The informed consent process for genetic testing does not commonly address preferences regarding disclosure of results in the event of the patient's death. Adults being tested for familial colorectal cancer were asked whether they want their exome sequencing results disclosed to another person in the event of their death prior to receiving the results. Of 78 participants, 92% designated an individual and 8% declined to. Further research will help refine practices for informed consent.

Our recent paper advocating adaptive management of invasive nonnative species (INS) in Kings Bay, Florida received detailed responses from both Daniel Simberloff, a prominent invasion biologist, and Mark Sagoff, a prominent critic of invasion biology. Simberloff offers several significant lines of criticism that compel detailed rebuttals, and, as such, most of this reply is dedicated to this purpose. Ultimately, we find it quite significant that Simberloff, despite his other stated objections to our paper, apparently agrees with our argument that proposals (...) for alternative management of established INS (i.e., alternatives to minimization/eradication) should not be rejected on an a␣priori basis. We argue that more specific development and application of adaptive approaches toward INS management, whether in Kings Bay or other appropriate case studies, would be facilitated if ecosystem managers and invasion biologists follow Simberloff’s lead on this key point. While Sagoff largely shares (and, indeed, served as a primary source for developing) our general arguments that challenge common moral and scientific assumptions associated with invasion biology, he does question our suggestion that participatory adaptive management provides an appropriate framework for approaching environmental problems in which science and politics are inherently entangled. We attempt to answer this criticism through a brief sketch of what participatory adaptive management might look like for Kings Bay and how such an approach would differ from past management approaches. (shrink)

The Alternative Model of Personality Disorders integrates several theoretical models of personality functioning, including interpersonal theory. The interpersonal circumplex dimensions of warmth and dominance can be conceptualized as traits similar to those in AMPD Criterion B, but interpersonal theory also offers dynamic hypotheses about how these variables that change from moment to moment, which help to operationalize some of the processes alluded to in AMPD Criterion A. In the psychotherapy literature, dynamic interpersonal behaviors are thought to be critical for identifying (...) therapeutic alliance ruptures, yet few studies have examined moment-to-moment interpersonal behaviors that are associated with alliance ruptures at an idiographic level. The current study examined the concurrent and cross-lagged relationships between interpersonal behaviors and alliance ruptures within each session in the famous Gloria films. Interpersonal behaviors as well as alliance ruptures were calculated at half minute intervals for each dyad. We identified distinct interpersonal patterns associated with alliance ruptures for each session: Gloria ’s warmth was positively related with withdrawal ruptures concurrently in the session with Carl Rogers; Gloria’s dominance and coldness were related with increased confrontation ruptures in the session with Fritz Perls concurrently, while her coldness was also predicted by confrontation ruptures at previous moments; lastly, both Gloria’s dominance and Albert Ellis’s submissiveness were positively related with withdrawal ruptures. These interpersonal patterns demonstrated the promise of using AMPD dimensions to conceptualize momentary interpersonal processes related to therapy ruptures, as well as the clinical importance of attuning to repetitive, dyad-specific interpersonal cues of ruptures within each session. (shrink)

Airway mucin secretion is important pathophysiologically and as a model of polarized epithelial regulated exocytosis. We find the trafficking protein, SNAP23, selectively expressed in secretory cells compared with ciliated and basal cells of airway epithelium by immunohistochemistry and FACS, suggesting that SNAP23 functions in regulated but not constitutive epithelial secretion. Heterozygous SNAP23 deletant mutant mice show spontaneous accumulation of intracellular mucin, indicating a defect in baseline secretion. However mucins are released from perfused tracheas of mutant and wild-type mice at the (...) same rate, suggesting that increased intracellular stores balance reduced release efficiency to yield a fully compensated baseline steady state. In contrast, acute stimulated release of intracellular mucin from mutant mice is impaired whether measured by a static imaging assay 5 min after exposure to the secretagogue ATP or by kinetic analysis of mucins released from perfused tracheas during the first 10 min of ATP exposure. Together, these data indicate that increased intracellular stores cannot fully compensate for the defect in release efficiency during intense stimulation. The lungs of mutant mice develop normally and clear bacteria and instilled polystyrene beads comparable to WT mice, consistent with these functions depending on baseline secretion that is fully compensated. (shrink)

Ben Saunders claims that actual consent is not necessary for organ donation due to ‘normative consent’, a concept he borrows from David Estlund. Combining normative consent with Peter Singer's ‘greater moral evil principle’, Saunders argues that it is immoral for an individual to refuse consent to donate his or her organs. If a presumed consent policy were thus adopted, it would be morally legitimate to remove organs from individuals whose wishes concerning donation are not known. This paper disputes Saunders' arguments. (...) First, if death caused by the absence of organ transplant is the operational premise, then, there is nothing of comparable moral precedence under which a person is not obligated to donate. Saunders' use of Singer's principle produces a duty to donate in almost all circumstances. However, this premise is based on a flawed interpretation of cause and effect between organ availability and death. Second, given growing moral and scientific agreement that the organ donors in heart-beating and non-heart-beating procurement protocols are not dead when their organs are surgically removed, it is not at all clear that people have a duty to consent to their lives being taken for their organs. Third, Saunders' claim that there can be good reasons for refusing consent clashes with his claim that there is a moral obligation for everyone to donate their organs. Saunders' argument is more consistent with a conclusion of ‘mandatory consent’. Finally, it is argued that Saunders' policy, if put into place, would be totalitarian in scope and would therefore be inconsistent with the freedom required for a democratic society. (shrink)

In this lecture Evans studies one of the basic presuppositions of empiricism: the central doctrine of the theory of meaning of propositions, with special reference to the cleavage between verbal definition—the defining of words by reference to other words—and ostensive definition—the defining of a word by "pointing" to its object. The author shows that ostensive definition is wholly inadequate to the task of defining such words as nouns and adjectives—one can point only to their instances in the world and (...) not to what the noun or adjective actually refers. Thus with the breakdown of this distinction in definition goes the weakening of the division between mathematical and empirical sentences which together were believed to exhaust all possible meaningful expressions.—P. J. M. (shrink)

Curbside ethics consultations occur when an ethics consultant provides guidance to a party who seeks assistance over ethical concerns in a case, without the consultant involving other stakeholders, conducting his or her own comprehensive review of the case, or writing a chart note. Some have argued that curbside consultation is problematic because the consultant, in focusing on a single narrative offered by the party seeking advice, necessarily fails to account for the full range of moral perspectives. Their concern is that (...) any guidance offered by the ethics consultant will privilege and empower one party’s viewpoint over—and to the exclusion of—other stakeholders. This could lead to serious harms, such as the ethicist being reduced to a means to an end for a clinician seeking to achieve his or her own preferred outcome, the ethicist denying the broader array of stakeholders input in the process, or the ethicist providing wrongheaded or biased advice, posing dangers to the ethical quality of decision-making. Although these concerns are important and must be addressed, we suggest that they are manageable. This paper proposes using conflict coaching, a practice developed within the discipline of conflict management, to mitigate the risks posed by curbside consultation, and thereby create new “spaces” for moral discourse in the care of patients. Thinking of curbside consultations as an opportunity for “clinical ethics conflict coaching” can more fully integrate ethics committee members into the daily ethics of patient care and reduce the frequency of ethically harmful outcomes. (shrink)

This article presents the Pilgrimage Model as a template for educators wishing to lead students on site-specific studies of engaged learning. During the 2015–2016 academic year, a group of Georgeto...

Delivering high quality genomics-informed care to patients requires accurate test results whose clinical implications are understood. While other actors, including state agencies, professional organizations, and clinicians, are involved, this article focuses on the extent to which the federal agencies that play the most prominent roles — the Centers for Medicare and Medicaid Services enforcing CLIA and the FDA — effectively ensure that these elements are met and concludes by suggesting possible ways to improve their oversight of genomic testing.

IPCC SPECIAL REPORT ON CLIMATE CHANGE AND LAND (SRCCL) -/- Chapter 3: Climate Change and Land: An IPCC special report on climate change, desertification, land degradation, sustainable land management, food security, and greenhouse gas fluxes in terrestrial ecosystems.

Background and aims: Recent investigations have highlighted the value of neuropsychological testing for the assessment and screening of Alcohol-Related Brain Damage. The aim of the present study was to evaluate the suitability of the Addenbrooke’s Cognitive Examination and the Repeatable Battery for the Assessment of Neuropsychological Status for this purpose. Methods: Comparing 28 participants with ARBD and 30 alcohol-dependent participants without ARBD we calculated Area Under the Curve statistics, sensitivity and specificity values, base-rate adjusted predictive values, and likelihood ratios for (...) both tests. Results: High levels of screening accuracy were found for the total scores of both the ACE-III and RBANS at multiple cut-off points. Removing participants with a history of polysubstance from the samples improved the diagnostic capabilities of the RBANS substantially, while only minor improvements to the ACE-III’s accuracy were observed. Conclusions: Overall, both the ACE-III and RBANS are suitable tools for ARBD screening within an alcohol-dependent population, though the RBANS is the superior of the two. Clinicians using these tools for ARBD screening should be cautious of false-positive outcomes and should therefore combine them with other assessment methods and more detailed neuropsychological testing before reaching diagnostic decisions. (shrink)

The ability to reason independently from one's own goals or beliefs has long been recognised as a key characteristic of the development of formal operational thought. In this article we present the results of a study that examined the correlates of this ability in a group of 10-year-old children ( N = 61). Participants were presented with conditional and relational reasoning items, where the content was manipulated such that the conclusion to the arguments were either congruent, neutral, or incongruent with (...) beliefs, and either logically valid or logically invalid. Participants also received a measure of working memory capacity (the counting span task) and a measure of inhibitory control (the stop signal task). Indices of belief bias and logical reasoning on belief-based problems were predicted independently by both measures. In contrast logical reasoning on belief neutral problems was predicted by working memory alone. The findings suggest that executive functions play a key role in the development of children's ability to decontextualise their thinking. (shrink)

Alexithymia is a subclinical trait involving difficulty describing and identifying emotions. It is common in a number of psychiatric conditions. Alexithymia in children is sometimes measured by parent report and sometimes by child self-report, but it is not yet known how closely related the two measures are. This is an important question both theoretically and practically, in terms of research design and clinical practice. We conducted a preliminary study to investigate this question in a sample of 6- to 11-year-old neurotypical (...) children and their parents. Parent and child reports were not correlated, and 93% of parents under-estimated their child’s level of alexithymia relative to the child’s self-report. Based on these results, we hypothesize that when asked to report on the child’s alexithymia, children and parents may not be reporting on the same phenomenon, and thus these two measures may not be interchangeable. These provocative findings, however, must be considered preliminary: our analyses were sufficiently powered to detect a strong relation between the two types of report had one existed, but our analyses were not sufficiently powered to distinguish between a small relation and no relation at all. (shrink)

This essay, which is the editor's introduction to part 1 of a multipart symposium on quietism, also constitutes his call for symposium papers. The symposium is meant be comprehensive. It is described as political and broadly cultural as well as religious, and in religious terms is said to cover not only the Catholic and Protestant quietisms (most properly so called) of the late seventeenth and eighteenth centuries, but also the proto-quietisms of the medieval Western church and reputedly quietist aspects of (...) the Gnostic, Eastern Orthodox, early Hasidic, Shi'ite, Jain and other Indic, Taoist, and Zen religious traditions. This introduction emphasizes the secular approaches, mostly antipolitical or postphilosophical, that wear the adjective “quietist” metaphorically, including the postmodern currents that Martha Nussbaum has named “hip quietism” and the “minimalist” philosophical version developed by Wittgenstein and some of his successors, notably Richard Rorty. This introduction concludes with attention to Rorty's late essay “Naturalism and Quietism,” then with a dedication of the entire symposium to Rorty's memory. (shrink)

Using covariant derivatives and the operator definitions of quantum mechanics, gauge invariant Proca and Lehnert equations are derived and the Lorenz condition is eliminated in U(1) invariant electrodynamics. It is shown that the structure of the gauge invariant Lehnert equation is the same in an O(3) invariant theory of electrodynamics.

Across the world people in different societies structure their family relationships in many different ways. These relationships become encoded in their languages as kinship terminology, a word set that maps variably onto a vast genealogical grid of kinship categories, each of which could in principle vary independently. But the observed diversity of kinship terminology is considerably smaller than the enormous theoretical design space. For the past century anthropologists have captured this variation in typological schemes with only a small number of (...) model system types. Whether those types exhibit the internal co-selection of parts implicit in their use is an outstanding question, as is the sufficiency of typologies in capturing variation as a whole. We interrogate the coherence of classic kinship typologies using modern statistical approaches and systematic data from a new database, Kinbank. We first survey the canonical types and their assumed patterns of internal and external co-selection, then present two data-driven approaches to assess internal coherence. Our first analysis reveals that across parents’ and ego’s generation, typology has limited predictive value: knowing the system in one generation does not reliably predict the other. Though we detect limited co-selection between generations, “disharmonic” systems are equally common. Second, we represent structural diversity with a novel multidimensional approach we term kinship space. This approach reveals, for ego’s generation, some broad patterning consistent with the canonical typology, but diversity is considerably higher than classical typologies suggest. Our results strongly challenge the descriptive adequacy of the set of canonical kinship types. (shrink)

Mobile devices with health apps, direct-to-consumer genetic testing, crowd-sourced information, and other data sources have enabled research by new classes of researchers. Independent researchers, citizen scientists, patient-directed researchers, self-experimenters, and others are not covered by federal research regulations because they are not recipients of federal financial assistance or conducting research in anticipation of a submission to the FDA for approval of a new drug or medical device. This article addresses the difficult policy challenge of promoting the welfare and interests of (...) research participants, as well as the public, in the absence of regulatory requirements and without discouraging independent, innovative scientific inquiry. The article recommends a series of measures, including education, consultation, transparency, self-governance, and regulation to strike the appropriate balance. (shrink)

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

Using data on the ‘career’ paths of one thousand ‘leading scientists’ from 1450 to 1900, what is conventionally called the ‘rise of modern science’ is mapped as a changing geography of scientific practice in urban networks. Four distinctive networks of scientific practice are identified. A primate network centred on Padua and central and northern Italy in the sixteenth century expands across the Alps to become a polycentric network in the seventeenth century, which in turn dissipates into a weak polycentric network (...) in the eighteenth century. The nineteenth century marks a huge change of scale as a primate network centred on Berlin and dominated by German-speaking universities. These geographies are interpreted as core-producing processes in Wallerstein’s modern world-system; the rise of modern scientific practice is central to the development of structures of knowledge that relate to, but do not mirror, material changes in the system. (shrink)

Curbside ethics consultations occur when an ethics consultant provides guidance to a party who seeks assistance over ethical concerns in a case, without the consultant involving other stakeholders, conducting his or her own comprehensive review of the case, or writing a chart note. Some have argued that curbside consultation is problematic because the consultant, in focusing on a single narrative offered by the party seeking advice, necessarily fails to account for the full range of moral perspectives. Their concern is that (...) any guidance offered by the ethics consultant will privilege and empower one party’s viewpoint over—and to the exclusion of—other stakeholders. This could lead to serious harms, such as the ethicist being reduced to a means to an end for a clinician seeking to achieve his or her own preferred outcome, the ethicist denying the broader array of stakeholders input in the process, or the ethicist providing wrongheaded or biased advice, posing dangers to the ethical quality of decision-making. Although these concerns are important and must be addressed, we suggest that they are manageable. This paper proposes using conflict coaching, a practice developed within the discipline of conflict management, to mitigate the risks posed by curbside consultation, and thereby create new spaces for moral discourse in the care of patients. Thinking of curbside consultations as an opportunity for clinical ethics conflict coaching can more fully integrate ethics committee members into the daily ethics of patient care and reduce the frequency of ethically harmful outcomes. (shrink)