Although deeply committed to the model of nondirective counseling, most genetic counselors enter the profession with certain assumptions about health and disability—for example, that it is preferable to be a hearing person than a deaf person. Thus, most genetic counselors are deeply troubled when parents with certain disabilities ask for assistance in having a child who shares their disability. This ethical challenge benefits little from viewing it as a conflict between beneficence and autonomy. The challenge is better recast as a (...) conflict between parental autonomy and the child's future autonomy. (shrink)

In November 2018, the practice of health care ethics consultation crossed a major threshold when 138 candidates took the inaugural Healthcare Ethics Consultant Certification Examination. This accomplishment, long in the making, has had and continues to have both advocates and critics. The Healthcare Ethics Consultant Certification Commission, a functionally autonomous body created and funded by the American Society for Bioethics and Humanities, was charged with overseeing creation of the certification process, developing the exam, and formulating certification standards and policies to (...) assess candidates’ qualifications. In this essay, as members of the commission, we describe the process of developing, administering, and scoring the certification examination as well as the historical context and the outlook for certification. By detailing the decisions and actions of the commission, we aim to provide a transparent account of the commission's efforts to develop a psychometrically sound, reliable, and secure examination through a deliberative, fair, and data‐driven process. (shrink)

There is a flood of papers being published on new ways to diagnose Alzheimer disease before it is symptomatic, involving a combination of invasive tests , and pen and paper tests. This changes the landscape with respect to genetic tests for risk of AD, making rational suicide a much more feasible option. Before the availability of these presymptomatic tests, even someone with a high risk of developing AD could not know if and when the disease was approaching. One could lose (...) years of good life by committing suicide too soon, or risk waiting until it was too late and dementia had already sapped one of the ability to form and carry out a plan. One can now put together what one knows about one's risk, with continuing surveillance via these clinical tests, and have a good strategy for planning one's suicide before one becomes demented. This has implications for how these genetic and clinical tests are marketed and deployed, and the language one uses to speak about them. The phrase ‘there is nothing one can do’ is insulting and disrespectful of the planned suicide option, as is the language of the Risk Evaluation and Education for Alzheimer's Disease studies and others that conclude that it is ‘safe’ to tell subjects their risk status for AD. Further, the argument put forward by some researchers that presymptomatic testing should remain within research protocols, and the results not shared with subjects until such time as treatments become available, disrespects the autonomy of people at high risk who consider suicide an option. (shrink)

Obtaining community consent before conducting genetic research seems to be a way of ensuring that a whole community is not harmed against its wishes—that all Jews, or all African Americans, or all Hutterites are not forced to learn things about themselves they would rather not know, or are not forced into identities they would rather not have. Unfortunately, there are insurmountable problems both in identifying the right representatives of the community and in obtaining their consent.

When cases are described thinly to protect patient confidentiality, they teach us only what we put into them. Thick description, like myth, allows a fuller moral response.

As we aggressively pursue research to cure and prevent Alzheimer’s disease, we encounter important ethical challenges. None of these challenges, if handled thoughtfully, would pose insurmountable barriers to research. But if they are ignored, they could slow the research process, alienate potential study subjects and do damage to research recruits and others. These challenges are the necessity of very large cohorts of research subjects, recruited for lengthy studies, probably ending only in the subjects’ death; the creation of cohorts of ’study (...) ready' volunteers, many of whom will be competent to consent at the beginning of the process, but move into cognitive impairment later; reliance on adaptive trial design, creating challenges for informed consent, equipoise and justice; the use of biomarkers and predictive tests that describe risk rather than certainty, and that can threaten participants’ welfare if the information is obtained by insurance companies or long-term care providers; the use of study partners that creates unique risks of harm to the relationship of subject and study partner. We need greater attention, at all levels, to these complex ethical issues. Work on these issues should be included in research plans, from the federal to the local, and should be supported through NIH in the same way that it supported work on the ethical, legal and social implications of genetic research. (shrink)

Henceforth "to transform" should mean "to change the sense of sense."The field of the entity … is structured according to the diverse—genetic and structural—possibilities of the trace.The first article in the first issue of Philosophy and Rhetoric is "The Rhetorical Situation," Lloyd Bitzer's critical exegesis on "the nature of those contexts in which speakers or writers create rhetorical discourse". Bitzer contends that the rhetor produces "the rhetorical text" when a "real" or "natural" —"objective and publicly observable" —situation "calls the discourse (...) into existence". That was 1968. Five volumes later, as you know, Richard E. Vatz flips the causal relation, maintaining instead that... (shrink)

In neocolonial contexts of globalization, the epistemological terrain of radical diversity poses significant ethical challenges to transnational feminisms. In view of historical associations between knowledge and discourses of love which were conditioned by imperialist brands of humanism and benevolence under colonialism, this paper argues for a deconstructionist approach to conceptualizing love in relation to knowledge and for an ethics that severs the association with benevolence, instead making alterity the basis for its account.

The ancient practice of metzitzah b'peh, direct oral suction, is still practiced by ultra-Orthodox Jews as part of the religious rite of male newborn circumcision. Between 2000 and 2011, 11 children have died in New York and New Jersey, following infection by herpes simplex virus, presumably from infected practitioners. The City responded by requiring signed parental consent before oral suction, with parents being warned of the dangers of the practice. This essay argues that informed consent is not an appropriate response (...) to this problem. An outright ban would a better response to a practice that is dangerous to children, but might prove unconstitutional under New York State law. (shrink)

Americans who are afraid of living for many years with Alzheimer's might seek a way to end their lives early, when their dementia has just entered the moderate phase. There is no legal process for doing so. In this paper I argue that advance directives, in particular, are not a legal solution for those who prefer to die rather than suffer years of dementia. The problem is that an advance directive only works to hasten death when there is a life-threatening (...) illness for which one can refuse treatment; more often than not, Alzheimer's kills the self long before it kills the body. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Addressing Alterity:Rhetoric, Hermeneutics, and the Nonappropriative RelationDiane DavisTeaching is not reducible to maieutics; it comes from the exterior and brings me more than I contain.—Emmanuel Levinas, Totality and InfinityThere is always the matter of a surplus that comes from an elsewhere and that can no more be assimilated by me, than it can domesticate itself in me. A teaching that may part ways with Heidegger's motif of our being (...) able to learn only what we already understand—when does learning take place? what do we already understand?—the Conversation belongs, as ethical relation, to the effort of thinking the infinite, the transcendent, the Stranger. None of this amounts to thinking an object.—Avital Ronell, DictationsFrom Rhetorical Power to Reception Histories Steven Mailloux has brilliantly performed and explicated a "rhetorical hermeneutics" that demonstrates the "practical inseparability of interpretation and language use and thus of the discourses that theorize those practices, hermeneutics and rhetoric" (1998, 3). Many rhetoricians have challenged the specifics of Mailloux's various arguments and have more generally objected that "rhetorical hermeneutics" leans too far toward the hermeneutical, reducing rhetoric to an analytic or critical art and giving its productive (political) function the squeeze.1 Yet within these lively debates, very few have challenged his basic premise that rhetoric and hermeneutics are inextricably intertwined: the question has not been whether they are indissociable but which side of the production-reception coin rhetorical studies ought to emphasize.2 Michael Leff, for example, flipped Mailloux's adjective-noun relation to spotlight production, promoting a "hermeneutical rhetoric" that focuses more on political than literary texts; nonetheless, he agrees that "all interpretive work involves participation in a rhetorical exchange, and that every rhetorical exchange involves some interpretive work" (1997, 197-98). [End Page 191] Rosa Eberly goes further in Citizen Critics, offering a hermeneutical rhetoric that is less interested in "already-written discourses" than in spotlighting "rhetoric's power as an art productive of discourses and subjectivities for the present and the future" (2000, 34). Yet Eberly, too, affirms Mailloux's basic premise, which was nudged in the direction of conflation in the introduction to the 1997 collection Rhetoric and Hermeneutics in Our Time, in which the editors, Walter Jost and Michael Hyde note in passing that their title can "be understood as virtually tautological."And there is of course no doubt that rhetoric has a hermeneutic dimension; or, more carefully, that rhetoric constitutes the hermeneutic dimension. If "hermeneutics" indicates "the art of understanding," as Friedrich Schleirmacher wanted, then interpretation clearly depends upon production.3 "Rhetoric not only has its place within the sphere of objects surveyed by hermeneutics," as Werner Hamacher puts it, "but also constitutes an integral component of every hermeneutic operation. Every step in an interpretation corresponds to a rhetorical—or grammatical—figure" (1996, 70). Put more bluntly: intelligibility, including self-intelligibility, is a tropological product; cognition itself is a trope that can in no way be secured. Hermeneutics—as it's being used here—is completely dependent on, even absorbed by, rhetoric.4 I have no problem with this. Nor with Mailloux's suggestion that the reverse is also true:In some ways rhetoric and interpretation are practical forms of the same extended human activity: Rhetoric is based on interpretation; interpretation is communicated through rhetoric. Furthermore, as a reflection on practice, hermeneutics and rhetorical theory are mutually defining fields: hermeneutics is the rhetoric of establishing meaning, and rhetoric the hermeneutics of problematic linguistic situations.(Mailloux 1998, 4)I don't disagree: As the production and appropriation of meaning, rhetoric and hermeneutics are an indissociable team; together, they complete understanding's circle. I take this as a given.However, I want to suggest that there is also a non-hermeneutical dimension of rhetoric that has nothing to do with meaning-making, with offering up significations to comprehension. This dimension is reducible neither to figuration nor to what typically goes by the name persuasion; it is devoted to a certain reception, but not to the appropriation of meaning. Preceding and exceeding all hermeneutic interpretation, it deals not in signified meaning but in the address itself, in the exposure to the other; it deals not... (shrink)

It is often pointed out that one cannot be “a little bit pregnant,” but pregnancy’s borders are no longer so crisp. At Children’s Hospital of Philadelphia, scientists have created an artificial womb in which “extremely premature” lambs were nurtured for four weeks, enough to make them ready to meet the world. The goal is to advance this technology until it is available for very premature human infants. At present, we put preemies into neonatal intensive care units, which are extremely stressful (...) for the babies and their families, and the things we do to try to support them often cause serious damage. If successful, the artificial womb could be a terrific technology. The implications are remarkable. Would humans become somewhat like marsupials? Now, one is either born or not. Would this technology create a new, intermediate stage? What would this mean ethically and legally? (shrink)

This new edition of Baran and Davis's successful text provides a comprehensive, historically based, introduction to mass communication theory. Clearly written with examples, graphics, and other materials to illustrate key theories, this edition traces the emergence of two main bodies of mass communication theory: social, behavioral and critical, cultural. The authors emphasize that media theories are human creations that typically are intended to address specific problems or issues.

In philosophy and rhetorical studies, self-knowledge inscribes the absolutely indivisible line that separates “the human” from “the animal.” Autodeixis, the self-reflexive power of the I, is the condition both for language acquisition and for reason; it names an exceptional sort of auto–affection in which a being demonstrates the capacity to step back from itself enough to recognize itself and so to refer to itself as itself. What I propose in this article, however, is that autodeixis involves not a specifically human (...) power to disclose an ontological as such but the extrahuman operations of an allegorical as if. The presumption of self-knowledge is not an innate quality of “the human” but the already relational condition for any living being that must repeat itself to be itself. A kind of preoriginary rhetoricity, I argue, is the very condition for the singularity and functioning of any living being. (shrink)

: Because I reject the notion that physical characteristics constitute cultural membership, I argue that, even if the claim were persuasive that deafness is a culture rather than a disability, there is no reason to fault hearing parents who choose cochlear implants for their deaf children.

In lieu of an abstract, here is a brief excerpt of the content:Kennedy Institute of Ethics Journal 11.3 (2001) 219-220 [Access article in PDF] Introduction In the last couple of decades,commodification has become almost a buzz-word in bioethics. As we become technically more adept at detaching elements of human bodies and making use of them for others, it seems as if more and more things-from motherhood to gametes to kidneys to our very DNA-can be borrowed, rented, bought, and sold. Other (...) technology allows us unprecedented influence over the characteristics of our offspring (unprecedented, that is, if we ignore the many cultures in which children were and are routinely discarded because they are the wrong sex, disabled, or the product of multiple births). It is common, for example, for writers to worry that the availability of pre-implantation genetic diagnosis will seduce parents into thinking of their children as commodities, to be ordered in much the same way as automobiles, with the inevitable concomitant that they will want to "return" children who do not measure up to their specifications.Unfortunately, a great deal of the talk about "commodification" has been clumsy and sloppy. The term has been used as a magic bullet, as if saying "But that's commodification!" is the same as having made an argument. In fact, commodification of human persons, human bodies, human labor, human relationships, is a complex matter. In many human dealings, commodified and noncommodified understandings of the same thing, or the same transaction, exist more or less comfortably together. Most Westerners condemn commercial sex, for example, while at the same time knowing that in most times and places in the world, marriage was and is thought of as primarily an economic relationship. The common use of "cheap" in post-World War II American slang to describe a teenage woman who is more sexually available than her peers perfectly captures the market rhetoric inherent in respectable American sexual mores.Given this complexity, it is not surprising that many writers in bioethics have gravitated to the work of Margaret Jane Radin. In her two books, Contested Commodities (Harvard University Press, 1996) and Reinterpreting Property (University of Chicago Press, 1993), and many articles, [End Page 219] Radin has taken on the problem of commodification without falling into either sentimentality or cynicism. She is a careful thinker and a careful (and demanding!) writer. We have long valued her work as we have sought to grapple with the many ways in which the problem of commodification arises in bioethics. In this issue of the Kennedy Institute of Ethics Journal, entitled "Who's Afraid of Commodification?," we have asked three colleagues to join us in reflecting on aspects of the problem of commodification in bioethics. We are especially delighted that Radin agreed to respond to our efforts in this direction.Lisa Sowle Cahill takes the discussion of commodification to a new level, as she focuses on global ethics, especially genetic research and the marketing and accessibility of pharmaceuticals. Dena S. Davis explores the debates over refusal of treatment and rational suicide and concludes that to put a value on particular pieces of one's lifespan does not necessarily lead to negative aspects of commodification. Ronald M. Green analyzes Radin's use of Kant. Suzanne Holland addresses commodification of body parts, from gametes to cadaveric tissue, and concludes with some specific recommendations. Thomas A. Shannon takes a fresh look at the problem of whether we should allow the sale of organs; he shares with Holland a special concern for the rhetoric of commodification. Finally, Margaret Jane Radin responds to the preceding essays, asking four "stubbornly difficult" questions, questions that show that the debate about commodification is only just begun. Dena S. Davis and Suzanne Holland... (shrink)

In a 1917 essay entitled “A Difficulty in the Path of Psychoanalysis,” Freud suggests that modern science has dealt three devastating blows to human pride: the Copernican revelation that the earth revolves around the sun, decentering man’s presumed cosmological place in the universe as “lord of the world”; the Darwinian revelation that man shares a common ancestor with apes, which indicates that he is not inherently “a being different from animals or superior to them”; and the Freudian revelation that consciousness (...) is mostly ruled by the unconscious, which indicates that the ego is not master of “its own house” (1957–74, 139–41). Of these narcissistic wounds, each still gaping today, the second most interests us .. (shrink)

When the benefits of surgery do not outweigh the harms or where they do not clearly do so, surgical interventions become morally contested. Cutting to the Core examines a number of such surgeries, including infant male circumcision and cutting the genitals of female children, the separation of conjoined twins, surgical sex assignment of intersex children and the surgical re-assignment of transsexuals, limb and face transplantation, cosmetic surgery, and placebo surgery.

The risks and benefits of genetic research extend beyond individual subjects. Genetic research can also affect the communities to which the subjects belong, by rewriting the narratives and reconfiguring the identities that members of the community share and live by. These far‐ranging effects raise special concerns for obtaining informed consent, for which there is no simple solution.

This past July, five professional societies, whose members together provide the majority of clinical care in the United States, published a statement objecting to “inappropriate legislative interference” with the physician‐patient relationship and reiterated the importance of “putting patients’ best interests first.” Such a collective response is helpful, but given the apparently growing interest among legislators in legislating aspects of physician‐patient communications, individual physicians, too, may have to face this problem. What should a physician do when confronted with a law that (...) attempts to intervene in the doctor‐patient relationship in a way that the physician believes undercuts good medical care? (shrink)

Many healthy older people are very afraid of becoming demented as they age. As people who currently value autonomy, dignity and independence, they presumably would wish to use some form of advance...

Advances in genetic research and technology can have a profound impact on identity and family dynamics when genetic findings disrupt deeply held assumptions about the nuclear family. Ancestry tracing and paternity testing present parallel risks and opportunities. As these latter uses are now available over the internet directly to the consumer, bypassing the genetic counselor, consumers need adequate warning when making use of these new modalities.

This article argues that rhetorical theory will never dominate a quasi-originary and ontolgising rhetoricity that nonetheless calls for it. This rhetoricity is not simply a game played ‘in the world’, to borrow Derrida's phrasing; it is—like writing, like metaphoricity, like the ‘yes-yes’ or (en)gage—one more name for ‘the game of the world’. To get some traction on this undeclinable yet unmasterable rhetoricity, we’ll examine what Derrida calls ‘a danger of rhetoricism’ in de Man's work, a tendency to overestimate the authority (...) of the linguistic, the verbal, the discursive. The goal is not so much to substantiate Derrida's suspicions about de Man's ‘rhetoricism’ as it is to get on the tail of a rhetorical force that is irreducible to it, an ineluctable affectability or responsivity that is bound up in the very structure of sur-vival. (shrink)

This essay is composed of five stories written by practicing physicians about their patients. Each clinical story describes a challenging ethical condition–potential abuse of medical power, gravely ill and probably over-treated newborns, iatrogenic narcotic addiction, deceived dying people. Rather than singling out one ethical conflict to resolve or adjudicate, the authors attempt, through literary methods, to grasp the singular experiences of their patients and to act according to the deep structures of their patients' lives. Examining these five stories with simple (...) literary tools–attention to narrative frames, time, plot, and desire–reveals the mechanisms through which acts of writing and reading contribute to clinical clarity and ethical actions. (shrink)

: In neocolonial contexts of globalization, the epistemological terrain of radical diversity poses significant ethical challenges to transnational feminisms. In view of historical associations between knowledge and discourses of love which were conditioned by imperialist brands of humanism and benevolence under colonialism, this paper argues for a deconstructionist approach to conceptualizing love in relation to knowledge and for an ethics that severs the association with benevolence, instead making alterity the basis for its account.

This book is a cross-cultural and interdisciplinary text that employs a problem-based approach to guide readers through the methods, challenges, and possibilities of feminist ethnography. The authors tease out the influences of feminist ethnography across a variety of disciplines including women's and gender studies, critical race studies, ethnic studies, and others.

As considerações de Merleau-Ponty sobre a historicidade são significativas, tanto como um relato fenomenológico, quanto como um relato existencial de nossa situação histórica. Naturalmente, estes aspectos de seu trabalho não se excluem mutuamente, mas se entrelaçam. E cada aspecto contribui para o sentido da crise da historicidade humana. Primeiro consideraremos a crise fenomenológica da historicidade – ou seja, consideraremos a crise da historicidade fenomenologicamente. Esta é a tentativa de revelar as condições da possibilidade da história a partir da história ou (...) da estrutura de nossa situação histórica – onde a posição de Merleau-Ponty se afasta da fenomenologia husserliana. Em seguida, consideraremos a crise existencial de historicidade – ou seja, consideraremos a crise de historicidade existencialmente. Esta é a tentativa de compreender o imperativo de que as coisas são importantes para nós historicamente. Finalmente, vamos indicar brevemente a importância destes aspectos de nossa historicidade como um entrelaçamento crítico. Este entrelaçamento crítico revela a intrusão mútua do “como” e do “porquê” de nossa historicidade, que Merleau-Ponty descreve no final de sua carreira como uma existência chiasmática dentro da carne do mundo. O cruzamento crítico como interrogatório de nosso ser histórico fornece o “quem”, “o quê”, “quando” e “onde” de nossa historicidade. (shrink)

The sixteen essays in Gender Struggles address a wide range of issues in gender struggles, from the more familiar ones that, for the last thirty years, have been the mainstay of feminist scholarship, such as motherhood, beauty, and sexual violence, to new topics inspired by post-industrialization and multiculturalism, such as the welfare state, cyberspace, hate speech, and queer politics, and finally to topics that traditionally have not been seen as appropriate subjects for philosophizing, such as adoption, care work, and the (...) home. (shrink)

In Giving an Account of Oneself, Judith Butler demonstrates the priority of rhetoric to ethics, noting that any giving of an account already involves the scene of address: a relational dimension of language which supersedes the account itself . You demonstrate in The Telephone Book and elsewhere that you are called into being, that the call precedes you, indicating the priority of rhetoric to a certain pre-Heideggerian ontology. A major concern of this special issue of Philosophy and Rhetoric involves the (...) ways in which “the human” is constructed and/or deconstructed through this predicament of addressivity, particularly when the address comes in from or goes out to a nonhuman other: say, an animal, an .. (shrink)

But my real cat is not Alice’s little cat … because I am certainly not about to conclude hurriedly, upon waking, as Alice did, that one cannot speak with a cat on the pretext that it doesn’t reply or that it always replies the same thing. Everything that I am about to entrust to you no doubt comes back to asking you to respond to me, you, to me, reply to me concerning what it is to respond. If you can. (...) The said question of the said animal in its entirety comes down to knowing not whether the animal speaks but whether one can know what respond means. And how to distinguish the response from a reaction.A response that does not respond to a question is a response that is not the solution to a problem or the .. (shrink)

: It is possible and necessary to compare stretches of human life with other goods, such as the good of conserving resources for others. A minute of human life is not of infinite value; all else being equal, a minute of life is less valuable than 10 years of the same life. Nevertheless, this ability to evaluate human life does not necessarily lead to total commodification of human life.