Community engagement to protect and empower participating individuals and communities is an ethical requirement in research. There is however limited evidence on effectiveness or relevance of some of the approaches used to improve ethical practice. We conducted a study to understand the rationale, relevance and benefits of community engagement in health research. This paper draws from this wider study and focuses on factors that shaped Community Advisory Group members’ selection processes and functions in Malawi. A qualitative research design was used; (...) two participatory workshops were conducted with CAG members to understand their roles in research. Workshop findings were triangulated with insights from ethnographic field notes, key informant interviews with stakeholders, focus group discussions with community members and document reviews. Data were coded manually and thematic content analysis was used to identify main issues. Results have shown that democratic selection of CAG members presented challenges in both urban and rural settings. We also noted that CAG members perceived their role as a form of employment which potentially led to ineffective representation of community interests. We conclude that democratic voting is not enough to ensure effective representation of community's interests of ethical relevance. CAG members’ abilities to understand research ethics, identify potential harms to community and communicate feedback to researchers is critical to optimise engagement of lay community and avoid tokenistic engagement. (shrink)

BackgroundHuman infection studies (HIS) are valuable in vaccine development. Deliberate infection, however, creates challenging questions, particularly in low and middle-income countries (LMICs) where HIS are new and ethical challenges may be heightened. Consultation with stakeholders is needed to support contextually appropriate and acceptable study design. We examined stakeholder perceptions about the acceptability and ethics of HIS in Malawi, to inform decisions about planned pneumococcal challenge research and wider understanding of HIS ethics in LMICs.MethodsWe conducted 6 deliberative focus groups and 15 (...) follow-up interviews with research staff, medical students, and community representatives from rural and urban Blantyre. We also conducted 5 key informant interviews with clinicians, ethics committee members, and district health government officials.ResultsStakeholders perceived HIS research to have potential population health benefits, but they also had concerns, particularly related to the safety of volunteers and negative community reactions. Acceptability depended on a range of conditions related to procedures for voluntary and informed consent, inclusion criteria, medical care or support, compensation, regulation, and robust community engagement. These conditions largely mirror those in existing guidelines for HIS and biomedical research in LMICs. Stakeholder perceptions pointed to potential tensions, for example, balancing equity, safety, and relevance in inclusion criteria.ConclusionsOur findings suggest HIS research could be acceptable in Malawi, provided certain conditions are in place. Ongoing assessment of participant experiences and stakeholder perceptions will be required to strengthen HIS research during development and roll-out. (shrink)

ABSTRACTBuilding trust between researchers and communities involved in research is one goal of community engagement. This paper examines the implications of community engagement for trust within communities, including trust among community volunteers who assist with research and between these volunteers and other community members. We describe the experiences of two groups of community volunteers recruited as part of an HIV and TB intervention trial in Malawi: cluster representatives, recruited both to act as key informants for TB suspects and mortality reporting (...) and to identify and report community concerns, and community counsellors, recruited to provide semi-supervised HIV self-testing. We examine tensions experienced due to playing multiple roles, and the implications of volunteer responsibilities for short- and long-term community relationships. Data was collected through a workshop, in-depth interviews and focus group discussions with volunteers and community members. While the volunteer system init... (shrink)

Biometrics is the science of establishing the identity of an individual based on their physical attributes. Ethical concerns surrounding the appropriate use of biometrics have been raised, especial...

Duty of care is the core ethical responsibility of healthcare workers. Getting the workforce vaccinated will provide safety to the public, protect the vulnerable population and provide a safe working environment. While most agree that healthcare workers should be prioritised in the vaccination programme, mandatory vaccination remains a complicated and contentious issue with political, legal and ethical dimensions. This study aims to determine the ethical considerations associated with mandatory vaccinations among healthcare workers. A total of 152 abstracts were identified of (...) which, 142 were excluded based on abstracts because they did not meet the inclusion criteria. The remaining ten articles were further evaluated with three articles that fit the inclusion criteria specifically discussing mandatory vaccination among healthcare workers and the ethical issues. Benefits, risks, effectiveness, equity and justice, autonomy, reciprocity and trust were used as a framework to discuss the ethical considerations which resonated both directly from the included papers, as well as more generally from the other literature associated with this search. There is limited literature on the topic of ethical considerations associated with COVID-19 mandatory vaccination of healthcare workers, as a systematic review identified only 3 papers. Benefits, risks, effectiveness, equity and justice, autonomy, reciprocity and trust were among the seven ethical considerations identified and discussed. (shrink)

BackgroundThe COVID-19 pandemic has presented extraordinary challenges to worldwide healthcare systems, however, prevalence remains low in some countries. While the challenges of conducting research in high-prevalence countries are well published, there is a paucity from low COVID-19 countries.MethodsA PRISMA guided systematic review was conducted using the databases Ovid-Medline, Embase, Scopus and Web of Science to identify relevant articles discussing ethical issues relating to research in low prevalence COVID-19 countries.ResultsThe search yielded 133 original articles of which only 2 fit the inclusion (...) criteria and aim, with neither specific to low prevalence. Most of the available literature focused on clinical management and resource allocation related to high prevalence countries. These results will be discussed under the ethical dimensions of equity, individual liberty, privacy and confidentiality, proportionality, public protection, provision of care, reciprocity, stewardship and trust..ConclusionsA systematic review failed to identify articles relating to COVID-19 research ethics, specific to low prevalence countries. It shows that there is a significant gap in the literature that warrants further investigation. Common ethical principles were used to present a distinct set of challenges experienced by a country with a low prevalence of COVID-19. This unique perspective of some of the common ethical problems surrounding research, may help guide further discussion and guide research in similar countries. (shrink)

Cognition in living entities—and their social groupings or institutional artifacts—is necessarily as complicated as their embedding environments, which, for humans, includes a particularly rich cultural milieu. The asymptotic limit theorems of information and control theories permit construction of a new class of empirical ‘regression-like’ statistical models for cognitive developmental processes, their dynamics, and modes of dysfunction. Such models may, as have their simpler analogs, prove useful in the study and re-mediation of cognitive failure at and across the scales and levels (...) of organization that constitute and drive the phenomena of life. These new models particularly focus on the roles of sociocultural environment and stress, in a large sense, as both trigger for the failure of the regulation of bio-cognition and as ‘riverbanks’ determining the channels of pathology, with implications across life-course developmental trajectories. We examine the effects of an embedding cultural milieu and its socioeconomic implementations using the ‘lenses’ of metabolic optimization, control system theory, and an extension of symmetry-breaking appropriate to information systems. A central implication is that most, if not all, human developmental disorders are fundamentally culture-bound syndromes. This has deep implications for both individual treatment and public health policy. (shrink)

The asymptotic limit theorems of information and control theories permit exploration of a surprising number of temperature-like measures and symmetry-breaking dynamics associated with cognition. Each of several markedly different perspectives produces a distinct temperature-analog, capturing a rich and highly-punctuated behavioral landscape across the complex, hierarchical cognitive phenomena that characterize life at every scale and level of organization. Theories of cognition may be confronted by canonical conundrums similar to those plaguing the study of consciousness and its regulation. In short, there may (...) be a spectrum of interacting cognitive ‘temperatures’ for organisms, social structures, institutions, information processing machines, and their composite entities, that varies across different systems, and between similar systems having undergone different individual developmental trajectories. The complexities of cognitive failure—leading to a vast array of pathologies—may be far stranger than generally recognized. (shrink)

The central paradigm of arti?cial intelligence is rapidly shifting toward biological models for both robotic devices and systems performing such critical tasks as network management, vehicle navigation, and process control. Here we use a recent mathematical analysis of the necessary conditions for consciousness in humans to explore likely failure modes inherent to a broad class of biologically inspired computing machines. Analogs to developmental psychopathology, in which regulatory mechanisms for consciousness fail progressively and subtly understress, and toinattentional blindness, where a narrow (...) 'syntactic band pass' de?ned by the rate distortion manifold of conscious attention results in pathological ?xation, seem inevitable. Similar problems are likely to confront other possible architectures, although their mathematical description may be far less straightforward. Computing devices constructed on biological paradigms will inevitably lack the elaborate, but poorly understood, system of control mechanisms which has evolved over the last few hundred million years to stabilize consciousness in higher animals. This will make such machines prone to insidious degradation, and, ultimately, catastrophic failure. (shrink)

We extend recent information-theoretic phase transition approaches to evolutionary and cognitive process via the Rate Distortion and Joint Asymptotic Equipartition Theorems, in the circumstance of interaction with a highly structured environment. This suggests that learning plateaus in cognitive systems and punctuated equilibria in evolutionary process are formally analogous, even though evolution is not cognitive. Extending arguments by Adami et al. (2000), we argue that 'adaptation' is the process by which a distorted genetic image of a coherently structured environment is imposed (...) upon a species. (shrink)

Applying a necessary condition communication theory formalism roughly similar to that of Dretske, but focused entirely on the statistical properties of long sequences of signals emitted by the interacting cognitive modules of human biology, we explore the regularities apparent in comorbid psychiatric and chronic physical disorders using an extension of recent perspectives on autoimmune disease. We find that structured psychosocial stress can literally write a distorted image of itself onto child development, resulting in a life course trajectory to characteristic forms (...) of comorbid mind/body dysfunction affecting both dominant and subordinate populations within a pathogenic social hierarchy. (shrink)

Evolution is littered with paraphyletic convergences: many roads lead to functional Romes. We propose here another example - an equivalence class structure factoring the broad realm of possible realizations of the Baars Global Workspace consciousness model. The construction suggests many different physiological systems can support rapidly shifting, sometimes highly tunable, temporary assemblages of interacting unconscious cognitive modules. The discovery implies various animal taxa exhibiting behaviors we broadly recognize as conscious are, in fact, simply expressing different forms of the same underlying (...) phenomenon. Mathematically, we find much slower, and even multiple simultaneous, versions of the basic structure can operate over very long timescales, a kind of paraconsciousness often ascribed to group phenomena. The variety of possibilities, a veritable rainbow, suggests minds today may be only a small surviving fraction of ancient evolutionary radiations - bush phylogenies of consciousness and paraconsciousness. Under this scenario, the resulting diversity was subsequently pruned by selection and chance extinction. Though few traces of the radiation may be found in the direct fossil record, exaptations and vestiges are scattered across the living mind. Humans, for instance, display an uncommonly profound synergism between individual consciousness and their embedding cultural heritages, enabling efficient Lamarkian adaptation. (shrink)

We extend the comparatively simple processes of group symmetry-breaking in physical systems to groupoid/equivalence class phase transitions characterizing adiabatically, piecewise stationary, information transmission in prebiotic, biological, and social phenomena: High vs. Low probability paths $$\rightarrow$$ Interior and Exterior Interact $$\rightarrow$$ Multiple Interacting Tunable Workspaces Application to nonstationary processes seems possible via generalizations of the symmetry algebra, for example, to semigroupoids. The dynamic probability models explored here can be transformed into statistical tools for the analysis of real-time and other data across (...) a spectrum of important disciplines confronted by biological and other forms of cognition and their dysfunctions. (shrink)

Mitochondrial dysfunction underlies a vast array of chronic disorders across the life span. The asymptotic limit theorems of information and control theories, supplemented by symmetry-breaking phase transition arguments adapted from physical theory, give deep insight into canonical mechanisms of cognition and regulation associated with such dysfunction. The probability models studied here can provide a foundation for the development of statistical tools useful in clinical and public health address of those disorders.

Evolution is littered with polyphyletic parallelism: many roads lead to functional Romes. We propose consciousness embodies one such example, and represent it here with an equivalence class structure that factors the broad realm of necessary conditions information theoretic realizations of Baars’ global workspace model. The construction suggests many different physiological systems can support rapidly shifting, highly tunable, and even simultaneous temporary assemblages of interacting unconscious cognitive modules. The discovery implies various animal taxa exhibiting behaviors we broadly recognize as conscious are, (...) in fact, expressing different forms of the same underlying phenomenon. The variety of possibilities suggests minds today may be only a small surviving fraction of ancient evolutionary radiations – bush phylogenies of consciousness pruned by selection and chance extinction. Although few traces of the radiations may be found in the fossil record, exaptations and vestiges are scattered across the living mind. (shrink)

The argument from appearance for the content view or intentionalism attracts a lot of attention recently. In my paper, I follow Charles Travis to argue against the key premise that representational content can be ‘read off’ from a certain way that a thing looks to a subject. My arguments are built upon Travis’s original objection and a reinterpretation of Rodrick Chisholm’s comparative and noncomparative uses of appearance words. Byrne, Schellenberg and others interpret Travis’ ‘visual looks’ as Chisholm’s comparative use, (...) and appeal to the noncomparative use as an alternative to avoid Travis’s objection. I demonstrate that they misunderstand both Chisholm and Travis. Both the comparative use and the noncomparative use are semantic notions, while ‘visual looks’ is a metaphysical one. Although Chisholm’s appearance objectivism –– that appearance expressions attribute appearances to ordinary objects –– is close to ‘visual looks’, appearance objectivism is not exceptional to the noncomparative use as Byrne interprets. In the end, I also show that Byrnean’s conception of distinctive visual gestalt cannot exclude contrary representational contents, because a distinctive visual gestalt can be shared by different kinds of things. Besides, Byrne and others do not explain why a distinctive visual gestalt should be presented as ‘being instantiated’. Therefore, I conclude that representational content cannot be read off from a certain way that a thing looks to a subject; the argument from appearance thus fails. (shrink)