Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.

No consensus yet exists on how to handle incidental fnd-ings in human subjects research. Yet empirical studies document IFs in a wide range of research studies, where IFs are fndings beyond the aims of the study that are of potential health or reproductive importance to the individual research participant. This paper reports recommendations of a two-year project group funded by NIH to study how to manage IFs in genetic and genomic research, as well as imaging research. We conclude that researchers (...) have an obligation to address the possibility of discovering IFs in their protocol and communications with the IRB, and in their consent forms and communications with research participants. Researchers should establish a pathway for handling IFs and communicate that to the IRB and research participants. We recommend a pathway and categorize IFs into those that must be disclosed to research participants, those that may be disclosed, and those that should not be disclosed. (shrink)

Returning genomic research results to family members raises complex questions. Genomic research on life-limiting conditions such as cancer, and research involving storage and reanalysis of data and specimens long into the future, makes these questions pressing. This author group, funded by an NIH grant, published consensus recommendations presenting a framework. This follow-up paper offers concrete guidance and tools for implementation. The group collected and analyzed relevant documents and guidance, including tools from the Clinical Sequencing Exploratory Research Consortium. The authors then (...) negotiated a consensus toolkit of processes and documents. That toolkit offers sample consent and notification documents plus decision flow-charts to address return of results to family of living and deceased participants, in adult and pediatric research. Core concerns are eliciting participant preferences on sharing results with family and on choice of a representative to make decisions about sharing after participant death. (shrink)

Cook (1995) criticized Kosslyn, Chabris, Marsolek & Koenig's (1992) network simulation models of spatial relations encoding in part because the absolute position of a stimulus in the input array was correlated with its spatial relation to a landmark; thus, on at least some trials, the networks did not need to compute spatial relations. The network models reported here include larger input arrays, which allow stimuli to appear in a large range of locations with an equal probability of being above (...) or below a “bar,” thus eliminating the confound present in earlier models. The results confirm the original hypothesis that as the size of the network's receptive fields increases, performance on a coordinate spatial relations task (which requires computing precise, metric distance) will be relatively better than on a categorical spatial relations task (which requires computing above/below relative to a landmark). (shrink)

Cook (1995) criticizes the work of Jacobs and Kosslyn (1994) on spatial relations, shape representations, and receptive fields in neural network models on the grounds that first‐order correlations between input and output unit activities can explain the results. We reply briefly to Cook's arguments here (and in Kosslyn, Chabris, Marsolek, Jacobs & Koenig, 1995) and discuss how new simulations can confirm the importance of receptive field size as a crucial variable in the encoding of categorical and coordinate spatial relations (...) and the corresponding shape representations; such simulations would testify to the computational distinction between the different types of representations. (shrink)

In Altered Sensations: Rudolph Koenig’s Acoustical Workshop in Nineteenth-Century Paris, David Pantalony achieves the difficult goal of balancing technical detail and historical narrative in his account of Rudolph Koenig and the nineteenth-century Parisian scientific instrument trade. The Parisian instrument making trade, particularly that of acoustical instruments, was at a high point in the mid-nineteenth century. Chief among scientific instrument makers was Rudolph Koenig (1832-1901), whose atelier at 30 Hautefeuille was at once an artisanal studio, a laboratory, a (...) workshop and a showroom. The negotiations necessary for one building, and one person, to channel such different activities is one of the main themes of Pantalony’s book. Pantalony shows that Koenig’s atelier was central to disputes surrounding the creation of the “modern soundscape” (p. 170). Debates regarding analytic versus holistic conceptions of sound, “objective” visual versus “subjective” by-ear modes of perception and measurement, and experimental versus theoretical results are all prominent in the text, and all framed by the different, but not disparate, functions of Koenig’s atelier; the building acts as a multi-faceted lens through which Pantalony considers Koenig and his instruments in their artistic, intellectual, commercial and social contexts. (shrink)

Darwin’s (1871/1981) observation that evolution has produced in us certain emotions responding to right and wrong conduct that lack any obvious basis in individual utility is a useful springboard from which to clarify the role of emotion in moral judgment. The problem is whether a certain class of moral judgment is “constituted” or “driven by” emotion (Greene, 2008, p. 108) or merely correlated with emotion while being generated by unconscious computations (e.g., Huebner, Dwyer, & Hauser, 2008). With one exception, all (...) of the “personal” vignettes devised by Greene and colleagues (2001, 2004) and subsequently used by other researchers (e.g., Koenigs et al., 2007), in their fMRI and behavioral studies of emotional engagement in moral judgment, involve violent crimes or torts. These studies thus do much more than highlight the role of emotion in moral judgment; they also support the classical rationalist thesis that moral rules are engraved in the mind. (shrink)

Most commonly, the scientific realism debate is seen as dividing those who do and do not think that the striking empirical and practical successes of at least our best scientific theories indicate with high probability that those theories are ‘approximately true’. But I want to suggest that this characterization of the debate has far outlived its usefulness. Not only does it obscure the central differences between two profoundly different types of contemporary scientific realist, but even more importantly it serves to (...) disguise the most substantial points of actual disagreement between these two kinds of realists and those who instead think the historical record of scientific inquiry itself reveals that such realism is untenable in either form. (shrink)

PHOTO ID 121339257© Designer491| Dreamstime.com ABSTRACT When physicians use their clinical knowledge and skills to advance the well-being of their patients, there may be apparent conflict between patient autonomy and physician beneficence. We are skeptical that today’s medical ethics education adequately fosters future physicians’ commitment to beneficence, which is both rationally defensible and fundamentally consistent with patient autonomy. We use an ethical dilemma that was presented to a group of third-year medical students to examine how ethics education might be causing (...) them to give undue deference to autonomy, thereby undermining their commitment to beneficence. INTRODUCTION The right of patients to choose which treatments they prefer is rooted in today’s social mores and taught as a principle of medical ethics as respect for autonomy. Yet, when physicians use their clinical knowledge and skills to advance the well-being of their patients, there may be a conflict between patient autonomy and physician beneficence. We are skeptical that today’s medical ethics education adequately fosters a commitment to beneficence, which is both rationally defensible and fundamentally consistent with patient autonomy. I. An Ethical Dilemma The impetus for this paper arose when students who were completing their third clinical year discussed a real-life ethical dilemma. A middle-aged man developed a pulmonary hemorrhage while on blood thinners for a recently placed coronary stent. The bleeding was felt to be reversible, but the patient needed immediate intubation or he would die. The cardiologist was told that the patient previously expressed to other physicians that he never wanted to be intubated. However, the cardiologist made the decision to intubate the patient anyway, and the patient eventually recovered.[1] Students were asked if they believed that the cardiologist had acted ethically. Their overwhelming response was, “No, the patient should have been allowed to die.” We looked into how students applied ethical reasoning to conclude that this outcome was ethically preferred. To explore how the third-year clinical experience might have formed the students’ judgment, we presented the same case to students who were just beginning their third year. Their responses were essentially uniform in recommending intubation. While there is likely more than one reasonable view in this case, we agree with the physician and the younger medical students that intubation was the ethically appropriate decision and will present an argument for it. But first, we explain the reasoning behind the more advanced medical students’ decision to choose patient autonomy at the expense of beneficence. II. Medical Ethics Education and the Priority of Autonomy Beauchamp and Childress’s Principles of Biomedical Ethics, first published in 1979 and now in its 8th edition, is a significant part of the formal ethics education in medical school.[2] Students learn an ethical decision-making approach based on respect for four ethical principles: autonomy, beneficence, nonmaleficence, and justice. While Beauchamp and Childress officially afford no prima facie superiority to any principle, the importance of respect for patient autonomy has increased through the editions of their book. For example, early editions of their book opposed the legalization of physician-assisted death compared to recent editions that defended it.[3] As another example, Beauchamp and Childress make paternalism harder to justify by adding an autonomy-protecting condition to the list of conditions for acceptable paternalism.[4] Authority, they contend, need not conflict with autonomy—provided the authority is autonomously chosen.[5] “The main requirement,” they write, “is to respect a particular patient’s or subject’s autonomous choices, whatever they may be.[6] In the principlism of Beauchamp and Childress, autonomy now seems to have a kind of default priority.[7] However, the bioethics discourse has strong counternarratives, noting some movement to elevate the role of beneficence and to respect the input of stakeholders, including the family and the healthcare team. Ethics education achieves particular relevance in the third clinical year when students become embedded in the care of patients and learn from what has been called the informal curriculum. They observe how attending physicians approach day-to-day ethical problems at the patient’s bedside. In this context, students observe the importance of informed consent for serious treatments or invasive procedures, a practice that highlights the principle of patient autonomy. In both the formal and informal curriculum, medical students observe how, in the words of Paul Wolpe, “patient autonomy has become the central and most powerful principle in ethical decision-making in American medicine.”[8] In short, students appear to learn a deference for patient autonomy. This curricular shift in favor of autonomy coincides with legal developments that protect patients’ rights and decision-making with respect to their healthcare choices. The priority of autonomy in medicine benefits patients by reflecting their choices and, in some cases, their fundamental liberty. III. The Practice of Medicine and the Commitment to Beneficence There are many critiques of the dominant place that autonomy has in biomedical ethics,[9] especially considering that autonomy seems to be biased toward individualistic, Western, and somewhat American culture-driven values.[10] In addition, many bioethical dilemmas are cast as a conflict between autonomy and beneficence. Our point is that medical students bring to their study of medicine a commitment to beneficence that seems to be suppressed by practical ethics education. We think this commitment is rationally defensible and should be nurtured. It is striking that young medical students have a pre-reflective commitment to beneficence at all. For, as we mentioned, it is not just medicine but Western culture generally that prioritizes autonomy in settling ethical dilemmas. In wanting to act for the good of others (rather than simply agreeing to what others want), physicians are already swimming somewhat against the cultural tide.[11] However, doing so makes sense, given the nature of medicine and the profession of healing. When prospective medical students are asked why they wish to become physicians, the usual answer is some variation on caring for the sick and preventing disease. It is unlikely that a reason to become a physician is to respect a patient’s autonomy. It would be easy to dismiss medical students’ commitment to beneficence as a mere intuition and contrary to a more reasoned and deliberative approach. Beauchamp and Childress seem to minimize the value of physician intuition, stating that justifications for certain procedures are “…supported by good reasons. They need not rest merely in intuition or feeling.”[12] Henry Richardson writes that “situational or perceptive intuition…leaves the reasons for decision unarticulated.”[13] We think this is a crude and rather thin way of understanding intuition. Some bioethicists have defended intuition as essential to the practice of medicine and not something opposed to reason.[14] In the case we describe, we believe the ethical justifications s for the patient’s intubation are fundamentally sound: the patient did not have a “do not intubate” order written in the chart, the emergency intubation had not been foreseen, so the patient did not have the opportunity to consent to or reject intubation; the patient had consented to the treatment for his cardiac disease so his consent for intubation could have been assumed;[15] and the consequences of respecting his autonomy did not justify allowing him to die.[16] While it is possible to have more than one reasonable view on this case, we think the case for beneficence is strong and certainly should not be dismissed out of hand. We do not deny that if a patient makes a clearly documented, well-informed decision to forgo intubation that this decision ought to be respected by the physician (even if the physician disagrees with the patient’s decision). But, in this situation, as in many others in the practice of medicine, the patient’s real wishes and preferences are not well-articulated in advance. There are many cases where a physician acts based on what she believes the patient, or the surrogate, would want, sometimes in situations that do not allow much time for reflection. An example might be resuscitation of a newborn at the borderline of viability. In their ethics education, beneficence would mean acting first to save a life. If the patient or surrogate makes an informed decision to the contrary, a beneficent physician respects that autonomous decision. In the case presented, the patient expressed gratitude to the cardiologist when extubated. But what if he had expressed anger at the physician for violating his autonomy? There are those who could argue that not only was intubation ethically wrong but that the cardiologist put himself in legal jeopardy by his actions (especially if there had been a written refusal applicable to the specific situation). In the example we use, we point out that the cardiologist may not have escaped a lawsuit if the patient had died without intubation. His family, when hearing the circumstances, may have sued for failure to act and dereliction of the cardiologist’s duty to save him. Beyond a potential legal challenge for either action or inaction, there is an overriding ethical question the cardiologist had to address: what course would be most satisfying to his conscience? Would he rather allow a patient to die for fear of recrimination, or act to save his life, regardless of the personal consequences? In the absence of real knowledge about the patient’s considered wishes, it is most reasonable to err on the side of promoting patient well-being. A physician’s commitment to beneficence is not necessarily a way of undermining a patient’s autonomy. In acting for the patient's good, physicians are also acting on what it is reasonable to believe a patient (or most patients, perhaps) would want, which is obviously connected to what a patient does want. Pellegrino and Thomasma argue that beneficence includes respect for a patient’s autonomy since “the best interests of the patient are intimately linked with their preferences.”[17] Instead of conceptualizing ethical dilemmas in medicine as conflicts between autonomy and beneficence, it is possible that medical schools could teach students that truly practicing beneficence is a way of valuing patient autonomy, especially when the patient’s wishes are not specific to the situation and are not clearly expressed. CONCLUSION It is important for students and practicing physicians to understand the principle of respect for patient autonomy in a pluralistic society that demands personal self-determination. However, the role of the physician as a beneficent healer should not be diminished by this respect for autonomy. Respecting a patient’s autonomy is grounded in and manifested by physician beneficence.[18] That is, seeking what is good for the patient can only be good if it respects their personhood and dignity. We propose that a commitment to beneficence, incipient in young medical students, should be developed over time with their other clinical reasoning skills. Such a commitment need not be sacrificed on the altar of patient autonomy. Beneficence needs greater relative moral weight with students as they proceed in their ethics education. - [1] S. Jauhar, “When Doctors Need to Lie,” New York Times, February 22, 2014, https://www.nytimes.com/2014/02/23/opinion/sunday/when-doctors-need-to-lie.html. [2] T. L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 8th ed. (New York, NY: Oxford University Press, 2019). [3] Louise A. Mitchell, “Major Changes in Principles of Biomedical Ethics,” The National Catholic Bioethics Quarterly 14, no. 3 (2014): 459–75, https://doi.org/10.5840/ncbq20141438. [4] Tom L. Beauchamp and James F. Childress, Principles of Biomedical Ethics, 8th ed. (New York, NY: Oxford University Press, 2019), 238. [5] Beauchamp and Childress, 103. [6] Beauchamp and Childress, p. 108. [7] For other accounts that prioritize autonomy, see e.g. Allen E. Buchanan and Dan W. Brock, Deciding for Others: The Ethics of Surrogate Decision Making (Cambridge University Press, 1989), 38–39; R Gillon, “Ethics Needs Principles—Four Can Encompass the Rest—and Respect for Autonomy Should Be ‘First among Equals,’” Journal of Medical Ethics 29, no. 5 (October 2003): 307–12, https://doi.org/10.1136/jme.29.5.307. For examples of critiques of these accounts, see footnote 9. [8] P. R. Wolpe, “The Triumph of Autonomy in American Bioethics: A Sociological View,” in Bioethics and Society: Constructing the Ethical Enterprise, p. 43. [9] V. A. Entwistle et al., “Supporting Patient Autonomy: The Importance of Clinician-Patient Relationships,” Journal of General Internal Medicine 25, no. 7 (July 2010): 741–45; C. Foster, Choosing Life, Choosing Death: The Tyranny of Autonomy in Medical Ethics and Law, 1st ed. (Oxford ; Hart Publishing, 2009); O. O’Neill, Autonomy and Trust in Bioethics, The Gifford Lectures, University of Edinburgh 2001 (Cambridge, UK: Cambridge University Press, 2002). [10] P. Marshall and B. Koenig, “Accounting for Culture in a Globalized Bioethics,” The Journal of Law, Medicine & Ethics: A Journal of the American Society of Law, Medicine & Ethics 32, no. 2 (2004): 252–66; R. Fan, “Self-Determination vs. Family-Determination: Two Incommensurable Principles of Autonomy,” Bioethics 11, no. 3–4 (1997): 309–22. [11] Arguments stressing the importance of beneficence, as ours does here, certainly approach paternalistic arguments. We set aside the complex issue of paternalism for purposes of this paper and simply note that the principle of beneficence as such does not say anything specifically about acting against the patient’s will. In the case study that focuses this paper, we do not believe the patient’s will or wishes were clearly indicated. [12] Beauchamp and Childress, Principles of Biomedical Ethics, p. 20, see note 2 above. [13] H. S. Richardson, “Specifying, Balancing, and Interpreting Bioethical Principles,” The Journal of Medicine and Philosophy: A Forum for Bioethics and Philosophy of Medicine 25, no. 3 (January 1, 2000): 285–307, p. 287. [14] H. D. Braude, Intuition in Medicine a Philosophical Defense of Clinical Reasoning (Chicago ; University of Chicago Press, 2012). [15] R. Kukla, “Conscientious Autonomy: Displacing Decisions in Health Care,” The Hastings Center Report 35, no. 2 (2005): 34–44. [16] M. Schermer, The Different Faces of Autonomy: Patient Autonomy in Ethical Theory and Hospital Practice, vol. 13, Library of Ethics and Applied Philosophy (Dordrecht: Springer Netherlands, 2002). [17] E. D. Pellegrino and D. C. Thomasma, For the Patient’s Good - the Restoration of Beneficence in Health Care (New York, NY: Oxford University Press, 1988), p. 29. [18] Pellegrino and Thomasma, For the Patient’s Good. 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We analyse the extent of possible computations following Hogarth ([2004]) conducted in Malament–Hogarth (MH) spacetimes, and Etesi and Németi ([2002]) in the special subclass containing rotating Kerr black holes. Hogarth ([1994]) had shown that any arithmetic statement could be resolved in a suitable MH spacetime. Etesi and Németi ([2002]) had shown that some relations on natural numbers that are neither universal nor co-universal, can be decided in Kerr spacetimes, and had asked specifically as to the extent of computational limits there. (...) The purpose of this note is to address this question, and further show that MH spacetimes can compute far beyond the arithmetic: effectively Borel statements (so hyperarithmetic in second-order number theory, or the structure of analysis) can likewise be resolved: Theorem A. If H is any hyperarithmetic predicate on integers, then there is an MH spacetime in which any query ? n H ? can be computed. In one sense this is best possible, as there is an upper bound to computational ability in any spacetime, which is thus a universal constant of that spacetime. Theorem C. Assuming the (modest and standard) requirement that spacetime manifolds be paracompact and Hausdorff, for any spacetime there will be a countable ordinal upper bound, , on the complexity of questions in the Borel hierarchy computable in it. Introduction 1.1 History and preliminaries Hyperarithmetic Computations in MH Spacetimes 2.1 Generalising SADn regions 2.2 The complexity of questions decidable in Kerr spacetimes An Upper Bound on Computational Complexity for Each Spacetime CiteULike Connotea Del.icio.us What's this? (shrink)

We look at various notions of a class of definability operations that generalise inductive operations, and are characterised as “revision operations”. More particularly we: (i) characterise the revision theoretically definable subsets of a countable acceptable structure; (ii) show that the categorical truth set of Belnap and Gupta’s theory of truth over arithmetic using \emph{fully varied revision} sequences yields a complete \Pi13 set of integers; (iii) the set of \emph{stably categorical} sentences using their revision operator ψ is similarly \Pi13 and which (...) is complete in Gödel’s universe of constructible sets L; (iv) give an alternative account of a theory of truth—realistic variance that simplifies full variance, whilst at the same time arriving at Kripkean fixed points. (shrink)

Objective: The objectives of this study are to understand the current functions, structure and operation of hospital ethics committees (HECs) in Shanghai and to facilitate their improvement. Methods: (1) A questionnaire survey, (2) interviews with secretaries and (3) on-site document reviews of HECs in Shanghai were used in the study, which surveyed 33 hospitals. Results: In Shanghai, 57.56% of the surveyed hospitals established HECs from 1998 to 2005. Most HECs used bioethical review of research involving human subjects as well as (...) bioethical review or consultation regarding medical care services and administrative decision- making. Of the surveyed HECs, 14.3% did not provide any formal bioethical training to the HECs’ members and many HECs had no standard operating procedures. Some HECs had no clear definition of what was “conflict of interest” that should be considered by the HECs, while 44.4% of the HECs did not perform continuing review. Discussion: After the issues of related national regulations, more and more hospitals established HECs in Shanghai, but the functions of HECs need to be further developed and formal training on bioethics should be provided to HEC members. To assure the independence and good performance of HECs, the conflict of interest procedure, the standard operating procedures and bioethical review should be improved. Conclusion: HECs in Shanghai had developed in the preceding 10 years and they played great roles in protecting the rights and welfare of human subjects and patients; some areas need improvement. (shrink)

This paper situates the moral domain of practice within the context of a particular description of nursing practice – one that sees human interaction at the heart of that practice. Such a description fits not only with professional rhetoric but also with literature from patients and recent empirical work exploring the nature of nursing practice.Martha Levine in her 1977 description of ethics, within the context of nursing practice, indicated that what was important from an ethical perspective was how we interact (...) with each other, with patients and colleagues, on a daily basis. What enables such interaction to display moral sensitivity, insight into patient need, and a focus on the good for the patient? Of relevance when answering this question is the empirical evidence indicating that professional socialization, as a nurse or a doctor, may dull the individual’s moral sense. If this is the case, cognizance needs to be taken of such evidence when identifying theoretical approaches from mainstream ethics that may provide insight and value for nurse education. It is suggested that such insight and value can be gained from a consideration of the work of Aristotle, Murdoch, and Vetlesen. (shrink)

Dit boek is een inleiding in het denken over recht en staat met een zwaar accent op de vraag hoe de staat om moet gaan met religie. 0Paul Cliteur en Afshin Ellian zijn hoogleraar encyclopedie van de rechtswetenschap aan de universiteit van Leiden.

The basic notions of the theory of term rewriting are defined for terms that may involve function letters of infinite arity. A sufficient condition for completeness is derived, and its use demonstrated by the example of abstract clones over infinitary signatures.

Desmosomes are junctions involved in intercellular adhesion of epithelial cells and hemidesmosomes are junctions involved in adhesion of epithelia to basement membranes. Both are characterised at the ultrastructural level by dense cytoplasmic plaques which are linked to the intermediate filament cytoskeleton of the cells. The plaques strongly resemble each other suggesting a relationship between the two kinds of junctions, as implied by their names. Recent characterisation of the molecular components of the junctions shows they are, in fact, quite unrelated implying (...) that structural similarity is fortuitous. The molecular biology raises many fascinating problems relating to their structure and function. (shrink)