Background Inadequate knowledge among health care providers (HCPs) and parents of affected children limits the understanding and utility of secondary genetic findings (SFs) in under-represented populations in genomics research. SFs arise from deep DNA sequencing done for research or diagnostic purposes and may burden patients and their families despite their potential health importance. This study aims to evaluate the perspective of both groups regarding SFs and their choices in the return of results from genetic testing in the context of orofacial (...) clefts.Methods Using an online survey, we evaluated the experiences of 252 HCPs and 197 parents across participating cleft clinics in Ghana and Nigeria toward the return of SFs across several domains.Results Only 1.6% of the HCPs felt they had an expert understanding of when and how to incorporate genomic medicine into practice, while 50.0% agreed that all SFs should be returned to patients. About 95.4% of parents were willing to receive all the information from genetic testing (including SFs), while the majority cited physicians as their primary information source (64%).Conclusions Overall, parents and providers were aware that genetic testing could help in the clinical management of diseases. However, they cited a lack of knowledge about genomic medicine, uncertain clinical utility, and lack of available learning resources as barriers. The knowledge gained from this study will assist with developing guidelines and policies to guide providers on the return of SFs in sub-Saharan Africa and across the continent. (shrink)

Checklists have been used to improve quality in many industries, including healthcare. The use of checklists, however, has not been extensively evaluated in clinical ethics consultation. This article seeks to fill this gap by exploring the efficacy of using a checklist in ethics consultation, as tested by an empirical investigation of the use of the checklist at a large academic medical system (Cleveland Clinic). The specific aims of this project are as follows: (1) to improve the quality of ethics consultations (...) by providing reminders to ethics consultants about process steps that are important for most patient-centered ethics consultations, (2) to create consistency in the ethics consultation process across the medical system, and (3) to establish an effective educational tool for trainers and trainees in clinical ethics consultation. The checklist was developed after a thorough literature review and an iterative process of revising and testing by a group of experienced ethics consultants. To pilot test the checklist, it was distributed to 46 ethics consultants. After a six-month pilot period in which ethics professionals used the checklist during their clinical activities, a survey was distributed to all of those who used the checklist. The 10-item survey examined consultants’ perceptions regarding the three aims listed above. Of the 25 survey respondents, 11 self-reported as experts in ethics consultation, nine perceived themselves to have mid-level expertise, and five self-reported as novices. The majority (68 percent) of all respondents, regardless of expertise, believed that the checklist could be a “helpful” or “very helpful” tool in the consultation process generally. Novices were more likely than experts to believe that the checklist would be useful in conducting consultations. The limitations of this study include: reduced generalizability given that this project was conducted at one medical system, utilized a small sample size, and used self-reported quality outcome measures. Despite these limitations, to the authors’ knowledge this is the first investigatation of the use of a checklist systematically to improve quality in ethics consultation. Importantly, our findings shed light on ways this checklist can be used to improve ethics consultation, including its use as an educational tool. The authors hope to test the checklist with consultants in other healthcare systems to explore its usefulness in different healthcare environments. (shrink)

When someone encounters an explanation perceived as weak, this may lead to a feeling of deprivation or tension that can be resolved by engaging in additional learning. This study examined to what extent children respond to weak explanations by seeking additional learning opportunities. Seven‐ to ten‐year‐olds (N = 81) explored questions and explanations (circular or mechanistic) about 12 animals using a novel Android tablet application. After rating the quality of an initial explanation, children could request and receive additional information or (...) return to the main menu to choose a new animal to explore. Consistent with past research, there were both developmental and IQ‐related differences in how children evaluated explanation quality. But across development, children were more likely to request additional information in response to circular explanations than mechanistic explanations. Importantly, children were also more likely to request additional information in direct response to explanations that they themselves had assigned low ratings, regardless of explanation type. In addition, there was significant variability in both children's explanation evaluation and their exploration, suggesting important directions for future research. The findings support the deprivation theory of curiosity and offer implications for education. (shrink)

Au Congrès de philosophie scientifique de 1935 comme lors du lancement de l’Encyclopédie internationale de la science unifiée, Federigo Enriques était reconnu par les néo-positivistes comme un de leurs pères fondateurs, sans qu’il fût tout à fait d’accord. À Paris, Enriques représentait le groupe des philosophes des sciences italiens et son nom était lié au journal Scientia, ouvert aux contributions des positivistes logiques. Ces derniers, désireux de constituer un front commun pour lutter contre les philosophies idéalistes et métaphysiques alors dominantes, (...) surestimaient sans doute la force du groupe italien, comme ils sous-estimaient les critiques d’Enriques sur l’usage de la logique formelle ou sur l’importance du langage. Dès les débuts de son implication en philosophie, il avait souligné la nécessité d’une fondation psychologique des concepts scientifiques, et en 1901, il avait donné un exemple de ce type d’analyse pour les postulats de la géométrie. Il n’appréciait guère les travaux logiques de Giuseppe Peano, affirmant que son formalisme manquait de bases psychologiques. Cependant, contre les mouvements anti-rationalistes de son temps, il défendait la valeur cognitive de la science et, dans ce climat d’appréciation mutuelle, les différences passaient au second plan. (shrink)

On 5 August 1968, publication of the Harvard Committee’s report on the subject of “irreversible coma” established a standard for diagnosing death on neurological grounds. On the same day, the 22nd World Medical Assembly met in Sydney, Australia, and announced the Declaration of Sydney, a pronouncement on death, which is less often quoted because it was overshadowed by the impact of the Harvard Report. To put those events into present-day perspective, the authors reviewed all papers published on this (...) subject and the World Medical Association web page and documents, and corresponded with Dr A G Romualdez, the son of Dr A Z Romualdez. There was vast neurological expertise among some of the Harvard Committee members, leading to a comprehensible and practical clinical description of the brain death syndrome and the way to diagnose it. This landmark account had a global medical and social impact on the issue of human death, which simultaneously lessened reception of the Declaration of Sydney. Nonetheless, the Declaration of Sydney faced the main conceptual and philosophical issues on human death in a bold and forthright manner. This statement differentiated the meaning of death at the cellular and tissue levels from the death of the person. This was a pioneering view on the discussion of human death, published as early as in 1968, that should be recognised by current and future generations. (shrink)

Background Outbreaks of infectious disease cause serious and costly health and social problems. Two new technologies – pathogen whole genome sequencing and Big Data analytics – promise to improve our capacity to detect and control outbreaks earlier, saving lives and resources. However, routinely using these technologies to capture more detailed and specific personal information could be perceived as intrusive and a threat to privacy. Method Four community juries were convened in two demographically different Sydney municipalities and two regional cities (...) in New South Wales, Australia to elicit the views of well-informed community members on the acceptability and legitimacy of: making pathogen WGS and linked administrative data available for public health researchusing this information in concert with data linkage and machine learning to enhance communicable disease surveillance systems Fifty participants of diverse backgrounds, mixed genders and ages were recruited by random-digit-dialling and topic-blinded social-media advertising. Each jury was presented with balanced factual evidence supporting different expert perspectives on the potential benefits and costs of technologically enhanced public health research and communicable disease surveillance and given the opportunity to question experts. Results Almost all jurors supported data linkage and WGS on routinely collected patient isolates for the purposes of public health research, provided standard de-identification practices were applied. However, allowing this information to be operationalised as a syndromic surveillance system was highly contentious with three juries voting in favour, and one against by narrow margins. For those in favour, support depended on several conditions related to system oversight and security being met. Those against were concerned about loss of privacy and did not trust Australian governments to run secure and effective systems. Conclusions Participants across all four events strongly supported the introduction of data linkage and pathogenomics to public health research under current research governance structures. Combining pathogen WGS with event-based data surveillance systems, however, is likely to be controversial because of a lack of public trust, even when the potential public health benefits are clear. Any suggestion of private sector involvement or commercialisation of WGS or surveillance data was unanimously rejected. (shrink)

Although it is commonly believed that the concept of brain death was developed to benefit organ transplants, it evolved independently. Transplantation owed its development to advances in surgery and immunosuppressive treatment; BD owed its origin to the development of intensive care. The first autotransplant was achieved in the early 1900s, when studies of increased intracranial pressure causing respiratory arrest with preserved heartbeat were reported. Between 1902 and 1950, the BD concept was supported by the discovery of EEG, Crile’s definition of (...) death, the use of EEG to demonstrate abolition of brain potentials after ischaemia, and Crafoord’s statement that death was due to cessation of blood flow. Transplantation saw the first xenotransplant in humans and the first unsuccessful kidney transplant from a cadaver. In the 1950s, circulatory arrest in coma was identified by angiography, and the death of the nervous system and coma dépassé were described. Murray performed the first successful kidney transplant. In the 1960s, the BD concept and organ transplants were instantly linked when the first kidney transplant using a brain-dead donor was performed; Schwab proposed to use EEG in BD; the Harvard Committee report and the Sydney Declaration appeared; the first successful kidney, lung and pancreas transplants using cadaveric donors were achieved; Barnard performed the first human heart transplant. This historical review demonstrates that the BD concept and organ transplantation arose separately and advanced in parallel, and only began to progress together in the late 1960s. Therefore, the BD concept did not evolve to benefit transplantation. (shrink)

Background Diversity in Institutional Review Board (IRB) membership is important for both intrinsic and instrumental reasons, including fairness, promoting trust, improving decision quality, and responding to systemic racism. Yet U.S. IRBs remain racially and ethnically homogeneous, even as gender diversity has improved. Little is known about IRB chairpersons’ perspectives on membership diversity and barriers to increasing it, as well as current institutional efforts to promote diversity, equity, and inclusion (DEI) within IRB membership.Methods We surveyed IRB chairpersons leading U.S. boards registered (...) with the Office for Human Research Protections. Here, we focus exclusively on responses from a subset of 388 chairpersons of IRBs at universities and academic medical centers (AMCs).Results Board chairs were predominantly white and evenly split between men and women. Only about half reported that their boards had at least one member who is Black or African American (51%), Asian (56%), or Hispanic (48%), with 85% of university/AMC boards comprised entirely (15%) or mostly (70%) of white members. Most IRB chairpersons (64%) reported satisfaction with the current diversity of their membership. Participants largely agreed that considering diversity in the selection of IRB members is important (91%), including to improve the quality of IRB deliberation (80%), with an emphasis on racial/ethnic (85%) and gender diversity (74%). Most participants (80%) reported some type of active DEI effort regarding board membership at their university/AMC and just over half (57%) expressed satisfaction with these efforts.Conclusions Our national survey found that although university/AMC IRB chairpersons report valuing diversity in board membership, it may be lacking in key areas. Going forward, it will be important to specify clear reasons for diversity in the IRB context, as well to establish targets for acceptable levels of board diversity and to match DEI efforts to those targets. (shrink)

Francisco Suárez Sometimes called the "Eminent Doctor" after Paul V’s designation of him as doctor eximius et pius, Francisco Suárez was the leading theological and philosophical light of Spain’s Golden Age, alongside such cultural icons as Miguel de Cervantes, Tomás Luis de Victoria, and El Greco. Although initially rejected on grounds of deficient health … Continue reading Suárez, Francisco →.

Plusieurs épreuves peuvent être engagées avec l’image, depuis les "devinettes" du Sphinx auxquelles répond brillamment Oedipe jusqu’à la panique télévisuelle que déclenche l’entrée en eau d’Éric Moussambani aux jeux Olympiques de Sydney. Chacune des épreuves prises en compte dans cet ouvrage implique la mise en relation de l’image et du corps. Cet ouvrage se propose de mener une enquête pour tenter de comprendre comment, pour faire-image, un corps doit s’insérer dans une nouvelle configuration du sensible, à partir d’un choix (...) d’objets issus du théâtre, de la littérature, de la philosophie, du cinéma et de la télévision. Depuis Oedipe jusqu’aux Monty Pythons, de La Bruyère à Hrundi V. Bakshi, le héros du film The Party, de Blake Edwards, avec les traités de Balzac, de Barbey d’Aurevilly ou de Marcel Mauss, une "épreuve de l’image" se précise dans une nouvelle transaction des corps et de l’espace, où se déploient également de nouvelles puissances des corps. (shrink)

Dr Sydney Brenner has played a major, and unique, role in biology during the past 40 years. His contributions have ranged from key work on the structure of the genetic code and the existence of mRNA through the development of Caenorhabditis elegans as a key model system in developmental biology to genomic analysis and function in vertebrates. BioEssays went to interview Dr Brenner at his home in the cathedral city of Ely, England, on the significance of the genome projects (...) for human biology, in particular, and for biology, in general. (shrink)

Despite the importance of Suárez’s defense of the freedom of the will at the threshold of early modern philosophy, his account has received scant recent attention. This paper aims partially to redress that neglect. Suárez’s position can be understood as a balancing act between desiring to attribute libertarian freedom to agents and desiring to maintain the will’s status as a rational appetite. Hence, he rejects an intellectualism that says that choices are necessitated by the intellect’s judgements (since he does not (...) think that the judgements themselves can be directly free), but affirms that only what is judged good can be chosen. (shrink)