Genomics research is regularly appropriated in social and political contexts to publicly legitimize unjust and malicious political views, policies, and actions. In recent years, there have been high‐profile cases of mass shooters, public intellectuals, and political insiders using genomics findings to convince audiences that deadly force and coercive policies against racial minorities are warranted. To create a just genomics, geneticists must consider what makes their research so attractive and adaptable for the legitimization of unjust ends and what they can do (...) to counter such appropriations. We offer insights and recommendations drawing from our research into the many ways online white nationalist and far‐right political movements mobilize genetics research to promote their racist, sexist, antisemitic, and homophobic views. First, geneticists should identify and change routine research practices that feed eugenic thinking. Second, geneticists should adopt creative extra‐scholarly communication efforts to counter the use of their field's research that occurs in nonscholarly spaces. Third, we identify permissive epistemological and professional practices within the genetics field that have enabled such unjust appropriations to thrive, and we recommend strategies for institutional reform. (shrink)

A layoff is a threatening yet common event which employees might face at some point in their working lives. In two scenario-based experiments, we investigated which actions of a layoff agent during a dismissal notification meeting may contribute to laid-off employees’ fairness judgments and negative attitudes toward the employer. In general, the extent to which layoff victims were treated with respect was consistently found to increase perceptions of interpersonal and procedural fairness and to mitigate negative attitudes toward the employer. Further (...) results showed that layoff victims preferred to be given an adequate explanation of the reasons for the layoff and to receive notice from the direct supervisor. Relationships between the layoff agent’s actions and layoff victims’ negative attitudes toward the employer were mediated by perceptions of procedural fairness. In addition, delegating the layoff agent’s task to an external consultant increased perceived psychological contract breach. Our findings have important implications for organizational justice research and for the managerial practice of implementing fair layoffs. In particular, small actions, such as treating employees with respect, might be of benefit both to humans and organizations. (shrink)

The authors work in a variety of clinical ethics consultation services (CECSs) that employ a range of methods and approaches. This article discusses the approach to ethics consultation at the Center for Medical Ethics and Health Policy at Baylor College of Medicine and describes the development and transformation of the authors’ CECSs. It discusses how one CECS shifted from a nascent program with only fifty consultations a year to a vibrant, heavily staffed service with five hundred ethics consultations a year.

Native advertising has recently become a prominent buzzword for advertisers and publishers alike. It describes advertising formats which closely adapt their form and style to the editorial environment they appear in, intending to hide the commercial character of these ads. In two experimental studies, we test how advertising disclosures in native ads on news websites affect recipients’ attitudes towards a promoted brand in a short and long-term perspective. In addition, we explore persuasion through certain content features (i. e., message sidedness (...) and use of exemplars) and how they affect disclosure effects. Results show that disclosures increase perceived persuasive intent but do not necessarily decrease brand attitudes. However, disclosure effects do not persist over time and remain unaffected by content features. (shrink)

Recent experiments have shown that people iconically modulate their prosody corresponding with the meaning of their utterance. This article reports findings from a story reading task that expands the investigation of iconic prosody to abstract meanings in addition to concrete ones. Participants read stories that contrasted along concrete and abstract semantic dimensions of speed and size. Participants read fast stories at a faster rate than slow stories, and big stories with a lower pitch than small stories. The effect of speed (...) was distributed across the stories, including portions that were identical across stories, whereas the size effect was localized to size-related words. Overall, these findings enrich the documentation of iconicity in spoken language and bear on our understanding of the relationship between gesture and speech. (shrink)

Rare Disease research has seen tremendous advancements over the last decades, with the development of new technologies, various global collaborative efforts and improved data sharing. To maximize the impact of and to further build on these developments, there is a need for model consent clauses for rare diseases research, in order to improve data interoperability, to meet the informational needs of participants, and to ensure proper ethical and legal use of data sources and participants’ overall protection. A global Task Force (...) was set up to develop model consent clauses specific to rare diseases research, that are comprehensive, harmonized, readily accessible, and internationally applicable, facilitating the recruitment and consent of rare disease research participants around the world. Existing consent forms and notices of consent were analyzed and classified under different consent themes, which were used as background to develop the model consent clauses. The IRDiRC-GA4GH MCC Task Force met in September 2018, to discuss and design model consent clauses. Based on analyzed consent forms, they listed generic core elements and designed the following rare disease research specific core elements; Rare Disease Research Introductory Clause, Familial Participation, Audio/Visual Imaging, Collecting, storing, sharing of rare disease data, Recontact for matching, Data Linkage, Return of Results to Family Members, Incapacity/Death, and Benefits. The model consent clauses presented in this article have been drafted to highlight consent elements that bear in mind the trends in rare disease research, while providing a tool to help foster harmonization and collaborative efforts. (shrink)

In their attention to patients of different specialties, health personnel are the most vulnerable to contagion, which has been evidenced by the COVID-19 pandemic. The working conditions or factors for biosafety practices in health personnel worldwide will make it possible to detect the necessary and less treated lines of investigation, deficiencies and to draw up lines of work for their solution. It should be noted that it is estimated that 2.78 million workers die because of occupational accidents and 374 million (...) injuries caused by work are reported, thus increasing absenteeism, the risk of contracting a disease in the workplace has become more latent and 4% of the world's GDP is occupied by diseases. The objective of this study was to analyze the evidence that exists regarding the conditioning factors for the practice of biosafety in health personnel. The methodology: where a descriptive systematic review was performed with the search of databases in Scopus selected articles from 2019 - 2023 in English and Spanish languages. The results indicate that with regard to the conditioning factors of Biosafety practice, it is evident that of the 400 articles 50 mention that it is important to know how to do, 45 mention that it is important not only the training but also the equipment for these practices to be favorable, also 31 of the articles refer to that in COVID-19 period the infections among health personnel were due to the reuse of personal protective equipment. (shrink)

Mucopolysaccharidosis type I (MPS I) is a rare lysosomal storage disorder treated with bone marrow transplantation or enzyme replacement therapy with laronidase, a high-cost orphan drug. Laronidase was approved by the US Food and Drug Administration and the European Medicines Agency in 2003 and by the Brazilian National Health Surveillance Agency in 2005. Many Brazilian MPS I patients have been receiving laronidase despite the absence of a governmental policy regulating access to the drug. Epidemiological and treatment data concerning MPS I (...) are scarce. This study aims to present a demographic profile of Brazilian patients with MPS I, describe the routes of access to laronidase in Brazil, and discuss associated ethical issues relating to public funding of orphan drugs. (shrink)

In 1880, Galton carried out an investigation of imagery in a sample of distinguished men and a sample of nonscientists (adolescent male students). He concluded that scientists were either totally lacking in visual imagery or had “feeble” powers of mental imagery. This finding has been widely accepted in the secondary literature in psychology. A replication of Galton’s study with modern scientists and modern university undergraduates found no scientists totally lacking in visual imagery and very few with feeble visual imagery. Examination (...) of Galton’s published data shows that his own published data do not support his claims about deficient visual imagery in scientists. The modern data for scientists and nonscientists and the 1880 data for scientists and nonscientists are in agreement in showing that all groups report substantial imagery on recollective memory tasks such as Galton’s breakfast questionnaire. We conclude that Galton’s conclusions were an example of theory-laden interpretation of data based on the initial responses from several very salient scientists who reported little or no visual imagery on Galton’s imagery questionnaire. (shrink)

This article presents a study on the perception of students pursuing technical careers, on aspects related to the quality of virtual education during times of covid-19 pandemic. The data analyzed were obtained from surveys of 75 students of various educational levels in aspects such as quality in teaching, accessibility to virtual resources, teacher training, continuity of the curriculum, equal conditions, and the influence of policy on the quality of education in general. It was concluded that the educational process in its (...) virtual modality is acceptable from the point of view of intrinsic advantages such as flexibility and yet there is also a change of focus in the educational institution that pays attention to providing a better virtual educational process diverting attention from equally important processes such as the communication of internal and external actions to the institution. Keywords: Virtual education, challenges, pandemic, COVID-19. (shrink)

Between-subject variability in cognitive performance has been related to inter-individual differences in functional brain networks. Targeting the dorsal attention network we questioned whether resting-state functional connectivity within the DAN can predict individual performance in spatial attention tasks and whether there is short-term adaptation of DAN-FC in response to task engagement. Twenty-seven participants first underwent resting-state fMRI, they subsequently performed different tasks of spatial attention [including visual search ] and immediately afterwards received another rs-fMRI. Intra- and inter-hemispheric FC between core hubs (...) of the DAN, bilateral intraparietal sulcus and frontal eye field, was analyzed and compared between PRE and POST. Furthermore, we investigated rs-fMRI-behavior correlations between the DAN-FC in PRE/POST and task performance parameters. The absolute DAN-FC did not change from PRE to POST. However, different significant rs-fMRI-behavior correlations were revealed for intra-/inter-hemispheric connections in the PRE and POST run. The stronger the FC between left FEF and IPS before task engagement, the better was the learning effect in VS. And the faster the VS, the stronger was the FC between right FEF and IPS after task engagement. To conclude, DAN-FC relates to the individual performance in spatial attention tasks supporting the view of functional brain networks as priors for cognitive ability. Despite a high inter- and intra-individual stability of DAN-FC, the change of FC-behavior correlations after task performance possibly indicates task-related adaptation of the DAN, underlining that behavioral experiences may shape intrinsic brain activity. However, spontaneous state fluctuations of the DAN-FC over time cannot be fully ruled out as an alternative explanation. (shrink)

In "The Quest for Consciousness," Caltech neuroscientist Christof Koch explores the biological basis of consciousness.

We propose Rhythmic Relating for autism: a system of supports for friends, therapists, parents, and educators; a system which aims to augment bidirectional communication and complement existing therapeutic approaches. We begin by summarizing the developmental significance of social timing and the social-motor-synchrony challenges observed in early autism. Meta-analyses conclude the early primacy of such challenges, yet cite the lack of focused therapies. We identify core relational parameters in support of social-motor-synchrony and systematize these using the communicative musicality constructs: pulse; quality; (...) and narrative. Rhythmic Relating aims to augment the clarity, contiguity, and pulse-beat of spontaneous behavior by recruiting rhythmic supports and relatable vitality; facilitating the predictive flow and just-ahead-in-time planning needed for good-enough social timing. From here, we describe possibilities for playful therapeutic interaction, small-step co-regulation, and layered sensorimotor integration. Lastly, we include several clinical case examples demonstrating the use of Rhythmic Relating within four different therapeutic approaches. These clinical case examples are introduced here and several more are included in the Supplementary Material. A suite of pilot intervention studies is proposed to assess the efficacy of combining Rhythmic Relating with different therapeutic approaches in playful work with individuals with autism. Further experimental hypotheses are outlined, designed to clarify the significance of certain key features of the Rhythmic Relating approach. (shrink)

Is the assessment of motor milestones valid and scaled equivalently for all infants? It is not only important to understand if the way we use gross and fine motor scores are appropriate for monitoring motor milestones but also to determine if these scores are confounded by specific infant characteristics. Therefore, the aim of the study is to investigate the latent structure underlying motor milestone assessment in infancy and measurement invariance across sex, birth weight, and gestational age. For this study, the (...) birth cohort data from the United Kingdom Millennium Cohort Study was used, which includes the assessment of eight motor milestone tasks from the Denver Developmental Screening Test in 9-month-old infants, depicting early motor development of the first children of generation Z. Confirmatory factor analyses showed a better model fit for a two-factor structure compared to a one-factor structure, and multiple indicators multiple causes modeling revealed no differential item functioning related to sex, birth weight, and gestational age. The study provides support for the use of gross and fine motor scores when assessing motor milestones in infants—both boys and girls with different birth weights and of varying gestational ages. Further investigation into widely adopted assessment tools is recommended to support the use of valid composite scores in early childhood research and practice. (shrink)

With the aim of understanding current problematizations of embryonic stem cell patenting this article rehearses the history of social entitlements related to reproductive material derived from women seeking care in institutions for reproductive health in Denmark. Our interest lies in the emergence of commercial exchange of material derived from embryos. Such exchange is characterized by contestation of the status of the embryo: is it a person or a commodity? To understand the modus operandi of the exchanges, we first explore how (...) the concepts of personhood and morality, of commodity and ownership tend to be related in the ideal type of capitalist exchange. Historical context then helps us understand the contingency of exchange systems. Historically Danish women have had much less influence on the dissemination of material derived from them than they do today. However, today their entitlements have also found their limits, in particular with respect to commercial transactions. We claim that, ironically, material derived from institutionally mediated reproduction gains unprecedented personhood from confrontation with a capitalist exchange form which potentially designates it as a mere commodity. (shrink)

Dit boek bevat de uitgebreide, geannoteerde en geïllustreerde versie van de 48ste Huizinga-lezing die Marlene Dumas vrijdagavond 6 december 2019 heeft uitgesproken in de Pieterskerk in Leiden. Dumas spreekt onder meer over het onderscheid tussen de kunstenaar en diens werk, het nadeel van een titel en de naaktheid van mannen in de kunst. 0Het boek bevat tevens een interview met Marlene Dumas, een schets van het leven en werk van Johan Huizinga, de naamgever van de lezing, en een (...) korte geschiedenis van de Huizinga-lezing, die al sinds 1972 bestaat. (shrink)

In which a scientist searches for an empirical explanation for phenomenal experience, spurred by his instinctual belief that life is meaningful. What links conscious experience of pain, joy, color, and smell to bioelectrical activity in the brain? How can anything physical give rise to nonphysical, subjective, conscious states? Christof Koch has devoted much of his career to bridging the seemingly unbridgeable gap between the physics of the brain and phenomenal experience. This engaging book--part scientific overview, part memoir, part futurist (...) speculation--describes Koch's search for an empirical explanation for consciousness. Koch recounts not only the birth of the modern science of consciousness but also the subterranean motivation for his quest--his instinctual belief that life is meaningful. Koch describes his own groundbreaking work with Francis Crick in the 1990s and 2000s and the gradual emergence of consciousness as a legitimate topic for scientific investigation. Present at this paradigm shift were Koch and a handful of colleagues, including Ned Block, David Chalmers, Stanislas Dehaene, Giulio Tononi, Wolf Singer, and others. Aiding and abetting it were new techniques to listen in on the activity of individual nerve cells, clinical studies, and brain-imaging technologies that allowed safe and noninvasive study of the human brain in action. Koch gives us stories from the front lines of modern research into the neurobiology of consciousness as well as his own reflections on a variety of topics, including the distinction between attention and awareness, the unconscious, how neurons respond to Homer Simpson, the physics and biology of free will, dogs, Der Ring des Nibelungen, sentient machines, the loss of his belief in a personal God, and sadness. All of them are signposts in the pursuit of his life's work--to uncover the roots of consciousness. (shrink)