Researchers typically attempt to fulfill disclosure and informed consent requirements by having participants read and sign consent forms. The present study evaluated the reading levels of informed consent forms used in psychology research and other fields (medical research; social science and education research; and health, physical education, and recreation research). Two standardized measures of readability were employed to analyze a randomly selected sample (N = 108) of informed consent forms used in Institutional Review Board-approved research projects at a midwestern university (...) during the 1987-1988 academic year. Results indicate that informed consent forms are typically written at a higher reading level than is appropriate for the intended population and that there are no consistently significant differences in readability among areas of research or between college student and noncollege student participants. Due to the unacceptably high reading level of the consent forms, one must question whether participants can comprehend the information contained in the consent forms. (shrink)

Objective To study how doctors care for their patients, both medically and as fellow humans, through observing their conduct in patient–doctor encounters. Design Qualitative study in which 101 videotaped consultations were observed and analysed using a Grounded Theory approach, generating explanatory categories through a hermeneutical analysis of the taped consultations. Setting A 500-bed general teaching hospital in Norway. Participants 71 doctors working in clinical non-psychiatric departments and their patients. Results The doctors were concerned about their patients' health and how their (...) medical knowledge could be of service. This medical focus often over-rode other important aspects of the consultations, especially existential elements. The doctors actively directed the focus away from their patients' existential concerns onto medical facts and rarely addressed the personal aspects of a patient's condition, treating them in a biomechanical manner. At the same time, however, the doctors attended to their patients with courteousness, displaying a polite and friendly attitude and emphasising the relationship between them. Conclusions The study suggests that the main failing of patient–doctor encounters is not a lack of courteous manners, but the moral offence patients experience when existential concerns are ignored. Improving doctors' social and communication skills cannot resolve this moral problem, which appears to be intrinsically bound to modern medical practice. Acknowledging this moral offence would, however, be the first step towards minimising the effects thereof. (shrink)

Progressive supranuclear palsy is a movement disorder with prominent tau neuropathology. Brain diseases with abnormal tau deposits are called tauopathies, the most common of which is Alzheimer's disease. Environmental causes of tauopathies include repetitive head trauma associated with some sports. To identify common genetic variation contributing to risk for tauopathies, we carried out a genome-wide association study of 1,114 individuals with PSP and 3,247 controls followed by a second stage in which we genotyped 1,051 cases and 3,560 controls for the (...) stage 1 SNPs that yielded P ≤ 10-3. We found significant previously unidentified signals associated with PSP risk at STX6, EIF2AK3 and MOBP. We confirmed two independent variants in MAPT affecting risk for PSP, one of which influences MAPT brain expression. The genes implicated encode proteins for vesicle-membrane fusion at the Golgi-endosomal interface, for the endoplasmic reticulum unfolded protein response and for a myelin structural component. © 2011 Nature America, Inc. All rights reserved. (shrink)

Background: Although fair distribution of healthcare services for older patients is an important challenge, qualitative research exploring clinicians’ considerations in clinical prioritisation within this field is scarce. Objectives: To explore how clinicians understand their professional role in clinical prioritisations in healthcare services for old patients. Design: A semi-structured interview-guide was employed to interview 45 clinicians working with older patients. The interviews were analysed qualitatively using hermeneutical content analysis. Participants: 20 physicians and 25 nurses working in public hospitals and nursing homes (...) in different parts of Norway. Results and interpretations: The clinicians struggle with not being able to attend to the comprehensive needs of older patients, and being unfaithful to professional ideals and expectations. There is a tendency towards lowering the standards and narrowing the role of the clinician. This is done in order to secure the vital needs of the patient, but is at the expense of good practice and holistic role modelling. Increased specialisation, advances and increase in medical interventions, economical incentives, organisational structures, and biomedical paradigms, may all contribute to a narrowing of the clinicians’ role. Conclusion: Distributing healthcare services in a fair way is generally not described as integral to the clinicians’ role in clinical prioritisations. If considerations of justice are not included in clinicians’ role, it is likely that others will shape major parts of their roles and responsibilities in clinical prioritisations. Fair distribution of healthcare services for older patients is possible only if clinicians accept responsibility in these questions. (shrink)

Aim: This study explores priority dilemmas in dialysis treatment and care offered elderly patients within the Norwegian public healthcare system.Background: Inadequate healthcare due to advanced age is frequently reported in Norway. The Norwegian guidelines for healthcare priorities state that age alone is not a relevant criterion. However, chronological age, if it affects the risk or effect of medical treatment, can be a legitimate criterion.Method: A qualitative approach is used. Data were collected through semistructured interviews and analysed through hermeneutical content analysis. (...) The informants were five physicians and four nurses from dialysis wards.Findings: Pressing priority dilemmas centre around decision-making concerning withholding and withdrawal of dialysis treatment. Advanced age is rarely an absolute or sole priority criterion. It seems, however, that advanced age appears to be a more subtle criterion in relation with, for example, comorbidity, functional status and cognitive impairment. Nurses primarily prioritise specialised dialysis care and not comprehensive nursing care. The complex needs of elderly patients are therefore often not always met.Conclusions: Clinical priorities should be made more transparent in order to secure legitimate and fair resource allocation in dialysis treatment and care. Difficult decisions concerning withholding or withdrawal of dialysis ought to be openly discussed within the healthcare team as well as with patients and significant others. The biomedical focus and limitations on comprehensive care during dialysis should be debated. (shrink)

The Mental Health Act 2007 introduced Deprivation of Liberty safeguards into the Mental Capacity Act 2005 with potentially far reaching resource implications. There appears to be no scientific data regarding the prevalence of deprivation of liberty in clinical settings such as hospitals and nursing homes. We examined how many patients across a whole Trust area in Wales were subject to some lack of capacity, how well documented this was and how many were potentially deprived of their liberty. We found that (...) no patient was deprived of their liberty, but 8% lacked capacity to make either basic or complex decisions; another 5% lacked capacity to make complex decisions. Documentation was good in mental health and community directorates, but there were gaps in documentation (not practice) in the medical and surgical directorates. Routine collection of data improved documentation regarding deprivation of liberty criteria. There is a high likelihood that senior nursing staff underestimate the number of patients who lack capacity. (shrink)

Consider the concept combination ‘pet human’. In word association experiments, human subjects produce the associate ‘slave’ in relation to this combination. The striking aspect of this associate is that it is not produced as an associate of ‘pet’, or ‘human’ in isolation. In other words, the associate ‘slave’ seems to be emergent. Such emergent associations sometimes have a creative character and cognitive science is largely silent about how we produce them. Departing from a dimensional model of human conceptual space, this (...) article will explore concept combinations, and will argue that emergent associations are a result of abductive reasoning within conceptual space, that is, below the symbolic level of cognition. A tensor-based approach is used to model concept combinations allowing such combinations to be formalized as interacting quantum systems. Free association norm data is used to motivate the underlying basis of the conceptual space. It is shown by analogy how some concept combinations may behave like quantum-entangled particles. Two methods of analysis were presented for empirically validating the presence of non-separable concept combinations in human cognition. One method is based on quantum theory and another based on comparing a joint probability distribution with another distribution based on a separability assumption using a chi-square goodness-of-fit test. Although these methods were inconclusive in relation to an empirical study of bi-ambiguous concept combinations, avenues for further refinement of these methods are identified. (shrink)

The study of the interrelationship between ethnomedicinal knowledge and socio-cultural values needs to be studied mainly for the simple reason that culture is not only the ethical imperative for development, it is also the condition of its sustainability; for their exists a symbiotic relationship between habitats and cultures. The traditional communities around Binsar Wildlife Sanctuary of Uttarakhand state in India have a rich local health care tradition, which has been in practice for the past hundreds of years. The present study (...) documents the Ethnomedicinal uses of 54 medicinal and aromatic plants (MAPs) along with their botanical and vernacular names, family, habit, habitat, threat status, collection season, purpose of collection, quantity, conservation practices, market potential and part(s) used in traditional health care system. The documented species belonging to 38 families have been used to cure more than 47 different kinds of ailments. These MAPs collected from the wild in a particular season and used as per the method prescribed by traditional herbal healers (Vaidyas) that provide effective results. Perception of local people during field trips based on socio-demographic characters showed them to prefer herbal system of treatments and they understood the status of traditional health care systems in the region. The study reveals that approximately 70 % population of the study area depend on herbal systems of treatments and preferred to visit Vaidyas for curing a variety of ailments because the traditional system of medicine is one of the most important prevailing systems in the region where modern health care facilities are rare or in very poor conditions. The organic cultivation practices of selected MAPs were demonstrated to rural inhabitants through capacity building training program and participatory action research framework approaches for sustainability and enhancement of livelihood security. A series of workshops and village level meetings on traditional health care systems were organized and forming/registered a strong association of Vaidyas for making their traditional system of health care more practical and effective. The study emphasizes the potentials of the ethnomedicinal research, conservation practices, socio-cultural and religious ethics for promoting traditional plants based treatments and also the need to document the indigenous knowledge for scientific validation before its industrial application. (shrink)

Objective: To determine whether the marks in the third year Objective Structured Clinical Examination were affected by the collusion reported by the students themselves on an electronic discussion board.Design: A review of the student discussion, examiners’ feedback and a comparison of the marks obtained on the 2 days of the OSCE.Participants: 255 third year medical students.Setting: An OSCE consisting of 15 stations, administered on three sites over 2 days at a UK medical school.Results: 40 students contributed to the discussion on (...) the electronic discussion board. The main points raised were perceived inequity between students who did, or did not, have prior knowledge of the station content, and the lack of honesty and professionalism of their peers. Most contributors claimed to have received, or knew of others receiving, prior knowledge, but none confessed to passing on information. No significant difference was observed in the overall mark for the OSCE on day 1 ) and day 2 ). On day 2, marks were considerably greater for four stations and markedly lower for three stations. It was not obvious why collusion should affect these station marks. A clear indication of the effects of collusion could only be obtained from a single subsection of an individual station where 82 students on day 2 incorrectly gave the diagnosis from day 1.Conclusion: Marks do not provide a sound inference of student collusion in an OSCE and may mask the aspects of professional development of students. (shrink)

Achieving space situational awareness requires, at a minimum, the identification, characterization, and tracking of space objects. Leveraging the resultant space object data for purposes such as hostile threat assessment, object identification, and conjunction assessment presents major challenges. This is in part because in characterizing space objects we reference a variety of identifiers, components, subsystems, capabilities, vulnerabilities, origins, missions, orbital elements, patterns of life, operational processes, operational statuses, and so forth, which tend to be defined in highly heterogeneous and sometimes inconsistent (...) ways. The Space Domain Ontologies are designed to provide a consensus-based realist framework for formulating such characterizations in a way that is both consistent and computable. Space object data are aligned with classes and relations in a suite of ontologies built around the existing Space Object Ontology. They are stored in a dynamically updated Resource Description Framework triple store, which can be queried to support space situational awareness and the needs of spacecraft operators and analysts. This paper provides an overview of the Space Domain Ontologies and their development and use. It presents the motivation for and advantages of the Space Domain Ontologies, including the benefits they provide for enhancing and maintaining long-term space situational awareness. (shrink)

Decompressive craniectomy is a technically straightforward procedure whereby a large section of the cranium is temporarily removed in cases where the intracranial pressure is dangerously high. While its use has been described for a number of conditions, it is increasingly used in the context of severe head injury. As the use of the procedure increases, a significant number of patients may survive a severe head injury who otherwise would have died. Unfortunately some of these patients will be left severely disabled; (...) a condition likened to the RUB, an acronym for the Risk of Unacceptable Badness. Until recently it has been difficult to predict this outcome, however an accurate prediction model has been developed and this has been applied to a large cohort of patients in Western Australia. It is possible to compare the predicted outcome with the observed outcome at 18 months within this cohort. By using predicted and observed outcome data this paper considers the ethical implications in three cases of differing severity of head injury in view of the fact that it is possible to calculate the RUB for each case. (shrink)

Background: Many people participating in dementia research may lack capacity to give informed consent and the relationship between cognitive function and capacity remains unclear. Recent changes in the law reinforce the need for robust and reproducible methods of assessing capacity when recruiting people for research.Aims: To identify numbers of capacitous participants in a pragmatic randomised trial of dementia treatment; to assess characteristics associated with capacity; to describe a legally acceptable consent process for research.Methods: As part of a pragmatic randomised controlled (...) trial of Ginkgo biloba for mild-moderate dementia, we used a consenting algorithm that met the requirements of existing case law and the exigencies of the new Mental Capacity Act. We decided who had capacity to give informed consent for participation in the trial using this algorithm and sought predictors of capacity.Results: Most participants with mild-moderate dementia in this trial were unable to give informed consent according to the legal criteria. When adjusted for confounding, the Mini Mental State examination did not predict the presence of capacity.Conclusion: Cognitive testing alone is insufficient to assess the presence of capacity. Researchers and clinicians need to be aware of the challenging processes regarding capacity assessment. We outline a procedure which we believe meets the ethical and legal requirements. (shrink)

The rule of rescue describes the powerful human proclivity to rescue identified endangered lives, regardless of cost or risk. Deciding whether or not to perform a decompressive craniectomy as a life-saving or ‘rescue’ procedure for a young person with a severe traumatic brain injury provides a good example of the ethical tensions that occur in these situations. Unfortunately, there comes a point when the primary brain injury is so severe that if the patient survives they are likely to remain severely (...) disabled and fully dependent. The health resource implications of this outcome are significant. By using a web-based outcome prediction model this study compares the long-term outcome and designation of two groups of patients. One group had a very severe injury as adjudged by the model and the other group a less severe injury. At 18 month follow-up there were significant differences in outcome and healthcare requirements. This raises important ethical issues when considering life-saving but non-restorative surgical intervention. The discussion about realistic outcome cannot be dichotomised into simply life or death so that the outcome for the patient must enter the equation. As in other ‘rescue situations’, the utility of the procedure cannot be rationalised on a mere cost–benefit analysis. A compromise has to be reached to determine at what point either the likely outcome would be unacceptable to the person on whom the procedure is being performed or the social utility gained from the rule of rescue intervention fails to justify the utilitarian value and justice of equitable resource allocation. (shrink)

This study examines the socioeconomic and familial background of Irish Catholic priests born between 1867 and 1911. Previous research has hypothesized that lack of marriage opportunities may influence adoption of celibacy as part of a religious institution. The present study traced data from Irish seminary registries for 46 Catholic priests born in County Limerick, Ireland, using 1901 Irish Census returns and Land Valuation records. Priests were more likely to originate from landholding backgrounds, and with landholdings greater in size and wealth (...) than the local average. Priests were found to originate from families with more sons than the national average, but with similar numbers of daughters. These findings are discussed in relation to competition for resources and lineage survival strategies. (shrink)

A case study is presented of the development of computer-based support tools for power engineers in the electricity supply industry. The objective was to develop an expert system to support witching schedule production. A user-centred approach was followed which led the user community to conclude that a switching schedule production assistant (SSPA) was required which would leave control with the power engineer. Prototype systems were developed and evaluated in user trials which revealed that a significant and more general purpose tool (...) would be a computer generated electricity network display that the engineers could manipulate. The paper concludes that the process of enabling users to evaluate alternative forms of technology can facilitate the development systems that are useful, acceptable and usable. (shrink)

Computer-based logic proofs are a form of unnatural language in which the process and structure of proof generation can be observed in considerable detail. We have been studying how students respond to multimodal logic teaching, and performance measures have already indicated that students' pre-existing cognitive styles have a significant impact on teaching outcome. Furthermore, a large corpus of proofs has been gathered via automatic logging of proof development. This paper applies a series of techniques, including corpus statistical methods, to the (...) proof logs. The results indicate that students' cognitive styles influence the structure of their logical discourse, via their differing methods of handling abstract information in diagrams, and transferring information between modalities. (shrink)

Coastal ecosystems are increasingly dominated by humans. Consequently, the human dimensions of sustainability science have become an integral part of emerging coastal governance and management practices. But if we are to avoid the harsh lessons of land management, coastal decision makers must recognize that humans are one of the more coastally dependent species in the biosphere. Management responses must therefore confront both the temporal urgency and the very real compromises and sacrifices that will be necessary to achieve a sustainable coastal (...) ecosystem, one that is economically feasible, socially just, and ecologically sound. (shrink)

Background: Since the passage of the Patient Self-Determination Act, numerous policy mandates and institutional measures have been implemented. It is unknown to what extent those measures have affected end-of-life care, particularly with regard to the do-not-resuscitate order.Methods: Retrospective cohort study to assess associations of the frequency and timing of DNR orders with advance directive status, patient demographics, physician’s specialty and extent of documentation of discussion on end-of-life care.Results: DNR orders were more frequent for patients on a medical service than on (...) a surgical service and were made earlier in the hospital stay for medicine than for surgical patients . 22.18% of all patients had some form of an advance directive in their chart, yet this variable had no impact on the frequency or timing of DNR ordering. Documentation of DNR discussion was significantly associated with the frequency of DNR orders and the time from DNR to death .Conclusions: The physician’s specialty continues to have a significant impact on the frequency and timing of DNR orders, while advance directive status still has no measurable impact. Additionally, documentation of end-of-life discussions is significantly associated with varying DNR ordering rates and timing. (shrink)

In today’s rapidly merging technological realms, basic necessity and morality of the society is often overlooked. Genetic Engineering, a great leap in human understanding of life sciences with possible impacts on every facet of life, is one such advancement. A technology which tampers with the nature at the DNA level and has the prowess to shuffle genes between distantly or even non-related organisms is bound to have gravid moral implications. Tagged with ecological, economic and bio-safety issues, it is being termed (...) as an imprecise tool, which may cause irreversible damages. Apparently, it has shaken the age old, deeply entrenched ideologies of people around the globe leading to a massive uproar in the society. This synthesis is an attempt to dissect and analyze the ethical and moral repercussions of Genetic Engineering with special reference to Indian scenario. (shrink)

In this article, we present results from a literature review of intrinsic, instrumental, and relational values of nature conducted for the Intergovernmental Science-Policy Platform on Biodiversity and Ecosystem Services, as part of the Methodological Assessment of the Diverse Values and Valuations of Nature. We identify the most frequently recurring meanings in the heterogeneous use of different value types and their association with worldviews and other key concepts. From frequent uses, we determine a core meaning for each value type, which is (...) sufficiently inclusive to serve as an umbrella over different understandings in the literature and specific enough to help highlight its difference from the other types of values. Finally, we discuss convergences, overlapping areas, and fuzzy boundaries between different value types to facilitate dialogue, reduce misunderstandings, and improve the methods for valuation of nature's contributions to people, including ecosystem services, to inform policy and direct future research. © 2023 The Author(s). Published by Oxford University Press on behalf of the American Institute of Biological Sciences. (shrink)

Background: Medical tourism involves patients travelling internationally to receive medical services. This practice raises a range of ethical issues, including potential harms to the patient's home and destination country and risks to the patient's own health. Medical tourists often engage the services of a facilitator who may book travel and accommodation and link the patient with a hospital abroad. Facilitators have the potential to exacerbate or mitigate the ethical concerns associated with medical tourism, but their roles are poorly understood. -/- (...) Methods: 12 facilitators were interviewed from 10 Canadian medical tourism companies. -/- Results: Three themes were identified: facilitators' roles towards the patient, health system and medical tourism industry. Facilitators' roles towards the patient were typically described in terms of advocacy and the provision of information, but limited by facilitators' legal liability. Facilitators felt they played a positive role in the lives of their patients and the Canadian health system and served as catalysts for reform, although they noted an adversarial relationship with some Canadian physicians. Many facilitators described personally visiting medical tourism sites and forming personal relationships with surgeons abroad, but noted the need for greater regulation of their industry. -/- Conclusion: Facilitators play a substantial and evolving role in the practice of medical tourism and may be entering a period of professionalisation. Because of the key role of facilitators in determining the effects of medical tourism on patients and public health, this paper recommends a planned conversation between medical tourism stakeholders to define and shape facilitators' roles. (shrink)