As genomic science has evolved, so have policy and practice debates about how to describe and evaluate the ways in which genomic information is treated for individuals, institutions, and society. The term genetic exceptionalism, describing the concept that genetic information is special or unique, and specifically different from other kinds of medical information, has been utilized widely, but often counterproductively in these debates. We offer genomic contextualism as a new term to frame the characteristics of genomic science in the debates. (...) Using stasis theory to draw out the important connection between definitional issues and resulting policies, we argue that the framework of genomic contextualism is better suited to evaluating genomics and its policy-relevant features to arrive at more productive discussion and resolve policy debates. (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)

Beginning in the 20th century, scientific research came to be dominated by a growing class of credentialed, professional scientists who overwhelmingly displaced the learned amateurs of an earlier time. By the end of the century, however, the exclusive realm of professional scientists conducting research was joined, to a degree, by “citizen scientists.” The term originally encompassed non-professionals assisting professional scientists by contributing observations and measurements to ongoing research enterprises. These collaborations were especially common in the environmental sciences, where citizen scientists (...) participated in counting wildlife and measuring environmental conditions. Later, patient groups began to play a more active role in supporting clinical trials and collecting health records from affected individuals. (shrink)

This paper examines the historical rise of both cardiopulmonary resuscitation and the do-not-resuscitate order and the wisdom of their continuing status in U.S. hospital practice and policy. The practice of universal presumed consent to CPR and the resulting DNR policy are the products of a particular time and were responses to particular problems. In order to keep the excesses of technology in check, the DNR policies emerged as a response to the in-hospital universal presumed consent to CPR. We live with (...) this historical concretion, which seems to perpetuate a false culture that the patient's wishes must be followed. The authors are critical of the current U.S. climate, where CPR and DNR are viewed as two among a panoply of patient choices, and point to UK practice as an alternative. They conclude that physicians in the United States should radically rethink approaches to CPR and DNR. (shrink)

A psychiatrist who has received international recognition for her research on the neural basis of primate social cognition, Leslie Brothers, M.D., offers here a major argument about the social dimension of the human brain, drawing on both her own work and a wealth of information from research laboratories, neurosurgical clinics, and psychiatric wards. Brothers offers the tale of Robinson Crusoe as a metaphor for neuroscience's classic notion of the brain: a starkly isolated figure, working, praying, writing alone. But the famous (...) castaway of literature, she notes, came from society and returned to society. So too with our brains: they have evolved a specialized capacity for exchanging signals with other brains--they are designed to be social. This can be seen in the brain's sensitive attunement to the meanings of facial expressions and physical gestures and the way it assigns mental lives to physical bodies--a feat we too often take for granted. Brothers describes fascinating case studies that show that certain kinds of brain damage can destroy a patient's ability to interpret faces, leaving him or her with the sense that they are surrounded by zombies. She takes us down to the level of the individual neuron, exploring the response of brain cells to social events. Perhaps most important, she connects neuroscience, psychiatry, and sociology as never before, showing how our daily interaction creates an organized social world--a network of brains that generates meaningful behavior and thought. Our emotions and our sense of self have no existence outside of a social context. Brothers conducts her argument with grace and style. By broadening our approach to the brain, this groundbreaking book makes an important contribution to our understanding of the human mind. (shrink)

In this issue of the American Journal of Bioethics, Kraft and colleagues (2018) provide important insights into the role trust plays in donor's decisions to contribute data and samples to local bio...

BackgroundSystems medicine is the name for an assemblage of scientific strategies and practices that include bioinformatics approaches to human biology ; “big data” statistical analysis; and medical informatics tools. Whereas personalized and precision medicine involve similar analytical methods applied to genomic and medical record data, systems medicine draws on these as well as other sources of data. Given this distinction, the clinical translation of systems medicine poses a number of important ethical and epistemological challenges for researchers working to generate systems (...) medicine knowledge and clinicians working to apply it.DiscussionThis article focuses on three key challenges: First, we will discuss the conflicts in decision-making that can arise when healthcare providers committed to principles of experimental medicine or evidence-based medicine encounter individualized recommendations derived from computer algorithms. We will explore in particular whether controlled experiments, such as comparative effectiveness trials, should mediate the translation of systems medicine, or if instead individualized findings generated through “big data” approaches can be applied directly in clinical decision-making. Second, we will examine the case of the Riyadh Intensive Care Program Mortality Prediction Algorithm, pejoratively referred to as the “death computer,” to demonstrate the ethical challenges that can arise when big-data-driven scoring systems are applied in clinical contexts. We argue that the uncritical use of predictive clinical algorithms, including those envisioned for systems medicine, challenge basic understandings of the doctor-patient relationship. Third, we will build on the recent discourse on secondary findings in genomics and imaging to draw attention to the important implications of secondary findings derived from the joint analysis of data from diverse sources, including data recorded by patients in an attempt to realize their “quantified self.”SummaryThis paper examines possible ethical challenges that are likely to be raised as systems medicine to be translated into clinical medicine. These include the epistemological challenges for clinical decision-making, the use of scoring systems optimized by big data techniques and the risk that incidental and secondary findings will significantly increase. While some ethical implications remain still hypothetical we should use the opportunity to prospectively identify challenges to avoid making foreseeable mistakes when systems medicine inevitably arrives in routine care. (shrink)

This article provides practical guidance for researchers who wish to enroll and collect data from pediatric research participants through online and mobile platforms, with a focus on the involvement of both children and their parents in the decision to participate.

Provider claims to conscientious objection have generated a great deal of heated debate in recent years. However, the conflicts that arise when providers make claims to the "conscience" are only a subset of the more fundamental challenges that arise in health care practice when patients and providers come into conflict. In this piece, the author provides an account of patient-provider conflict from within the moral tradition of St. Thomas Aquinas. He argues that the practice of health care providers should be (...) understood as a form of practical reasoning and that this practical reasoning must necessarily incorporate both "moral" and "professional" commitments. In order to understand how the practical reasoning of provider should account for the needs and commitments of the patient and vice versa, he explores the account of dependence provided by Alasdair MacIntyre in his book Dependent Rational Animals. MacIntyre argues that St. Thomas’ account of practical reasoning should be extended and adapted to account for the embodied vulnerability of all humans. In light of this insight, providers must view patients not only as the subjects of their moral reflection but also as fellow humans upon whom the provider depends for feedback on the effectiveness and relevance of her practical reasoning. The author argues that this account precludes responsive providers from adopting either moral or professional conclusions on the appropriateness of interventions outside the individual circumstances that arise in particular situations. The adoption of this orientation toward patients will neither eradicate provider-patient conflict nor compel providers to perform interventions to which they object. But this account does require that providers attend meaningfully to the suffering of patients and seek feedback on whether their intervention has effectively addressed that suffering. (shrink)

In the twentieth century the question of the relationship of Terence's Heautontimorumenos to its Greek original has been largely neglected or else dismissed on the grounds that it presents no major problem. It is true that, because of the new light which the discovery of the Cairo codex of Menander shed on the nature and role of the chorus in Greek new comedy, there was a flurry of activity concerning the difficult passage 167 ff.; but the far more fundamental problem (...) of contaminatio in general and of the meaning and interpretation of lines 4 to 6 of the play's prologue has attracted comparatively little attention. H. Marti produced a two-part survey of work done on Terence in the years 1909 to 1959; in it he says that in the period under review the question of contaminatio in Heauton–in the sense of the fusion of two originals –has been totally abandoned, with the exception of one article by F. Skutsch in which he holds to his earlier views on the subject. Marti also refers to Kohler's earlier work on the same problem, and to the discussion to be found in Kuiper's more comprehensive work on Roman comedy, but that is all. (shrink)

THE closing lines of Act I, Scene n of Terence's Eunuchus pose certain difficulties; in particular it is far from clear when Phaedria and Parmeno leave the stage-if indeed they do so at all. Taking this small difficulty as a starting-point, I wish to examine the text of Eunuchus at this place in order to see what information can be gained about the structure of the play and about any alterations Terence may have made in adapting his Greek original. In (...) this I shall mainly be confining myself to Terence's adaptation of Menander's Eunuchus at this one point, and shall not re-examine the welltrodden ground concerning the introduction of the parasite and the boastful Captain from Menander's Colax. (shrink)

There is a growing consensus that results generated through multiplex genetic tests, even those produced as a part of research, should be reported to providers and patients when they are considered “actionable,” that is, when they could be used to inform some potentially beneficial clinical action. However, there remains controversy over the precise criterion that should be used in identifying when a result meets this standard. In this paper, we seek to refine the concept of “actionability” by exploring one proposed (...) use for genetic test results. We argue that genetic test results indicating that a patient is at risk for developing a chronic health condition should not be considered actionable if the only potential value of that result is to motivate patients to make changes in their health behaviors. Since the empirical research currently available on this question is equivocal, we explore relevant psychological theories of human motivation to demonstrate that current theory does not support the assumption that information about genetic risk will be motivating to most patients in their attempts to make changes in health behaviors. (shrink)

This paper examines the historical rise of both cardiopulmonary resuscitation and the do-not-resuscitate order and the wisdom of their continuing status in U.S. hospital practice and policy. The practice of universal presumed consent to CPR and the resulting DNR policy are the products of a particular time and were responses to particular problems. In order to keep the excesses of technology in check, the DNR policies emerged as a response to the in-hospital universal presumed consent to CPR. We live with (...) this historical concretion, which seems to perpetuate a false culture that the patient's wishes must be followed. The authors are critical of the current U.S. climate, where CPR and DNR are viewed as two among a panoply of patient choices, and point to UK practice as an alternative. They conclude that physicians in the United States should radically rethink approaches to CPR and DNR. (shrink)

The COVID-19 pandemic has resulted in widespread disruption of the typical way of doing things. In nearly every industry, responses to the pandemic have brought about departures from standard opera...

Since trauma is a thoroughly relational phenomenon, it is highly unpredictable, and cannot be made to fit within the scientific framework Freud so admired. In _Toward a Psychology of Uncertainty: Trauma-Centered Psychoanalysis,_ Doris Brothers urges a return to a trauma-centered psychoanalysis. Making use of relational systems theory, she shows that experiences of uncertainty are continually transformed by the regulatory processes of everyday life such as feeling, knowing, forming categories, making decisions, using language, creating narratives, sensing time, remembering, forgetting, and fantasizing. (...) Insofar as trauma destroys the certainties that organize psychological life, it plunges our relational systems into chaos and sets the stage for the emergence of rigid, life-constricting relational patterns. These trauma-generated patterns, which often involve denial of sameness and difference, the creation of complexity-reducing dualities, and the transformation of certainty into certitude, figure prominently in virtually all of the complaints for which patients seek analytic treatment. Analysts, she claims, are no more strangers to trauma than are their patients. Using in-depth clinical illustrations, Dr. Brothers demonstrates how a mutual desire to heal and to be healed from trauma draws patients and analysts into their analytic relationships. She recommends the reconceptualization of what has heretofore been considered transference and countertransference in terms of the transformation of experienced uncertainty. In her view the increased ability of both analytic partners to live with uncertainty is the mark of a successful treatment. Dr. Brothers’ perspective sheds fresh light on a variety of topics of great general interest to analysts as well as many of their patients, such as gender, the acceptance of death, faith, cult-like training programs, and burnout. Her discussions of these topics are enlivened by references to contemporary cinema and theatre. (shrink)

Logical problems inherent in claims that biological neuroscience can ultimately explain mind are not anomalous: They result from underlying social interests. Neuroscientists are currently making a successful bid to fill a vacuum of authority created by the demise of Freudian theory in popular culture. The conflations described in the Gold & Stoljar target article are the result of alliances between certain apologist-philosophers, neuroscientists, and institutions, for the purpose of commanding authority and resources. Social analysis has a role to play in (...) addressing logical issues in the philosophy of neuroscience. (shrink)

Der Aufsatz analysiert den Konnex zwischen Individualisierter Medizin und der Forderung nach mehr gesundheitlicher Eigenverantwortung, der oft als plausibel angenommen wird, wenn der Individualisierten Medizin das Potential zugesprochen wird, das solidarisch finanzierte Gesundheitssystem in Deutschland zu transformieren. Ausgehend von einer logischen Rekonstruktion des Verantwortungsbegriffs, die dessen Operationalisierbarkeit unter anderem an Sanktionsvollmachten der jeweiligen Verantwortungsinstanz bindet, und basierend auf einem terminologisch präzisierten Verständnis von Individualisierter Medizin wird folgende These entwickelt: Die Annahme, im Rahmen Individualisierter Medizin sei eine verlässliche Prädiktion anlagebedingter und (...) zugleich lebensstilabhängiger Erkrankungsrisiken möglich, verpflichtet logisch nicht zur Übernahme der Forderung, Lebensstile mit negativem Einfluss auf persönliche Erkrankungsrisiken seien zu sanktionieren. Weil die Forderung nach mehr gesundheitlicher Eigenverantwortung aus dem Programm der Individualisierten Medizin logisch nicht ohne Hinzunahme normativer Prinzipien abzuleiten ist, kann man dieses Programm selbst gut heißen, ohne sich die politische Forderung nach einem Umbau des solidarisch finanzierten Gesundheitssystems unter dem Vorzeichen gesundheitlicher Eigenverantwortung zu eigen machen zu müssen. (shrink)

ZusammenfassungDer Aufsatz analysiert den Konnex zwischen Individualisierter Medizin und der Forderung nach mehr gesundheitlicher Eigenverantwortung, der oft als plausibel angenommen wird, wenn der Individualisierten Medizin das Potential zugesprochen wird, das solidarisch finanzierte Gesundheitssystem in Deutschland zu transformieren. Ausgehend von einer logischen Rekonstruktion des Verantwortungsbegriffs, die dessen Operationalisierbarkeit unter anderem an Sanktionsvollmachten der jeweiligen Verantwortungsinstanz bindet, und basierend auf einem terminologisch präzisierten Verständnis von Individualisierter Medizin wird folgende These entwickelt: Die Annahme, im Rahmen Individualisierter Medizin sei eine verlässliche Prädiktion anlagebedingter und (...) zugleich lebensstilabhängiger Erkrankungsrisiken möglich, verpflichtet logisch nicht zur Übernahme der Forderung, Lebensstile mit negativem Einfluss auf persönliche Erkrankungsrisiken seien zu sanktionieren. Weil die Forderung nach mehr gesundheitlicher Eigenverantwortung aus dem Programm der Individualisierten Medizin logisch nicht ohne Hinzunahme normativer Prinzipien abzuleiten ist, kann man dieses Programm selbst gut heißen, ohne sich die politische Forderung nach einem Umbau des solidarisch finanzierten Gesundheitssystems unter dem Vorzeichen gesundheitlicher Eigenverantwortung zu eigen machen zu müssen. (shrink)

ZusammenfassungDer Aufsatz analysiert den Konnex zwischen Individualisierter Medizin und der Forderung nach mehr gesundheitlicher Eigenverantwortung, der oft als plausibel angenommen wird, wenn der Individualisierten Medizin das Potential zugesprochen wird, das solidarisch finanzierte Gesundheitssystem in Deutschland zu transformieren. Ausgehend von einer logischen Rekonstruktion des Verantwortungsbegriffs, die dessen Operationalisierbarkeit unter anderem an Sanktionsvollmachten der jeweiligen Verantwortungsinstanz bindet, und basierend auf einem terminologisch präzisierten Verständnis von Individualisierter Medizin wird folgende These entwickelt: Die Annahme, im Rahmen Individualisierter Medizin sei eine verlässliche Prädiktion anlagebedingter und (...) zugleich lebensstilabhängiger Erkrankungsrisiken möglich, verpflichtet logisch nicht zur Übernahme der Forderung, Lebensstile mit negativem Einfluss auf persönliche Erkrankungsrisiken seien zu sanktionieren. Weil die Forderung nach mehr gesundheitlicher Eigenverantwortung aus dem Programm der Individualisierten Medizin logisch nicht ohne Hinzunahme normativer Prinzipien abzuleiten ist, kann man dieses Programm selbst gut heißen, ohne sich die politische Forderung nach einem Umbau des solidarisch finanzierten Gesundheitssystems unter dem Vorzeichen gesundheitlicher Eigenverantwortung zu eigen machen zu müssen. (shrink)

As infancy is characterized by rapid physical growth and critical periods of development, disruptions due to illness or disease reveal vulnerability associated with this period. Spinal cord injury has devastating consequences at any age, but its onset neonatally, at birth, or within the first year of life multiplies its impact. The immediate physical and physiological consequences are obvious and immense, but the effects on the typical trajectory of development are profound. Activity-based restorative therapies capitalize on activity-dependent plasticity of the neuromuscular (...) system below the lesion and when provided to children with SCI aim to improve the child’s neuromuscular capacity, health and quality of life. This is a report of an infant with a cervical SCI at birth resulting in paralysis of leg and trunk muscles and paresis of arm and hands who was enrolled in an ABRT program at 3 years of age. After 59 sessions of ABRT, the child demonstrated significant improvements in trunk control and arm function, as well as social and emotional development. Despite the chronicity of injury and low expectations for improvement with therapeutic interventions, ABRT had a positive impact on the child’s physical capacity and provided benefits across multiple developmental domains. (shrink)

Current debates surrounding liberalism and communitarianism, modernity and postmodernity, ethical theory and narrative ethics fail to account for shifting foundations of personal identity in an increasingly computer‐mediated era of human communication. This paper aims to examine some of the conceptual assumptions about identity and community which are being radically undermined by rapidly evolving information networks and are therefore in need of redefinition. Additionally, I argue for an expansion of the literary imagination to include virtual, coauthored fiction sites where exploration of (...) personal identity will bear upon future ethical and political decision‐making. (shrink)