In cognitive science, there is a tacit norm that phenomena such as cultural variation or synaesthesia are worthy examples of cognitive diversity that contribute to a better understanding of cognition, but that other forms of cognitive diversity (e.g., autism, attention deficit hyperactivity disorder/ADHD, and dyslexia) are primarily interesting only as examples of deficit, dysfunction, or impairment. This status quo is dehumanizing and holds back much-needed research. In contrast, the neurodiversity paradigm argues that such experiences are not necessarily deficits but rather (...) are natural reflections of biodiversity. Here, we propose that neurodiversity is an important topic for future research in cognitive science. We discuss why cognitive science has thus far failed to engage with neurodiversity, why this gap presents both ethical and scientific challenges for the field, and, crucially, why cognitive science will produce better theories of human cognition if the field engages with neurodiversity in the same way that it values other forms of cognitive diversity. Doing so will not only empower marginalized researchers but will also present an opportunity for cognitive science to benefit from the unique contributions of neurodivergent researchers and communities. (shrink)

Volume 20, Issue 5, June 2020, Page 72-74.

BackgroundThe emergence of artificial intelligence (AI) in medicine has prompted the development of numerous ethical guidelines, while the involvement of patients in the creation of these documents lags behind. As part of the European PROFID project we explore patient perspectives on the ethical implications of AI in care for patients at increased risk of sudden cardiac death (SCD).AimExplore perspectives of patients on the ethical use of AI, particularly in clinical decision-making regarding the implantation of an implantable cardioverter-defibrillator (ICD).MethodsSemi-structured, future scenario-based (...) interviews were conducted among patients who had either an ICD and/or a heart condition with increased risk of SCD in Germany (n = 9) and the Netherlands (n = 15). We used the principles of the European Commission’s Ethics Guidelines for Trustworthy AI to structure the interviews.ResultsSix themes arose from the interviews: the ability of AI to rectify human doctors’ limitations; the objectivity of data; whether AI can serve as second opinion; AI explainability and patient trust; the importance of the ‘human touch’; and the personalization of care. Overall, our results reveal a strong desire among patients for more personalized and patient-centered care in the context of ICD implantation. Participants in our study express significant concerns about the further loss of the ‘human touch’ in healthcare when AI is introduced in clinical settings. They believe that this aspect of care is currently inadequately recognized in clinical practice. Participants attribute to doctors the responsibility of evaluating AI recommendations for clinical relevance and aligning them with patients’ individual contexts and values, in consultation with the patient.ConclusionThe ‘human touch’ patients exclusively ascribe to human medical practitioners extends beyond sympathy and kindness, and has clinical relevance in medical decision-making. Because this cannot be replaced by AI, we suggest that normative research into the ‘right to a human doctor’ is needed. Furthermore, policies on patient-centered AI integration in clinical practice should encompass the ethics of everyday practice rather than only principle-based ethics. We suggest that an empirical ethics approach grounded in ethnographic research is exceptionally well-suited to pave the way forward. (shrink)

BackgroundThe proper and ethical inclusion of PWLHIV and their young children in research is paramount to ensure valid evidence is generated to optimize treatment and care. Little empirical data exists to inform ethical considerations deemed most critical to these populations. Our study aimed to systematically review the empiric literature regarding ethical considerations for research participation of PWLHIV and their young children.MethodsWe conducted this systematic review in partnership with a medical librarian. A search strategy was designed and performed within the following (...) electronic databases: Ovid MEDLINE, Embase and CINAHL. We screened titles and abstracts using the following inclusion criteria: (1) a study population of PWLHIV or children under 5 years of age; and (2) collection of qualitative or quantitative data regarding ethics of research participation. Excluded were reviews, commentaries, policy statements, clinical care-related ethics concerns, abstracts, case studies, or studies unrelated to HIV research. Studies were appraised for quality, data were extracted, and studies were qualitatively analyzed using a principle-based ethical framework within the Belmont Report.ResultsOf the 7470 titles identified, 538 full-text articles were reviewed for eligibility and only three articles met full criteria for inclusion within this review. While we allowed for inclusion of studies involving young children born to mothers with HIV, only articles focused on PWLHIV were identified. Within the results of these studies, four themes emerged: (1) adequacy of informed consent; (2) consideration of paternal involvement; (3) balancing risks; and (4) access to research and treatment. A strength of this review is that it included perspectives of international research investigators, community leaders, and male partners. However, only two studies collected empiric data from PWLHIV regarding their experiences participating in researchConclusionResearchers and funding agencies should be aware of these considerations and appreciate the value of and critical need for formative research to ensure clinical trials involving PWLHIV promote ethical, well-informed research participation and, ultimately, improve care outcomes. More research is needed to create a comprehensive ethical framework for researchers when conducting studies with PWLHIV. (shrink)

Anthony Giddens’ theory of structuration is a theory of social action, which claims that society should be understood in terms of action and structure; a duality rather than two separate entities. This paper introduces some of the central characteristics of structuration theory, presenting a conceptual framework that helps to explore how people produce the systems and structures that shape their practice. By understanding how people produce and reproduce structures, then there is the potential for changing them. Criticisms that have been (...) raised about the theory are introduced, followed by examples of how the theory might be useful to nursing research. Structuration theory can be employed to explore how nurses produce, reproduce, and transform nursing practice through social interaction across time and space. (shrink)

Patients who enter the health care system for acute care may become “permanent” patients of the hospital when a lack of resources precludes discharge to the next level of post-acute care. Legal, professional, and ethical norms prohibit physician and acute care hospital “dumping” of these patients. However, limitless use of hospital resources for indefinite stays is untenable. In the absence of hospital policy addressing this specific issue, the availability of financial support will be determined by health care professionals' willingness to (...) advocate for the patient and negotiate with hospital administrators and the ability and willingness of administrators to authorize the use of hospital resources. We propose five mid-level ethical principles to guide advocacy and administrative decision-making about provision of financial support for post-acute care for those patients who cannot afford it. We use two actual, de-identified cases to illustrate how these principles can be used to make reasoned, consistent decisions about the provision of post-acute financial support. (shrink)

Patients who enter the health care system for acute care may become “permanent” patients of the hospital when a lack of resources precludes discharge to the next level of post-acute care. The care of these patients contributes to the rising costs of health care and will remain largely unaffected by the Affordable Care Act. For example, some resources may be available for treatment of undocumented persons, but Medicaid enrollment is unavailable for this population. Even where patients have access to Medicaid, (...) it takes up to three months between applying for and actually receiving Medicaid benefits. During that time, patients may be ready for hospital discharge. However, post-acute care facilities have no financial incentive or legal obligation to accept patients with no insurance or only pending Medicaid coverage. (shrink)

While valuable work has been done addressing clinical ethics within established healthcare systems, we anticipate that the projected growth in acquisitions of community hospitals and facilities by large tertiary hospitals will impact the field of clinical ethics and the day-to-day responsibilities of clinical ethicists in ways that have yet to be explored. Toward the goal of providing clinical ethicists guidance on a range of issues that they may encounter in the systematization process, we discuss key considerations and potential challenges in (...) implementing system-wide ethics consultation services. Specifically, we identify four models for organizing, developing, and enhancing ethics consultation activities within a system created through acquisitions: train-the-trainer, local capacity-building, circuit-riding, and consolidated accountability. We note each model’s benefits and challenges. To our knowledge, this is the first paper to consider the broader landscape of issues affected by consolidation. We anticipate that clinical ethicists, volunteer consultants, and hospital administrators will benefit from our recommendations. (shrink)

In their article “Structuring a Written Examination to Assess ASBH Health Care Ethics Consultation Core Competencies” (2014), White, Jankowski, and Shelton argue that a written examination to evalu...

The clinical ethicist met with Ms. H to clarify what information she wants and does not want to know. First, she wants to receive any treatment that could prolong her life, regardless of how the treatment affects her ability to engage in activities of daily living. Second, she wants to be included in the decision‐making process as much as possible, as long as clinicians use only “positive” language. Ms. H considers the words “dying,” “chemotherapy,” “radiation,” and “cancer” to be “bad (...) words.” For conversations in which these words cannot be avoided, she wants her clinicians to talk to her son. Her desired engagement includes hearing about risks, benefits, and alternatives to treatments if clinicians use only “positive” language. Finally, she says that she rarely sees doctors and that she is “very scared” of hospitals, despite exhibiting a comfortable demeanor.Should clinicians honor Ms. H's waiver of specified information and, if so, to what degree? (shrink)

Background In the context of limited health care budgets in countries where Neglected Tropical Diseases are endemic, scaling up disease control interventions entails the setting of priorities. However, solutions based solely on cost-effectiveness analyses may lead to biased and insufficiently justified priorities. Objectives The objectives of this paper are to 1) demonstrate how a range of equity concerns can be used to identify feasible priority setting criteria, 2) show how these criteria can be fed into a multi-criteria decision-making matrix, and (...) 3) discuss the conditions under which this decision-making procedure should be carried out in a real-world decision-making context. Methods This paper draws on elements from theories of decision analysis and ethical theories of fair resource allocation. We explore six typical NTD interventions by employing a modified multi-criteria decision analysis model with predefined criteria, drawn from a priority setting guide under development by the WHO. To identify relevant evidence for the six chosen interventions, we searched the PubMed and Cochrane databases. Discussion Our in vitro multi-criteria decision analysis suggested that case management for visceral leishmaniasis should be given a higher priority than mass campaigns to prevent soil-transmitted helminthic infections. This seems to contradict current health care priorities and recommendations in the literature. We also consider procedural conditions that should be met in a contextualised decision-making process and we stress the limitations of this study exercise. Conclusion By exploring how several criteria relevant to the multi-facetted characteristics of NTDs can be taken into account simultaneously, we are able to suggest how improved priority settings among NTDs can be realised. (shrink)

Hospital administrators may lack familiarity with what clinical ethicists do (and do not do), and many clinical ethicists report receiving inadequate financial support for their clinical ethics consultation services (CECSs). Ethics consultation is distinct in that it is not reimbursable by third parties, and its financial benefit to the hospital may not be quantifiable. These peculiarities make it difficult for clinical ethicists to resort to tried-and-true outcome-centered evaluative strategies, like cost reduction or shortened length of stay for patients, to show (...) a “need” for ethics consultation. Likewise, it can be difficult for clinical ethicists to “speak the same language” as healthcare administrators and managers, which, in turn, means that CECSs run the risk of being unable to demonstrate value to those who pay for the service. The purpose of this descriptive article is to provide practical guidance to clinical ethicists and program directors on how to cultivate administrative support for a CECS. Specifically, we discuss two elements that clinical ethics leaders must critically appraise and successfully argue to meet the expectations of administrators— the value of a CECS and its fit in clinical workflow. (shrink)

The Logic of Human Personality shows how the ancient definition of person remains useful today, and explains how it happened to fall into disuse. The method of using the categories of Aristotle is illustrated by showing how action, relation, and time as well as the fundamental category of substance, can help us understand what it is to be a person. The Logic of Human Personality agrues, against Mill and others who have found Aristotle's categories unsatisfactory, that in fact they are (...) useful for much psychological and anthropological research today, particularly in the intercultural field. (shrink)

Background:Clinical investigation is a growing field employing increasing numbers of nurses. This has created a new specialty practice defined by aspects unique to nursing in a clinical research context: the objectives, setting, and nature of the nurse–participant relationship. The clinical research nurse role may give rise to feelings of ethical conflict between aspects of protocol implementation and the duty of patient advocacy, a primary nursing responsibility. Little is known about whether research nurses experience unique ethical challenges distinct from those experienced (...) by nurses in traditional patient-care settings.Research objectives:The purpose of the study was to describe the nature of ethical challenges experienced by clinical research nurses within the context of their practice.Research design:The study utilized a qualitative descriptive design with individual interviews.Participants and research context:Participating nurses self-identified as having experienced ethical challenges during screening. The majority were Caucasian, female, and worked in outpatient settings. Approximately 50% had > 10 years of research experience.Ethical considerations:The human subjects review board approved the study. Written informed consent was obtained.Findings:Predominant themes were revealed: the inability to provide a probable good, or/do no harm, and dual obligations. The following patterns and subthemes emerged: conflicted allegiances between protocol implementation, needs of the participant, desire to advance science, and tension between the nurse–patient therapeutic relationship versus the research relationship.Discussion:Participants described ethical challenges specific to the research role. The issues are central to the nurse–participant relationship, patient advocacy, the nurse’s role in implementing protocols, and/or advancing science.Conclusion:Ethical challenges related to the specialized role of clinical research nurses were identified. More research is warranted to fully understand their nature and frequency and to identify support systems for resolution. (shrink)

Critical congenital heart disease screening is rapidly becoming the standard of care in the United States after being added to the Recommended Uniform Screening Panel in 2011. Newborn screens typically do not require affirmative parental consent. In fact, most states allow parents to exempt their baby from receiving the required screen on the basis of religious or personally held beliefs. There are many ethical considerations implicated with allowing parents to exempt their child from newborn screening for CCHD. Considerations include the (...) treatment of religious exemptions in our current legal system, as well as medical and ethical principles in relation to the rights of infants. Although there are significant benefits to screening newborns for CCHD, when a parent refuses for religious or personal beliefs, in the case of CCHD screening, the parental decision should stand. (shrink)

This study examined the relationship between moral distress intensity, moral distress frequency and the ethical work environment, and explored the relationship of demographic characteristics to moral distress intensity and frequency. A group of 106 nurses from two large medical centers reported moderate levels of moral distress intensity, low levels of moral distress frequency, and a moderately positive ethical work environment. Moral distress intensity and ethical work environment were correlated with moral distress frequency. Age was negatively correlated with moral distress intensity, (...) whereas being African American was related to higher levels of moral distress intensity. The ethical work environment predicted moral distress intensity. These results reveal a difference between moral distress intensity and frequency and the importance of the environment to moral distress intensity. (shrink)

While researchers have examined the types of ethical issues that arise in long-term care, few studies have explored long-term care nurses’ experiences of moral distress and fewer still have examined responses to initial moral distress. Using an interpretive description approach, 15 nurses working in long-term care settings within one city in Canada were interviewed about their responses to experiences of initial moral distress, resources or supports they identified as helpful or potentially helpful in dealing with these situations, and factors that (...) hindered nurses in their responses. Using a thematic analysis process, three major themes were identified from the nurses’ experiences: (i) the context of the situation matters; (ii) the value of coming together as a team; and (iii) looking for outside direction. The work of responding to initial moral distress was more fruitful if opportunities existed to discuss conflicts with other team members and if managers supported nurses in moving their concerns forward through meetings or conversations with the team, physician, or family. Access to objective others and opportunities for education about ethics were also identified as important for dealing with value conflicts. (shrink)

We report the identification of a recurrent, 520-kb 16p12.1 microdeletion associated with childhood developmental delay. The microdeletion was detected in 20 of 11,873 cases compared with 2 of 8,540 controls and replicated in a second series of 22 of 9,254 cases compared with 6 of 6,299 controls. Most deletions were inherited, with carrier parents likely to manifest neuropsychiatric phenotypes compared to non-carrier parents. Probands were more likely to carry an additional large copy-number variant when compared to matched controls. The clinical (...) features of individuals with two mutations were distinct from and/or more severe than those of individuals carrying only the co-occurring mutation. Our data support a two-hit model in which the 16p12.1 microdeletion both predisposes to neuropsychiatric phenotypes as a single event and exacerbates neurodevelopmental phenotypes in association with other large deletions or duplications. Analysis of other microdeletions with variable expressivity indicates that this two-hit model might be more generally applicable to neuropsychiatric disease. © 2010 Nature America, Inc. All rights reserved. (shrink)

AimWhite matter changes in individuals at ultra-high risk for psychosis (UHR) may be involved in the transition to psychosis. Sleep-wake disturbances commonly precede the first psychotic episode and predict development of psychosis. We examined associations between white matter microstructure and sleep-wake disturbances in UHR individuals compared to healthy controls (HC), as well as explored the confounding effect of medication, substance use, and level of psychopathology.MethodsSixty-four UHR individuals and 35 HC underwent clinical interviews and diffusion weighted imaging. Group differences on global (...) and callosal mean fractional anisotropy (FA) was tested using general linear modeling. Sleep-wake disturbances were evaluated using the subjective measures disturbed sleep index (DSI) and disturbed awakening index (AWI) from the Karolinska Sleep Questionnaire, supported by objective sleep measures from one-night actigraphy. The primary analyses comprised partial correlation analyses between global FA/callosal FA and sleep-wake measures. Secondary analyses investigated multivariate patterns of covariance between measures of sleep-wake disturbances and FA in 48 white matter regions of interest using partial least square correlations.ResultsUltra-high risk for psychosis individuals displayed lower global FA (F = 14.56, p < 0.001) and lower callosal FA (F = 11.34, p = 0.001) compared to HC. Subjective sleep-wake disturbances were significantly higher among the UHR individuals (DSI: F = 27.59, p < 0.001, AWI: F = 36.42, p < 0.001). Lower callosal FA was correlated with increased wake after sleep onset (r = −0.34, p = 0.011) and increased sleep fragmentation index (r = −0.31, p = 0.019) in UHR individuals. Multivariate analyses identified a pattern of covariance in regional FA which were associated with DSI and AWI in UHR individuals (p = 0.028), but not in HC. Substance use, sleep medication and antipsychotic medication did not significantly confound these associations. The association with objective sleep-wake measures was sustained when controlling for level of depressive and UHR symptoms, but symptom level confounded the covariation between FA and subjective sleep-wake measures in the multivariate analyses.ConclusionCompromised callosal microstructure in UHR individuals was related to objectively observed disruptions in sleep-wake functioning. Lower FA in ventrally located regions was associated with subjectively measured sleep-wake disturbances and was partly explained by psychopathology. These findings call for further investigation of sleep disturbances as a potential treatment target. (shrink)

Retaliation against whistleblowers is a well-recognized problem, yet there is little explanation for why uninvolved peers choose to retaliate through ostracism. We conduct two experiments in which participants take the role of a peer third-party observer of theft and subsequent whistleblowing. We manipulate injunctive norms and descriptive norms. Both experiments support the core of our theoretical model, based on social intuitionist theory, such that moral judgments of the acts of wrongdoing and whistleblowing influence the perceived likeability of each actor and (...) ultimately influence intention to ostracize each actor and indicate more willingness to ostracize the whistleblower than the wrongdoer. When we vary norms for the wrongdoing in Experiment 1, we find that descriptive and injunctive norms indirectly influence intentions to ostracize both the wrongdoer and whistleblower. These relationships are serially mediated by the observers’ moral judgments of the act and likeability of the actor. When we vary norms for whistleblowing in Experiment 2, the injunctive norm manipulation affected moral judgment of the action of whistleblowing, and we do not observe any other significant effects of the norm manipulations on moral judgments of the actions of wrongdoing or whistleblowing. (shrink)

Biology and history are often viewed as closely related disciplines, with biology informed by history, especially in its task of charting our evolutionary past. Maximizing the opportunities for cross-fertilization in these two fields requires an accurate reckoning of their commonalities and differences-precisely what this volume sets out to achieve. Specially commissioned essays by a team of recognized international researchers cover the full panoply of topics in these fields and include notable contributions on the correlativity of evolutionary and historical explanations, applying (...) to history the latest causal-mechanical approach in the philosophy of biology, and the question of generalized laws that might pertain across the two subjects. The collection opens with a vital interrogation of general issues on explanation that apart from potentially fruitful areas of interaction (could the etiology of the causal-mechanical perspective in biology account for the historical trajectory of the Roman Empire?) this volume also seeks to chart relative certainties distinguishing explanations in biology and history. It also assesses techniques such as the use of probabilities in biological reconstruction, deployed to overcome the inevitable gaps in physical evidence on early evolution. Methodologies such as causal graphs and semantic explanation receive in-depth analysis. Contributions from a host of prominent and widely read philosophers ensure that this new volume has the stature of a major addition to the literature. (shrink)

In the surviving plays of Aeschylus and Sophocles the gods appear to men only rarely. In the Eumenides Apollo and Athena intervene to bring acquittal to Orestes. In Sophocles' Philoctetes Heracles appears ex machina to ensure that the hero returns to Troy, and we learn from a messenger how the gods have summoned the aged Oedipus to a hero's tomb. In Sophocles' Ajax Athena drives Ajax mad and taunts him cruelly. Prometheus Bound might seem to be an exception, since all (...) but one of its characters are gods. But nonetheless the intervention of the gods in the life of the one human character, Io, brings pain and trouble as well as promise of benefit. Io has been driven mad because she has refused to obey the dreams that tell her to go to the meadow where Zeus wants to have intercourse with her. The god does not make his request in person, and it is only in the course of her wanderings that Io learns how Zeus will bring a gentle end to her sufferings. Her informant is another god, Zeus' adversary Prometheus, who answers her questions, at times grudgingly , and in ways that are not immediately clear to her. (shrink)

This collection of essays—the first of its kind in English—brings together the work of an international group of scholars examining the entire tradition associated with the ancient Cynics. The essays give a history of the movement as well as a state-of-the-art account of the literary, philosophical and cultural significance of Cynicism from antiquity to the present. Arguably the most original and influential branch of the Socratic tradition, Cynicism has become the focus of renewed scholarly interest in recent years, thanks to (...) the work of Sloterdijk, Foucault, and Bakhtin, among others. The contributors to this volume—classicists, comparatists, and philosophers—draw on a variety of methodologies to explore the ethical, social and cultural practices inspired by the Cynics. The volume also includes an introduction, appendices, and an annotated bibliography, making it a valuable resource for a broad audience. (shrink)

Although clinical ethics consultation is a high-stakes endeavor with an increasing prominence in health care systems, progress in developing standards for quality is challenging. In this article, we describe the results of a pilot project utilizing portfolios as an evaluation tool. We found that this approach is feasible and resulted in a reasonably wide distribution of scores among the 23 submitted portfolios that we evaluated. We discuss limitations and implications of these results, and suggest that this is a significant step (...) on the pathway to an eventual certification process for clinical ethics consultants. (shrink)

Selected papers of the Society for Thomistic Personalism: A Word from the Editor.

Scientists of the Human Genome Project tend to rely on three metaphors to describe their work, each of which implicitly tells much the same story. Whether they claim to interpret the ultimate "book," to fix a flawed "machine," or to map a mysterious "wilderness," they invariably cast the researcher as one who dominates and exploits the Other. This essay, which explores the ways such a story conflicts with feminist values, proposes an alternative.

Clinical experience suggests that adult survivors of childhood trauma arrive at their memories in a number of ways, with varying degrees of associated distress and uncertainty and, in some cases, after memory lapses of varying duration and extent. Among those patients who enter psychotherapy as a result of early abuse, three general patterns of traumatic recall are identified: relatively continuous and complete recall of childhood abuse experiences coupled with changing interpretations of these experiences, partial amnesia for abuse events, accompanied by (...) a mixture of delayed recall and delayed understanding, and delayed recall following a period of profound and pervasive amnesia. These patterns are represented by three composite clinical vignettes. Variations among them suggest that the phenomena underlying traumatic recall are continuous not dichotomous. Future research into the nature of traumatic memory should be informed by clinical observation. (shrink)