term is Foucault's, appearing in a controversial lecture on biopolitics, Nazism, and “biological racism.” Despite Foucault's problematic treatment of racism, I suggest that some aspects of this discourse (...) might nevertheless be apropos in our context. The U.S. pandemic response is racism's suicidal State legacy writ large: an extension and retooling of historically racist infrastructures deployed in racialized domains, but in this moment also across biosocial inequities and vulnerabilities marked by differential fungibilities other than race. (shrink)

This article recounts the evolution of a global debate on the development of a common international code of journalistic ethics that would apply to East and West, Developed and Developing Countries. It sees as unlikely universal principles and prescriptions for professionals can be adopted across the divergent sociopolitical philosophies involved. Even common ground for constructive discussion on the topic is limited. Scholars, journalists, and educators are encouraged to instill an appreciation for the differences and to help create an understanding of (...) the special problems involved in media relationships among countries. (shrink)

◆ Writing is per se already violence: the rupture there is in each fragment, the break, the splitting, the tearing of the shred—acute singularity, steely point. And yet this combat is, for patience, debate. The name wears away [s'use], the fragment fragments, erodes.There is much talk today but little speech, or rather, little speech that could be received and responded to absent the vows of the unavowable community of its speakers. There is combat but debate is foreclosed by the absence (...) of asignifying absence. To avow that a community is unavowable—when the name wears away—is not to say that it has been disavowed, subjected, though in many cases this is so, for often the name names sovereignly.... (shrink)

What might become of anthropology if it were to suspend its sometime claims to be a social science? What if it were to turn instead to exploring its affinities with art and literature as a mode of engaged creative practice carried forward in a world heterogeneously composed of humans and other than humans? Stuart McLean claims that anthropology stands to learn most from art and literature not as "evidence" to support explanations based on an appeal to social context or (...) history but as modes of engagement with the materiality of expressive media--including language--that always retain the capacity to disrupt or exceed the human projects enacted through them. At once comparative in scope and ethnographically informed, Fictionalizing Anthropology draws on an eclectic range of sources, including ancient Mesopotamian myth, Norse saga literature, Hesiod, Lucretius, Joyce, Artaud, and Lispector, as well as film, multimedia, and performance art, along with the concept of "fabulation" (the making of fictions capable of intervening in and transforming reality) developed in the writings of Bergson and Deleuze. Sharing with proponents of anthropology's recent "ontological turn," McLean insists that experiments with language and form are a performative means of exploring alternative possibilities of collective existence, new ways of being human and other than human, and that such experiments must therefore be indispensable to anthropology's engagement with the contemporary world. (shrink)