Lay concepts in informed consent to biomedical research: the capacity to understand and appreciate risk

Persons generally must give their informed consent to participate in research. To provide informed consent persons must be given information regarding the study in simple, lay language. Consent must be voluntary, and persons giving consent must be legally competent to consent and possess the capacity to understand and appreciate the information. This paper examines the relationship between the obligation to disclose information regarding risks and the requirement that persons have the capacity to understand and appreciate the information. There has been insufficient attention to the extent to which persons must be able to understand and appreciate study information in order to have their consent deemed valid when the information is provided in simple, lay language. This paper argues that (1) the capacity to understand and appreciate information that should be deemed necessary to give valid consent should be defined by the capacity of the typical, cognitively normal adult and (2) the capacity of the typical, cognitively normal adult to understand and appreciate the concept of risk is limited. Therefore, (3) all things being equal, potential subjects must possess a limited capacity to understand and appreciate risk to be deemed competent to consent to research participation. (4) In some cases investigators ought to require that persons possess a greater than typical capacity to understand and appreciate risk.     

The evolution of ADHD: a disorder of communication?

Attention deficit hyperactivity disorder (ADHD) is the most commonly diagnosed psychiatric condition. Many believe that the central disability is impaired inhibition, which leads to reduced abilities in social skills, self-control, organization and time management. The behaviors identified by clinicians as problematic--inattention, hyperactivity and impulsivity--have been incorporated into several evolutionary models as selectively adaptive cognitive skills for surviving the challenges of a variable Pleistocene environment. We propose that the "disabilities" exhibited by individuals with ADHD are maladaptive, and we concur with Barkley that there is a central impairment in the behavioral inhibition system. The underlying neural anatomy and physiology support the possibility that neurotransmitter pathology may have an impact on other interlinked systems (including language), and may also account for the frequent comorbidity of aggression, anxiety, depression, and learning disabilities (many of which are language-related). Language skills compete with other cognitive activities for the attentional system, and thus the evolution of language could not in fact be independent of the evolution of attention. If language represents the ultimate expression of the attentional system, and some individuals with ADHD are seriously impaired in the coordination of interlinked neural systems (including language), then ADHD fits Jerome Wakefield's definition of "harmful dysfunction," and communication impairments should be investigated more thoroughly by clinicians.     

ADHD in acute care psychiatric inpatients

Attention-deficit hyperactivity disorder (ADHD) is a neurocognitive disorder characterized by symptoms of inattention, impulsivity and motor hyperactivity. The worldwide prevalence of ADHD, in the general adult population, has been estimated to be 2.8%. Patients with ADHD have a high incidence of comorbidity with other psychiatric disorders. Those with a psychiatric disorder as well as ADHD have more psychosocial difficulties than those without ADHD. Despite knowing that ADHD is often comorbid with other psychiatric diagnoses, there are currently no studies elucidating the prevalence of ADHD in the inpatient psychiatric population, nor is there significant information about its impact. The lack of research into this topic suggests more needs to be done in the field of adult ADHD, especially in the inpatient psychiatric population and with respect to impairment in patient function. Knowing the prevalence of ADHD and its impact on quality of life in adult inpatients will help lay the groundwork for effective screening and management. The purpose of this study was to understand the prevalence rates of ADHD among psychiatric acute care inpatients. Other objectives included comparing the quality of life and functioning between patients with a primary psychiatric diagnosis and ADHD (treated or untreated) versus those with a primary psychiatric diagnosis and no ADHD. Thirty-three (N = 31) psychiatric inpatients were screened using the Adult ADHD Self-Report Scale. Those that screened positive for ADHD received a full diagnostic assessment for ADHD. All patients completed the Weiss Functional Impairment Rating Scale (WFIRS) to assess level of functioning and a Clinical Global Impression of Severity/Improvement Scale (on admission and discharge). Demographic information was also obtained. Of the 31 patients analyzed, 12 had a diagnosis of ADHD (36.4%). The participants diagnosed with ADHD scored significantly higher on the WFIRS, suggesting decreased functioning compared to patients without comorbid ADHD. Patients with ADHD also scored significantly higher in the individual domains of this rating scale, suggesting impairment in family, work and social functioning as well as decreased life-skills, poor self-concept and increased risk-taking behavior. In this sample, the prevalence of ADHD is significantly higher among acute care psychiatric inpatients than in the general population. Patients with concomitant ADHD suffer more functional impairment than those without. These findings merit further investigation into the value of routine screening and patient-specific treatment of ADHD in this patient population.     

Sickle cell trait counseling-evaluation of counselors and counselees.

In this study, information about both counselee and counselor performance was obtained from taped recordings of 193 structured counseling sessions with persons diagnosed as having sickle cell trait. The data provide evidence that: (1) lay persons can understand essential sickle cell information; (2) trained lay persons using a structured format can transmit successfully sickle cell information; (3) only education and age, among counselee characteristics studies, were related to successful learning; (4) the evaluation of information transfer in counseling programs cannot be limited to counselees' comprehension but must also consider other variables such as counselor performance and curriculum content; (5) a reduction in negative feelings associated with a diagnosis of sickle cell trait is an immediate effect of counseling; and (6) audio-taping of counseling sessions is client acceptable and useful for evaluation, quality control, and counselor training.     

Verbal fluency in adults diagnosed with attention-deficit hyperactivity disorder (ADHD) in childhood

It has been increasingly believed that attention-deficit hyperactivity disorder (ADHD) is a disorder with lifelong course associated with cognitive difficulties including among others, language production, verbal learning, and verbal fluency. However, research is limited to children and adolescents, and very few researchers have examined the impact of ADHD in adulthood on the cognitive domain. The aim of the present study is to examine the performance of adults, diagnosed with ADHD in childhood, on semantic and phonemic verbal fluency tasks. It is hypothesized that adults with ADHD will perform worse on both tasks than matched controls. Sixty university students (30 diagnosed with ADHD in childhood and 30 matched controls) of mean age 20.5 participated in the study. They all completed two verbal fluency tasks. The ADHD group had statistically significant lower scores than the non-ADHD group on the phonemic, but not the semantic task. The study provides some evidence that ADHD in childhood has a negative impact on adults’ phonemic verbal fluency. This finding could be probably explained by the fact that phonemic fluency is considered more cognitively demanding and impacting more on the frontal lobe functions, known to be impaired in ADHD, than semantic fluency.     

Association Between Adult Attention Deficit/Hyperactivity Disorder and Obesity in the US Population

Attention deficit hyperactivity disorder (ADHD) is a neurobehavioral disorder that affects ～2.9–4.7% of US adults. Studies have revealed high rates of ADHD (26–61%) in patients seeking weight loss treatment suggesting an association between ADHD and obesity. The objective of the present study was to test the association between ADHD and overweight and obesity in the US population. Cross‐sectional data from the Collaborative Psychiatric Epidemiology Surveys were used. Participants were 6,735 US residents (63.9% white; 51.6% female) aged 18–44 years. A retrospective assessment of childhood ADHD and a self‐report assessment of adult ADHD were administered. Diagnosis was defined by three categories: never met diagnostic criteria, met full childhood criteria with no current symptoms, and met full childhood criteria with current symptoms. The prevalence of overweight and obesity was 33.9 and 29.4%, respectively, among adults with ADHD, and 28.8 and 21.6%, respectively, among persons with no history of ADHD. Adult ADHD was associated with greater likelihood of overweight, (odds ratio (OR) = 1.58; 95% confidence interval (CI) = 1.05, 2.38) and obesity (OR = 1.81; 95% CI = 1.14, 2.64). Results were similar when adjusting for demographic characteristics and depression. Mediation analyses suggest that binge eating disorder (BED), but not depression, partially mediates the associations between ADHD and both overweight and obesity. Results suggest that adult ADHD is associated with overweight and obesity.     

Group differences in the structure of illness

The paper reports an attempt to study in a naturalistic and quantitative fashion the features of illness episodes. Such episodes, as perceived and reported by lay persons, constitute a basic datum in ethnomedicine. Yet, they have rarely been the object of systematic research for theoretical and methodological reasons. The paper discusses ways in which illness episodes have significance in ethnomedicine and in health services research generally, and describes a method which can be used in field situations to study them. The content, internal structure and organization which illness episodes have are given attention by analysing and measuring the components of illness in a panel of adult females who reside in the highland state of Chiapas in Southeastern Mexico. Comparisons are undertaken in the two most dissimilar subgroupings of the region. Some commonalities and group differences in the duration of symptoms and in the way symptoms interrelate are described. An interpretation of these differences is offered, with principal emphasis given to the social circumstances and to the (cultural) meanings of illness in the two groups. The procedure employed, which is consistent with the way in which vital signs are recorded in the hospital, lends itself to field studies of the way symptoms and signs of disease unfold in the individual across time. The idea of a language of illness, which is introduced and developed in the paper, is used to draw emphasis to the communicative and symbolic features of illness.     

From "Easy Phonetics" to the Syllabary: An Orthographic Division of Labor in Cherokee Language Education

Drawing on classroom participant-observation and interviews conducted among the Eastern Band of Cherokee Indians, this article describes the ways in which literacy practices in Cherokee language education perpetuate and teach local categories of knowledge, behavior, and persons. I describe the semiotic functioning of the native-developed Cherokee syllabary, as well as its place among four Cherokee orthographies. This work contributes to our understanding of the multiple functions and meanings of writing systems in use in language education and other cultural contexts, and demonstrates the importance of analyzing the full range of semiotic implications of any particular writing system.     

Lifetime stability of ADHD symptoms in older adults

Attention-deficit/hyperactivity disorder (ADHD) has been shown to continue into old age. Studies in children and younger adults show a reduction in hyperactive-impulsive symptoms, whereas the number of inattentive symptoms stays stable. The current study examined the lifetime stability of ADHD symptoms up to old age. Data on ADHD diagnosis and symptoms were collected in a two-phase side-study (N = 231) of the Longitudinal Aging Study Amsterdam. Paired t tests and ANCOVAs were used to analyze the data. Paired t test suggests continuity of the number of reported ADHD symptoms currently present and present in childhood. The change in the balance of inattentive/hyperactive-impulsive symptoms at present and in childhood is also the same in persons with ADHD. Finally, the difference in the change in the balance of inattentive/hyperactive-impulsive symptoms in those with and without ADHD suggests continuity throughout the life span. Our results suggest that diagnostic criteria developed for younger adults may be used among older adults. However, we collected our data retrospectively, which may have biased our results. Future research should follow larger cohorts of patients with ADHD prospectively over the life span.     

The Blossoming of Ignorance: Uncertainty,Power and Syncretism Amongst Mongolian Buddhists

Discussions of religious ignorance have arisen contemporaneously with postsocialist frustrations and uncertainties in Ulaanbaatar. My interlocutors responded to discourses of Buddhist ignorance in a number of apparently contradictory ways. Mistrust, religious reverence, ambivalence or fear often coexisted with excitement, exploration and creation. Through frequently describing their own or others' ignorance about Buddhism lay Buddhists indicated that Buddhism, and the renewed possibilities of knowledge or ignorance about Buddhism, was a site of considerable importance. Also indicated was a change in Buddhist epistemologies from the pre-socialist era. This article discusses how talk about religious ignorance in Ulaanbaatar presented itself in a variety of complementary and conflicting ways: as a reflection of anxiety over lost traditions, a source of power and deference, and as a blossoming space for hope and religious enthusiasm.     

Language Ideology: The Case of Spanish in Departments of Foreign Languages

In this article we investigate language ideology in a department of Spanish. We are concerned with examining the acquisition and transmission of linguistic culture in departments of foreign languages within university settings and the ways in which views about non-English languages that are part of the American cultural dialogue are maintained and nurtured by educational institutions. Using long-term participant-observation data and focused interviews, we contend that foreign language departments in U.S. colleges and universities, although involved in a nonhegemonic practice—that is, in the teaching of non-English languages—are nevertheless working in concert with deeply held American ideologies about bilingualism and monolingualism.     

Terrains of blood and nation: Haitian transnational social fields

As have a growing number of political leaders of emigrant-sending countries, Haitian government officials and immigrant leaders have envisioned Haiti as a transnational nation-state. This article explores the ways in which the vision of Haiti as a transnational nation builds upon the experiences, needs and aspirations of both persons living in Haiti and those who have settled in the United States. Using a concept of 'transnational social field', we examine how family obligations and the experiences of immigration are understood through a language of blood and descent that links individuals to broader concepts of a transnational homeland. Rather than celebrating transnational connections, this essay concludes by warning that the ideologies which undergird 'long distance nationalism' are problematic.     

ADHD symptoms in healthy adults are associated with stressful life events and negative memory bias

Stressful life events, especially Childhood Trauma, predict ADHD symptoms. Childhood Trauma and negatively biased memory are risk factors for affective disorders. The association of life events and bias with ADHD symptoms may inform about the etiology of ADHD. Memory bias was tested using a computer task in N = 675 healthy adults. Life events and ADHD symptoms were assessed using questionnaires. The mediation of the association between life events and ADHD symptoms by memory bias was examined. We explored the roles of different types of life events and of ADHD symptom clusters. Life events and memory bias were associated with overall ADHD symptoms as well as inattention and hyperactivity/impulsivity symptom clusters. Memory bias mediated the association of Lifetime Life Events, specifically Childhood Trauma, with ADHD symptoms. Negatively biased memory may be a cognitive marker of the effects of Childhood Trauma on the development and/or persistence of ADHD symptoms.     

Stigma in attention deficit hyperactivity disorder

Attention deficit hyperactivity disorder (ADHD) is a frequently diagnosed disorder in child- and adulthood with a high impact affecting multiple facets of social life. Therefore, patients suffering from ADHD are at high risk to be confronted with stigma, prejudices, and discrimination. A review of the empirical research in the field of ADHD with regard to stigma was performed. The findings of investigations in this field were clustered in different categories, including stigma in children with ADHD, stigma in adults with ADHD, stigma in relatives or in people close to a patient with ADHD, and the influence of stigma on authorities' attitudes toward patients with ADHD. Variables identified to contribute to stigma in ADHD are public's uncertainty concerning the reliability/validity of an ADHD diagnosis and the related diagnostic assessment, public's perceived dangerousness of individuals with ADHD, socio-demographical factors as age, gender, and ethnicity of the respondent or the target individual with ADHD, stigmatization of ADHD treatment, for example public's skepticism toward ADHD medication and disclosure of diagnostic status as well as medication status of the individual with ADHD. The contribution of stigma associated with ADHD can be conceptualized as an underestimated risk factor, affecting treatment adherence, treatment efficacy, symptom aggravation, life satisfaction, and mentally well-being of individuals affected by ADHD. Public as well as health professionals' concepts about ADHD are highly diverse, setting individuals with an ADHD diagnosis at greater risk to get stigmatized.     

A Sketch of Language History in the Korean Peninsula

Among 7100 languages spoken on Earth, the Koreanic language is the 13th largest, with about 77 million speakers in and around the Korean Peninsula. In comparison to other languages of similar size, however, surprisingly little is known about the evolution of the Koreanic language. This is mainly due to two reasons. The first reason is that the genealogical relationship of the Koreanic to other neighboring languages remains uncertain, and thus inference from the linguistic comparative method provides only provisional evidence. The second reason is that, as the ancestral Koreanic speakers lacked their own writing system until around 500 years ago, there are scant historical materials to peer into the past, except for those preserved in Sinitic characters that we have no straightforward way of interpreting. Here I attempt to overcome these disadvantages and shed some light on the linguistic history of the Korean Peninsula, by analyzing the internal variation of the Koreanic language with methods adopted from evolutionary biology. The preliminary results presented here suggest that the evolutionary history of the Koreanic language is characterized by a weak hierarchical structure, and intensive gene/culture flows within the Korean Peninsula seem to have promoted linguistic homogeneity among the Koreanic variants. Despite the gene/culture flows, however, there are still three detectable linguistic barriers in the Korean Peninsula that appear to have been shaped by geographical features such as mountains, elevated areas, and ocean. I discuss these findings in an inclusive manner to lay the groundwork for future studies.     

Human plasma glycome in attention-deficit hyperactivity disorder and autism spectrum disorders

Over a half of all proteins are glycosylated, and their proper glycosylation is essential for normal function. Unfortunately, because of structural complexity of nonlinear branched glycans and the absence of genetic template for their synthesis, the knowledge about glycans is lagging significantly behind the knowledge about proteins or DNA. Using a recently developed quantitative high throughput glycan analysis method we quantified components of the plasma N-glycome in 99 children with attention-deficit hyperactivity disorder (ADHD), 81 child and 5 adults with autism spectrum disorder, and a total of 340 matching healthy controls. No changes in plasma glycome were found to associate with autism spectrum disorder, but several highly significant associations were observed with ADHD. Further structural analysis of plasma glycans revealed that ADHD is associated with increased antennary fucosylation of biantennary glycans and decreased levels of some complex glycans with three or four antennas. The design of this study prevented any functional conclusions about the observed associations, but specific differences in glycosylation appears to be strongly associated with ADHD and warrants further studies in this direction.     

Family history interview of a broad phenotype in specific language impairment and matched controls

The aim was to study a broader phenotype of language‐related diagnoses and problems in three generations of relatives of children with specific language impairment (SLI). Our study is based on a family history interview of the parents of 59 children with SLI and of 100 matched control children, exploring the prevalence of problems related to language, reading, attention, school achievement and social communication as well as diagnoses such as attention‐deficit hyperactivity disorder (ADHD), autism, Asperger syndrome, dyslexia, mental retardation, cleft palate and stuttering. The results show a spectrum of language‐related problems in families of SLI children. In all three generations of SLI relatives, we found significantly higher prevalence rates of language, literacy and social communication problems. The risk of one or both parents having language‐related diagnoses or problems was approximately six times higher for the children with SLI (85%) than for the control children (13%) (odds ratio = 37.2). We did not find a significantly higher prevalence of the diagnoses ADHD, autism or Asperger syndrome in the relatives of the children with SLI. However, significantly more parents of the children with SLI had problems with attention/hyperactivity when compared with the parents of controls. Our findings suggest common underlying mechanisms for problems with language, literacy and social communication, and possibly also for attention/hyperactivity symptoms.     

Aesthetics, Intuition, and Reference in Fijian Ritual Communication: Modularity in and out of Language

The ethnographic interpretation of "meaningless" ritual—ritual in which participants are not able to give verbal accounts of the symbolic meanings involved—poses basic questions about the relationships among language, culture, and meaning. Along with verbal meaning expressible in language, rituals are often observed to have important practical meaning outside of language. Aside from basic how-to, facilitating dimensions, practical meaning systems can also constitute metaphor and accomplish reference in ways that are parallel to, yet distinct from, verbal and gestural language functions. Techniques of language analysis are useful in interpreting practical meaning in ritual if language meaning is viewed from the perspective of Wittgensteinian use-based semantics and language is seen in context of a more general multidomain meaning system module that supports the communicative aspects of culture. [Keywords: ritual, aesthetics, communication, ethnography, Fiji]     

Information Gain of Psychophysiological Detection of Deception in Forensic and Screening Settings

We adapted and applied the Wells and Olson’s (2002) Information Gain Analyses to examine the relative usefulness of a common psycho-physiological deception detection (PDD) technique, the Comparison Question Test, in forensic and screening settings as compared to unassisted lay and professional persons. We found that in forensic settings PDD provided substantial improvements in information gain over unassisted laypersons across nearly the complete range of the base rate of guilt. This was true for accuracy estimates based on laboratory and field data. At p(guilt) = 0.9, a benchmark set by critics of PDD, PDD provided 27 times the information gain of credibility decisions made by unassisted lay persons. Analyses of a screening PDD indicated that only deceptive outcomes provide useful information gain at relevant low base rates of guilt. These results strongly support the use of PDD in forensic settings and have implications for how screening PDD results are used.     

Old Jokes and New Multiculturalisms: Continuity and Change in Vernacular Discourse on the Yucatec Maya Language

ABSTRACT  Much recent literature on indigenous identity politics in Latin America has emphasized the emergence of new discourses on ethnic citizenship. However, the ways in which state-sponsored efforts to validate and revitalize the Yucatec Maya language become relevant to rural Yucatecans reflect far more continuity with older local narratives about the relationship between language use and modernity. Situating contemporary engagements with multicultural language policies within a broader history of locally meaningful language practices complicates the general model of indigenous language communities that has informed many recent studies of Latin American identity politics and reframes scholarly debates that have emphasized contrasts between emergent forms of essentialism or purism and more-traditional means of identity formation. This, in turn, suggests new routes through which multicultural and multilingual policies can be conceptualized for heterogeneous communities of indigenous language speakers.