Assembling a global health image: Ethical and pragmatic tensions through the lenses of photographers
Ontology highlight
ABSTRACT:
SUBMITTER: Alenichev A
PROVIDER: S-EPMC10866471 | biostudies-literature | 2024 Jan
REPOSITORIES: biostudies-literature
Similar Datasets
Project description:BackgroundPublic health (PH) practitioners have a strong moral commitment to health equity and social justice. However, PH values often do not align with health systems values, making it challenging for PH practitioners to promote health equity. In spite of a growing range of PH ethics frameworks and theories, little is known about ethical concerns related to promotion of health equity in PH practice. The purpose of this paper is to examine the ethical concerns of PH practitioners in promoting health equity in the context of mental health promotion and prevention of harms of substance use.MethodsAs part of a broader program of public health systems and services research, we interviewed 32 PH practitioners.ResultsUsing constant comparative analysis, we identified four systemic ethical tensions: [1] biomedical versus social determinants of health agenda; [2] systems driven agendas versus situational care; [3] stigma and discrimination versus respect for persons; and [4] trust and autonomy versus surveillance and social control.ConclusionsNaming these tensions provides insights into the daily ethical challenges of PH practitioners and an opportunity to reflect on the relevance of PH frameworks. These findings highlight the value of relational ethics as a promising approach for developing ethical frameworks for PH practice.
| S-EPMC8375114 | biostudies-literature
Project description:Public health disasters reflect a class of global problems that generate moral quandaries and challenges. As such, they demand a global bioethical response involving an approach that is sufficiently nuanced at the local, trans-national, and global domains. Using the overlapping ethical issues engendered by Ebola and pandemic influenza outbreaks, atypical drug-resistant tuberculosis, and earthquakes, this chapter develops a global ethical framework for engaging PHDs. This framework exhibits sufficient responsiveness to local, global, microbial, and metaphysical realities as well as scientific concerns.
| S-EPMC7123572 | biostudies-literature
Project description:We describe a global health course and pedagogy that highlights the moral ambiguity and many ethical compromises that have emerged as the discipline has increasingly become institutionalised. We encourage students to reflect on how the oft-declared aspiration for global health equity still remains seriously contested as a normative and political matter, especially in settings like the USA. We further encourage students to reflect on how authentic concern for social justice, health equity and human rights are consistently undermined by unconscious and/or intentional fealty to standard operating procedures within hierarchical structures and systems. Lastly, we encourage students to openly question and critique the dominant socioeconomic and institutional paradigms that influence practitioner ways of thinking about global health. Our aim is to provide a learning space for students to at least imagine, if not demand, more daring modes of engagement. We also encourage our colleagues in the global health education community to be forthright that the process of institutionalising global health reliably favours our own interests more than those we claim to be most concerned about. If the ideal of global health is to build a bridge to human solidarity, we see substantial risk that current popularised approaches might never yield a structural tipping point.
| S-EPMC7500186 | biostudies-literature
Project description:Risk assessment differs from other medical interventions in that the welfare of the patient is not the immediate object of the intervention. However, improving the risk assessment process may reduce the chance of risk assessment itself being unjust. We explore the ethical arguments in relation to risk assessment as a medical intervention, drawing analogies, where applicable, with ethical arguments raised by general medical investigations. The article concludes by supporting the structured professional judgement approach as a method of risk assessment that is most consistent with the respect for principles of medical ethics. Recommendations are made for the future direction of risk assessment indicated by ethical theory.
| S-EPMC4115407 | biostudies-other
Project description:Most proteins exist with multiple domains in cells for cooperative functionality. However, structural biology and protein folding methods are often optimized for single-domain structures, resulting in a rapidly growing gap between the improved capability for tertiary structure determination and high demand for multidomain structure models. We have developed a pipeline, termed DEMO, for constructing multidomain protein structures by docking-based domain assembly simulations, with interdomain orientations determined by the distance profiles from analogous templates as detected through domain-level structure alignments. The pipeline was tested on a comprehensive benchmark set of 356 proteins consisting of 2-7 continuous and discontinuous domains, for which DEMO generated models with correct global fold (TM-score > 0.5) for 86% of cases with continuous domains and for 100% of cases with discontinuous domain structures, starting from randomly oriented target-domain structures. DEMO was also applied to reassemble multidomain targets in the CASP12 and CASP13 experiments using domain structures excised from the top server predictions, where the full-length DEMO models showed a significantly improved quality over the original server models. Finally, sparse restraints of mass spectrometry-generated cross-linking data and cryo-EM density maps are incorporated into DEMO, resulting in improvements in the average TM-score by 6.3% and 12.5%, respectively. The results demonstrate an efficient approach to assembling multidomain structures, which can be easily used for automated, genome-scale multidomain protein structure assembly.
| S-EPMC6689945 | biostudies-literature
Project description:Cluster randomized trials randomly assign groups of individuals to examine research questions or test interventions and measure their effects on individuals. Recent emphasis on quality improvement, comparative effectiveness, and learning health systems has prompted expanded use of pragmatic cluster randomized trials in routine health-care settings, which in turn poses practical and ethical challenges that current oversight frameworks may not adequately address. The 2012 Ottawa Statement provides a basis for considering many issues related to pragmatic cluster randomized trials but challenges remain, including some arising from the current US research and health-care regulations. In order to examine the ethical, regulatory, and practical questions facing pragmatic cluster randomized trials in health-care settings, the National Institutes of Health Health Care Systems Research Collaboratory convened a workshop in Bethesda, Maryland, in July 2013. Attendees included experts in clinical trials, patient advocacy, research ethics, and research regulations from academia, industry, the National Institutes of Health Collaboratory, and other federal agencies. Workshop participants identified substantial barriers to implementing these types of cluster randomized trials, including issues related to research design, gatekeepers and governance in health systems, consent, institutional review boards, data monitoring, privacy, and special populations. We describe these barriers and suggest means for understanding and overcoming them to facilitate pragmatic cluster randomized trials in health-care settings.
| S-EPMC4498459 | biostudies-literature
Project description:ImportancePragmatic clinical trials that seek informed consent after randomization (ie, postrandomization consent) are increasingly used, but debate on ethics persists because control arm patients are not specifically informed about the trials and randomization occurs before consent for the trials. The public's attitude toward postrandomization consent trials is unknown, but the way the trials are described could bias people's views.ObjectivesTo assess the attitudes of the US general public toward postrandomization informed consent for pragmatic trials and to measure potential framing and other factors associated with those attitudes.Design, setting, and participantsAn online, 2 × 2 experimental survey (fielded between February 23 and April 3, 2018) portraying 4 scenarios of postrandomization informed consent (with prior broad consent for medical record use) was conducted. These scenarios included traditional randomized clinical trial language framing vs alternative framing in a high-stakes trial (ie, survival in leukemia) or low-stakes trial (ie, blood glucose level in diabetes). A total of 3793 individuals invited to participate were part of an existing panel representative of the US general public (GfK KnowledgePanel).Main outcomes and measuresThe proportion of participants who would recommend that an ethics review board approve a postrandomization consent pragmatic trial.ResultsA total of 2042 of 3739 invitees (54.6%) responded; after exclusion of 38 incomplete surveys, 2004 participants were included in the analysis. Of these, 997 (49.8%) were women, 1440 (71.9%) were white non-Hispanic, 199 (9.9%) were black non-Hispanic, and 233 (11.6%) were Hispanic. Mean (SD) age was 47.5 (17.4) years. Across scenarios, weighted data showed that 75.4% of the participants would recommend approval of the postrandomization consent pragmatic trial, 20.4% would probably not recommend approval, and 4.2% would definitely not recommend approval. Approval was not sensitive to framing language (traditional vs new framing in high-stakes scenario, 74.3% vs 76.8%, P = .40; in low-stakes scenario, 77.7% vs 72.9%, P = .10) or to the stakes (low vs high stakes in traditional framing, 77.7% vs 74.3%, P = .25; in new framing, 72.9% vs 76.8%, P = .18). Better understanding of the postrandomization consent design was associated with higher rate of approval (78.1% vs 65.0%, P = .002 for high-stakes scenario; 77.2% vs 64.9%, P = .004 for low-stakes scenario), especially among those with less education. However, opinions about personal involvement in the control arm were more cautious (range depending on scenario, 45.6%-59.7%) and sensitive to stakes but not to framing.Conclusions and relevanceThe public's generally high rate of approval of the ethics of postrandomization informed consent for pragmatic trial designs does not appear to be affected by whether postrandomization consent design is framed using traditional randomized clinical trial terminology, regardless of the stakes of the trial. Promoting better understanding of the design may increase its acceptance by the public.
| S-EPMC6324565 | biostudies-literature
Project description:To take full advantage of high-throughput genetic and physical interaction mapping projects, the raw interactions must first be assembled into models of cell structure and function. PanGIA (for physical and genetic interaction alignment) is a plug-in for the bioinformatics platform Cytoscape, designed to integrate physical and genetic interactions into hierarchical module maps. PanGIA identifies 'modules' as sets of proteins whose physical and genetic interaction data matches that of known protein complexes. Higher-order functional cooperativity and redundancy is identified by enrichment for genetic interactions across modules. This protocol begins with importing interaction networks into Cytoscape, followed by filtering and basic network visualization. Next, PanGIA is used to infer a set of modules and their functional inter-relationships. This module map is visualized in a number of intuitive ways, and modules are tested for functional enrichment and overlap with known complexes. The full protocol can be completed between 10 and 30 min, depending on the size of the data set being analyzed.
| S-EPMC3383003 | biostudies-literature
Project description:BACKGROUND:The progress of electronic health technologies and biobanks holds enormous promise for efficient research. Evidence shows that studies based on sharing and secondary use of data/samples have the potential to significantly advance medical knowledge. However, sharing of such resources for international collaboration is hampered by the lack of clarity about ethical and legal requirements for transfer of data and samples across international borders. MAIN TEXT:Here, the International Clinical Trial Center Network (ICN) reports the legal and ethical requirements governing data and sample exchange (DSE) across four continents. The most recurring requirement is ethical approval, whereas only in specific conditions approval of national health authorities is required. Informed consent is not required in all sharing situations. However, waiver of informed consent is only allowed in certain countries/regions and under certain circumstances. The current legal and ethical landscape appears to be very complex and under constant evolution. Regulations differ between countries/regions and are often incomplete, leading to uncertainty. CONCLUSION:With this work, ICN illuminates the unmet need for a single international collaborative framework to facilitate DSE. Harmonising requirements for global DSE will reduce inefficiency and waste in research. There are many challenges to realising this ambitious vision, including inconsistent terminology and definitions, and heterogeneous and dynamic legal constraints. Here, we identify areas of agreement and significant difference as a necessary first step towards facilitating international collaboration. We propose the establishment of a working group to continue the comparison across jurisdictions, create a standardised glossary and define a set of basic principles and fundamental requirements for DSE.
| S-EPMC6975025 | biostudies-literature
Project description: Not available
| S-EPMC6816812 | biostudies-literature