The Medical Research Council National Survey of Health and Development (NSHD) is Britain’s longest-running birth cohort study. From their birth in 1946 until the present day, its research participants, or study members, have filled out questionnaires and completed cognitive or physical examinations every few years. Among other outcomes, the findings of these studies have framed how we understand health inequalities. Throughout the decades and multiple follow-up studies, each year the study members have received a birthday card from the survey staff. (...) Although the birthday cards were originally produced in 1962 as a method to record changes of address at a time when the adolescent study members were potentially leaving school and home, they have become more than that with time. The cards mark, and have helped create, an ongoing evolving relationship between the NSHD and the surveyed study members, eventually coming to represent a relationship between the study members themselves. This article uses the birthday cards alongside archival material from the NSHD and oral history interviews with survey staff to trace the history of the growing awareness of importance of emotion within British social science research communities over the course of the 20th and early 21st centuries. It documents changing attitudes to science’s dependence on research participants, their well-being, and the collaborative nature of scientific research. The article deploys an intertextual approach to reading these texts alongside an attention to emotional communities drawing on the work of Barbara Rosenwein. (shrink)

This article finds firmer evidence than has previously been presented that men are more left-wing than women in older birth cohorts, while women are more left-wing than men in younger cohorts. Analysis of the European Values Study/world Values Survey provides the first systematic test of how processes of modernization and social change have led to this phenomenon. In older cohorts, women are more right-wing primarily because of their greater religiosity and the high salience of religiosity for left-right (...) self-placement and vote choice in older cohorts. In younger, more secular, cohorts, women’s greater support for economic equality and state intervention and, to a lesser extent, for liberal values makes them more left-wing than men. Because the gender gap varies in this way between cohorts, research focusing on the aggregate-level gap between all men and all women underestimates gender differences in left-right self-placement and vote choice. (shrink)

We examine change across U.S. cohorts born between 1920 and 2000 in their probability of having had sex with same-sex partners in the last year and since age 18. Using data from the 1988–2018 General Social Surveys, we explore how trends differ by gender, race, and class background. We find steep increases across birth cohorts in the proportion of women who have had sex with both men and women since age 18, whereas increases for men are less steep. (...) We suggest that the trends reflect an increasingly accepting social climate, and that women’s steeper trend is rooted in a long-term asymmetry in gender change, in which nonconformity to gender norms is more acceptable for women than men. We also find evidence that, among men, the increase in having had sex with both men and women was steeper for black than for white men, and for men of lower socioeconomic status; we speculate that the rise of mass incarceration among less privileged men may have influenced this trend. (shrink)

This paper presents Michael Polanyi’s escape from Berlin to Manchester as part of a major wave of intellectual migration at the time of Hitler’s rise in Germany in 1933. Many émigré scientists and social scientists from Hungary experienced forced and unexpected relocation twice in the interwar era: first in 1919-20, after the fall of the Bolshevik-type Hungarian Republic of Councils, and again after the Nazi takeover. Once in exile, they formed an unusually tight support group assisting each other by cohorting, (...) networking, and bonding. Their group included a host of major refugee scientists, scholars, visual artists, musicians, men of letters, and public figures. The rich Hungarian contribution to German and, later, U.S. culture and civilization was, to a very great extent, the result of anti-Semitic policies and practices in Hungary after 1920 and in Germany after 1933. (shrink)

Dr. Rice Holmes has thrown a flood of light on innumerable passages in Caesar's Commentaries, but in one small matter he has, as I hope to show, darkened counsel. In his recent work on the Roman Republic and the founder of the Empire his anxiety to retain the MSS. reading III. in Caesar , ‘Mittit … in Siciliam Curionem pro praetore cum legionibus III.,’ leads him to pervert or neglect the plain meaning of other passages in Caesar. He holds that (...) ‘Curio was not sent to Sicily with any legions,’ and that the ‘Domitian cohorts,’ which Caesar says he sent to Sicily straightway from Corfinium, are identical with the three legions which Caesar says he sent with Curio from Brundisium. Dr. Holmes believes that this was what Caesar really meant, though he expressed himself loosely. Let us see how it agrees with Caesar's other statements. (shrink)

We explore the notion that culture influences people’s values, and their subsequent ideologies and ethical behaviors. We present the idea that culture itself changes with time, and explore the influence of culture and generational markers on consumer ethics by examining differences in these ethical dimensions between Australians, Indonesians, and Indonesian Migrants in Australia, as well as differences between Generation X versus Generations Y and Z. The present study addresses the need to investigate the role that culture plays in consumer ethics, (...) and the interaction between culture and generational attitudes in determining consumer ethics. Results established a distinct multiculturality in our three cultural samples, including a generational cohort differences. This suggests that culture and generational markers influence ethical beliefs, ideologies, and consumer ethics. It further indicates that Indonesian Migrants have acculturated to Australian society both in terms of their values and consumer behaviors, illustrating a crossvergence effect; scores indicate that these Migrants have the highest cultural intelligence among our samples. Implications of the findings for consumer ethics theory and practice are considered and future directions identified. (shrink)

As biomedical citizen science initiatives become more prevalent, the unique ethical issues that they raise are attracting policy attention. One issue identified as a significant concern is the ethical oversight of bottom-up biomedical citizen science projects that are designed and executed primarily or solely by members of the public. That is because the federal rules that require ethical oversight of research by institutional review boards generally do not apply to such projects, creating what has been called an ethics gap. -/- (...) Working to close this gap, practitioners and scholars have considered new mechanisms of ethical oversight for biomedical citizen science. To date, however, participants’ attitudes about ethics and oversight preferences have not been systematically examined. This information is useful to efforts to develop ethical oversight mechanisms because it provides a basis for evaluating the likely effectiveness of specific features of such mechanisms and their acceptability from the perspective of biomedical citizen scientists. -/- Here, we report data from qualitative interviews with 35 stakeholders in bottom-up biomedical citizen science about their general ethics attitudes and preferences regarding ethical oversight. Interviewees described ten ethical priorities and endorsed oversight mechanisms that are voluntary, community-driven, and offer guidance. Conversely, interviewees rejected mechanisms that are mandatory, hierarchical, and inflexible. Applying these findings, we conclude that expert consultation and community review models appear to align well with ethical priorities and oversight preferences of many biomedical citizen scientists, although local conditions should guide the development and use of mechanisms in specific communities. (shrink)

Background Dynamic consent has been proposed as a process through which participants and patients can gain more control over how their data and samples, donated for biomedical research, are used, resulting in greater trust in researchers. It is also a way to respond to evolving data protection frameworks and new legislation. Others argue that the broad consent currently used in biobank research is ethically robust. Little empirical research with cohort study participants has been published. This research investigated the participants’ opinions (...) of adding a dynamic consent interface to their existing study. Methods Adult participants in the Extended Cohort for E-health, Environment and DNA longitudinal cohort study who are members of the EXCEED Public and Participant Engagement Group were recruited. Four focus groups were conducted and analysed for thematic content. Discussion topics were derived from a review of the current literature on dynamic consent. Results Participants were in favour of many aspects of a dynamic consent interface, such as being able to update their information, add additional data to their records and choose withdrawal options. They were supportive provided it was simple to use and not intrusive. Participants expressed a markedly high level of trust in the study and its investigators and were unanimously happy with their current participation. No strong support was found for adding a dynamic consent interface to EXCEED. Conclusions Trust in the study researchers was the strongest theme found. Openness and good data security were needed to retain their trust. While happy to discuss dynamic consent, participants were satisfied with the current study arrangements. There were indications that changing the study might unnecessarily disturb their trust. This raised the question of whether there are contexts where dynamic consent is more appropriate than others. This study was limited by the small number of participants who were committed to the study and biased towards it. More research is needed to fully understand the potential impact of adding a dynamic consent interface to an existing cohort study. (shrink)

The axiom of extensionality of set theory states that any two classes that have identical members are identical. Yet the class of persons age i at time t and the class of persons age i + 1 at t + l, both including same persons, possess different demographic attributes, and thus appear to be two different classes. The contradiction could be resolved by making a clear distinction between age groups and cohorts. Cohort is a multitude of individuals, which is (...) constituted within a time interval, and endures throughout part of the time continuum. Age group, on the other hand, is only a reference term to which empirical measurement relates, as in birth or death rates. Accordingly, the two concepts, age group i at t, and age group i + 1 at t + 1, are different. The standard population growth model of Leslie and Lotka, however, does not support such a distinction in age groups. An alternative model, proposed recently, implies precisely such a distinction. (shrink)

This article describes a number of human cohort studies based on the concept of brain‐science and education. These studies assess the potential effects of new technologies on babies, children and adolescents, and test hypotheses drawn from animal and genetic case studies to see if they apply to people. A flood of information, virtual media, individualism and the pursuit of efficiency might be transforming our brain and its functions. An environmental assessment from the metaphysical aspect could be essential to providing an (...) appropriate environment for future generations. (shrink)

Background There is continued need for enhanced medical ethics education across the United States. In an effort to guide medical ethics education reform, we report the first interprofessional survey of a cohort of graduate medical, nursing and allied health professional students that examined perceived student need for more formalized medical ethics education and assessed preferences for teaching methods in a graduate level medical ethics curriculum. Methods In January 2018, following the successful implementation of a peer-led, grassroots medical ethics curriculum, student (...) leaders under faculty guidance conducted a cross-sectional survey with 562 of 1357 responses received among students enrolled in the School of Medicine, College of Nursing, Doctor of Physical Therapy and BS/ MD Professional Scholars programs at The Medical College of Georgia at Augusta University. An in person or web-based questionnaire was designed to measure perceived need for a more in-depth medical ethics curriculum. Results The majority of respondents were female, white and mid-20s in age. Almost half of respondents reported no prior medical ethics exposure or training in their previous educational experience, while 60% of students across all degree programs reported an interest in more medical ethics education and 92% noted that an understanding of medical ethics was important to their future career. Over a quarter of students were interested in pursuing graduate-level training in medical ethics, with case-based discussions, small group peer settings and ethics guest lectures being the most desired teaching methods. Conclusions The future physician, nursing and physical therapist workforce in our medical community demonstrated an unmet need and strong interest for more formal medical ethics education within their current coursework. Grassroots student-driven curricular development and leadership in medical ethics can positively impact medical education. Subsequent integration of interprofessional training in medical ethics may serve as a vital curricular approach to improving the training of ethically competent healthcare professionals and overcoming the current hierarchical clinical silos. (shrink)

The ways in which partners manage their money provide important clues to gender inequality in and the nature of couple relationships. Analyzing data from nationally representative surveys, I examine changes across British cohorts born between the 1920s and 1990s in their household financial management, and how the changes vary across individuals and couples occupying differential income positions. The results show divergent, nuanced cohort trends toward gender equality in couples’ money management. Across successive cohorts of low-earning women, there has (...) been a subtle relaxation in the form of male control, reflected in a decrease in the proportion of men adopting “back-seat” management by retaining the majority of the couple’s money while delegating the chore of managing daily expenses to their partners. By contrast, the empowerment of high-earning women is reflected primarily in an individualization of financial management, evident in a cohort decrease in joint financial management and an increase in independent management. The trend of individualization is particularly prominent among couples in which both partners have equally high earnings. The findings provide new insights into and important extensions of the theorization of gender relations in and the individualization of couple relationships. (shrink)

Examining alumni perspectives from three multi-term service-learning programs, this study highlights the dimensions of the cohort experience that alumni credit as critical to their learning and dev...

According to most academics, different generations share common characteristics. This undoubtedly helps to better understand their behavior in different scenarios, predicting their responses. However, this seems questionable and that is the main purpose of this study. This research, although preliminary, try to confirm if millennials have common characteristics, or if, on the contrary, there are differences between them due to the culture in which they are immersed. To this end, it has been contextualized in a sector that is very sensitive (...) to cultural differences, such as tourism. Data collection was carried out through a questionnaire administered in 2019 via e-mail to young South Korean and Spanish millennials. The results suggest that there do not appear to be common personality traits between the countries analyzed. The differences between the two groups for most personality traits and travel motivations were significant. The findings of this research provide several practical implications since it will make possible a more appropriate management of the tourist destination. (shrink)

Nel corso degli ultimi 20 anni c’è stata una espansione globale in materia di istruzione dottorale e in particolare di ‘dottorati professionali’. Difficoltà nell’avanzamento e nel completamento diventano sempre più il centro dell’attenzione per tutti i tipi di dottorato. È stato riconosciuto che una serie di fattori al di là di quelli prettamente demografici potrebbe influire sulla possibilità di completare gli studi. C’è ancora molto da imparare sul motivo per cui l’avanzamento e il completamento del dottorato sono così impegnativi. In (...) questo articolo vorremmo mettere in evidenza un settore che sembra trascurato dalla ricerca: l’esperienza emotivamente complessa del percorso di dottorato.Offriamo un contributo al dibattito su ciò che è necessario per facilitare il successo e intrinsecamente un soddisfacente avanzamento all’interno di un programma di dottorato professionale. Noi sosteniamo che una maggiore attenzione debba essere prestata al cammino esperienziale di studenti di dottorato dal momento che essi hanno il difficile compito di integrare la loro vita personale, professionale e accademica. Il nostro interesse per le risorse emotive di cui gli studenti possono avvalersi durante il loro percorso di dottorato è iniziato con la progettazione e lo sviluppo del nostro primo dottorato professionale in materia di sanità e cura. Attraverso la nostra iniziale esperienza con due gruppi di studenti, abbiamo riflettuto sullo sviluppo del dottorato professionale, in generale, e trasversalmente a diverse altre discipline, per comprendere meglio come facilitare una buona esperienza di dottorato e una conclusione nei tempi.L’importanza di partecipare all’esperienza emotiva all’interno del complesso percorso di dottorato professionale ci ha portato al concetto di ‘nourished scholarship’ . Si definisce la nozione di ‘nourished scholarship’ come un percorso di apprendimento che lega i valori personali, significativi e attuali, allo sviluppo e al contributo professionale. Tale nutrimento emotivo è caratterizzato da una soddisfacente esperienza di scambio tra il sé, l’apprendimento e la comunità di pratica/studio. La nostra opinione è che tale nutrimento emotivo sia una risorsa fondamentale da cui gli studenti attingono al momento di negoziare le sfide complesse del percorso professionale di dottorato. Al fine di illustrare il significato di ‘nourished scholarship’ descriviamo alcune delle sue dimensioni emotive chiave. Queste dimensioni possono essere agevolate in vari modi, ma qui ne segnaliamo uno in particolare: il sostegno reciproco e la supervisione di gruppo facilitata. Al fine di illustrare le dimensioni della ‘nourished scholarship’ quindi noi riflettiamo su un caso specifico, quello di una coorte di studenti di dottorato professionale. Sono state estratte alcune loro esperienze per illustrare sette dimensioni che sono importanti per contribuire all’esperienza di ‘nourished scholarship’ come una risorsa di sostegno:- Sperimentare i benefici di appartenenza- Aiutarsi vicendevolmente a contenere l’ansia- Vivere la crescente fiducia- Accettare comunanza e unicità- Miglioramento personale, identità professionale e accademica attraverso la chiarificazione dei valori- Sperimentare i benefici di relazionarsi ad una più ampia comunità scientifica- Accettare i ritmi dei tempi in cui ricevere dei tempi attivi.Inoltre, in questo articolo si riflette su come la particolare struttura del programma di dottorato è stata in grado di sostenere lo sviluppo di queste risorse. Ci sono state tre caratteristiche chiave che crediamo siano state fondamentali nel modo in cui il programma è stato progettato e realizzato:a) ‘Cohortness’ in cui gli studenti si impegnano con il programma come un gruppo in viaggio.b) Supervisione di coorte: anche se tutti studiavano diversi argomenti, si è formato un gruppo insieme a due facilitatori accademici per discutere il processo, l’esperienza del percorso e il loro apprendimento.c) Una strategia di valutazione flessibile che permette agli studenti di progredire in modo personale e non lineare.Il valore potenziale di questo articolo per i programmi educativi è che fornisce un quadro per focalizzare l’attenzione sull’importanza del percorso emotivo e sui modi per sostenere la motivazione degli studenti e la resilienza. Noi crediamo che questo quadro abbia un potenziale trasferibile ad altre situazioni in cui tali risorse emotive possono essere importanti.During the past 20 years there has been a global expansion in doctoral education and in particular professional doctorates. Difficulties with progression and completion have increasingly become the focus of attention within both academic and professional contexts. It has been acknowledged that a range of factors, beyond demographics, could be influential in whether students are able to sustain their studies to completion. In this paper we stress the importance of conceptualising professional doctoral studies as a personal, professional and academic journey that is sustained by emotional factors that may need more explicit attention. As such, our contribution is the delineation of a phenomenon that we call ‘nourished scholarship’. We wish to illustrate how such ‘nourished scholarship’ functions as a resource for sustaining motivation and integration through the doctoral journey. We offer seven dimensions that a doctoral programme needs to embody in order to facilitate ‘nourished scholarship’: belonging, containing anxiety, growing confidence, commonality and uniqueness, values clarification, scholarly community, and negotiating the rhythms of receptive and active times. We illustrate these dimensions in the context of a professional doctorate programme that emphasises ‘cohort supervision’ as the primary resource for facilitating such nourished scholarship. We believe that this notion has transferable potential to other provisions where such emotional resources may be important. (shrink)

BackgroundThe potential contribution of community engagement to addressing ethical challenges for international biomedical research is well described, but there is relatively little documented experience of community engagement to inform its development in practice. This paper draws on experiences around community engagement and informed consent during a genetic cohort study in Kenya to contribute to understanding the strengths and challenges of community engagement in supporting ethical research practice, focusing on issues of communication, the role of field workers in 'doing ethics' on (...) the ground and the challenges of community consultation.MethodsThe findings are based on action research methods, including analysis of community engagement documentation and the observations of the authors closely involved in their development and implementation. Qualitative and quantitative content analysis has been used for documentation of staff meetings and trainings, a meeting with 24 community leaders, and 40 large public and 70 small community group meetings. Meeting minutes from a purposive sample of six community representative groups have been analysed using a thematic framework approach.ResultsField workers described challenges around misunderstandings about research, perceived pressure for recruitment and challenges in explaining the study. During consultation, leaders expressed support for the study and screening for sickle cell disease. In community meetings, there was a common interpretation of research as medical care. Concerns centred on unfamiliar procedures. After explanations of study procedures to leaders and community members, few questions were asked about export of samples or the archiving of samples for future research.ConclusionsCommunity engagement enabled researchers to take account of staff and community opinions and issues during the study and adapt messages and methods to address emerging ethical challenges. Field workers conducting informed consent faced complex issues and their understanding, attitudes and communication skills were key influences on ethical practice. Community consultation was a challenging concept to put into practice, illustrating the complexity of assessing information needs and levels of deliberation that are appropriate to a given study. (shrink)

The National Institutes of Health and other federal health agencies are considering establishing a national biobank to study the roles of genes and environment in human health. A preliminary public engagement study was conducted to assess public attitudes and concerns about the proposed biobank, including the expectations for return of individual research results. A total of 141 adults of different ages, incomes, genders, ethnicities, and races participated in 16 focus groups in six locations across the country. Focus group participants voiced (...) a strong desire to be able to access individual research results. Recognizing the wide range of possible research results from a large cohort study, they repeatedly and spontaneously suggested that cohort study participants be given ongoing choices as to which results they received. (shrink)

Research involving minors has been the subject of much ethical debate. The growing number of longitudinal, pediatric studies that involve genetic research present even more complex challenges to ensure appropriate protection of children and families as research participants. Long-term studies with a genetic component involve collection, retention and use of biological samples and personal information over many years. Cohort studies may be established to study specific conditions (e.g. autism, asthma) or may have a broad aim to research a range of (...) factors that influence the health and development of children. Studies are increasingly intended to serve as research platforms by providing access to data and biological samples to researchers over many years. (shrink)

Birth cohort studies can be used not only to generate population-level quantitative data, but also to recompose persons. The crux is how we understand data and persons. Recomposition entails scavenging for various (including unrecognised) data. It foregrounds the perspective and subjectivity of survey participants, but without forgetting the partiality and incompleteness of the accounts that it may generate. Although interested in the singularity of individuals, it attends to the historical and relational embeddedness of personhood. It examines the multiple and complex (...) temporalities that suffuse people’s lives, hence departing from linear notions of the life course. It implies involvement, as well as reflexivity, on the part of researchers. It embraces the heterogeneity and transformations over time of scientific archives and the interpretive possibilities, as well as incompleteness, of birth cohort studies data. Interested in the unfolding of lives over time, it also shines light on meaningful biographical moments. (shrink)

BackgroundEngagement is important within cohort studies for a number of reasons. It is argued that engaging participants within the studies they are involved in may promote their recruitment and retention within the studies. Participant input can also improve study designs, make them more acceptable for uptake by participants and aid in contextualising research communication to participants. Ultimately it is also argued that engagement needs to provide an avenue for participants to feedback to the cohort study and that this is an (...) ethical imperative. This study sought to explore the participants’ experiences and thoughts of their engagement with their birth cohort study.MethodsParticipants were recruited from the Children of the 90s (CO90s) study. Qualitative semi-structured interviews were conducted with 42 participants. The interviews were transcribed verbatim, and uploaded onto Nvivo software. They were then analysed via thematic analysis with a constant comparison technique.ResultsParticipants’ experiences of their engagement with CO90s were broadly based on three aspects: communication they received from CO90s, experiences of ethical conduct from CO90s and receiving rewards from CO90s. The communication received from CO90s, ranged from newsletters explaining study findings and future studies, to more personal forms like annual greeting cards posted to each participant. Ethical conduct from CO90s mainly involved participants understanding that CO90s would keep their information confidential, that it was only involved in ‘good’ ethical research and their expectation that CO90s would always prioritise participant welfare. Some of the gifts participants said they received at CO90s included toys, shopping vouchers, results from clinical tests, and time off from school to attend data collection (Focus) days. Participants also described a temporality in their engagement with CO90s and the subsequent trust they had developed for the cohort study.ConclusionThe experiences of engagement described by participants were theorized as being based on reciprocity which was sometimes overt and other times more nuanced. We further provide empirical evidence of participants’ expectation for a reciprocal interaction with their cohort study while highlighting the trust that such an interaction fosters. Our study therefore provides key insights for other cohort studies on what participants value in their interactions with their cohort studies. (shrink)

IntroductionLittle is known about risk factors for both Long COVID and somatic symptoms that develop in individuals without a history of COVID-19 in response to the pandemic. There is reason to assume an interplay between pathophysiological mechanisms and psychosocial factors in the etiology of symptom persistence.ObjectiveTherefore, this study investigates specific risk factors for somatic symptom deterioration in a cohort of German adults with and without prior SARS-CoV-2 infection.MethodsGerman healthcare professionals underwent SARS-CoV-2 IgG antibody testing and completed self-rating questionnaires at baseline (...) and 21 months later between April 2020 and February 2022. Differences in variables between the time points were analyzed and a regression analysis was performed to predict somatic symptom deterioration at follow-up.ResultsSeven hundred fifty-one adults completed both assessments. Until follow-up, n = 58 had contracted SARS-CoV-2 confirmed by serology. Between baseline and follow-up, signs of mental and physical strain increased significantly in the sample. Symptom expectations associated with COVID-19 and a self-reported history of COVID-19, but not serologically confirmed SARS-CoV-2 infection, significantly predicted somatic symptom deterioration at follow-up. A further predictor was baseline psychological symptom burden.ConclusionsThis study supports a disease-overarching biopsychosocial model for the development of burdensome somatic symptoms during the COVID-19 pandemic and supports research findings that symptom burden may be more related to the psychosocial effects of the pandemic than to infection itself. Future studies on Long COVID should include SARS-CoV-2 negative control groups and consider symptom burden prior to infection in order to avoid an overestimation of prevalence rates. (shrink)

Comprehension and recall of informed consent was assessed after the study closure in the parents/guardians of a birth cohort of children participating in an intensive three-year diarrhoeal surveillance. A structured questionnaire was administered by field workers who had not participated in the study's follow-up protocol. Of 368 respondents, 329 (89.4 per cent) stated that the study was adequately explained during enrolment, but only 159 (43.2 per cent) could recall that it was on diarrhoea. Nearly half (45.9 per cent) of the (...) respondents stated that they would not have participated if free medical treatment was not provided, although the free medical clinic was not offered at enrolment. Spousal approval (82.9 per cent) was the most important factor in the decision to participate. In the multivariate analysis, maternal education was associated with increased awareness about the disease under study: mothers without any formal education had the lowest awareness (OR = 3.47, 95 per cent CI = 1.60–7.51). Despite a high compliance with the study protocol, retention of understanding about the research study was low over a long period of time. Although the local government provides free healthcare in the study area, respondents cited free healthcare as an important reason for participation, highlighting the need for true health equity before meaningful informed consent can be obtained. (shrink)

The graduate course in research ethics in the Graduate School for Integrative Sciences and Engineering at the National University of Singapore consists of a semester long mandatory course titled: “Research Ethics and Scientific Integrity.” The course provides students with guiding principles for appropriate conduct in the professional and social settings of scientific research and in making morally weighted and ethically sound decisions when confronted with moral dilemmas. It seeks to enhance understanding and appreciation of the moral reasoning underpinning various rules (...) and legislative constraints associated with research subjects and procedures. Further, students are trained to critically analyse cases and issues associated with scientific misconduct preparing them to act in a responsible and effective manner should they encounter such cases. The diverse background and training of the cohort also provide a unique setting and opportunity for student-initiated collaborative interdisciplinary learning. This article offers a reflective account of the course and some preliminary insights into learning outcomes. (shrink)

Does feedback of abnormal results affect validity during a longitudinal study?A fundamental requirement of research is that no harm should come to the participants; however, being granted ethical approval for research does not imply that individuals will necessarily benefit from participation.Certain ethical dilemmas become apparent only during the course of a longitudinal cohort study, such as the EarlyBird diabetes study in Plymouth, Devon.1 In this non-intervention study, the aim is to observe children for 12 years, monitoring for early signs of (...) insulin resistance. A substantial volume of data is gathered every 6 months on the children and their parents, relating to lifestyle and indices of metabolic health. …. (shrink)

Domestic violence is one of the most common forms of violence against women. Domestic violence during pregnancy is associated with adverse perinatal and maternal outcomes. We aimed to assess whether domestic violence was associated with mode of delivery, low birthweight and preterm birth in two sites in Nepal. In this prospective cohort study we consecutively recruited 2004 pregnant women during antenatal care at two hospitals between June 2015 and September 2016. The Abuse Assessment Screen was used to assess fear and (...) violence. Having ever experienced either fear or violence was defined as any domestic violence. Obstetric outcomes were obtained from hospital records for 1381 women, selecting singleton pregnancies only. Mode of delivery was assessed as birth by cesarean section or not. A birthweight of less than 2500 g was defined as low birthweight and preterm birth as birth before completion of 37 weeks gestation. Descriptive and multiple logistic regression analyses were performed to assess associations. Twenty percent of the women reported any domestic violence. Among all 1381 women, 37.6% gave birth by cesarean section. Of those women who delivered by cesarean section, 84.7% had an emergency cesarean section. Less than 10% of the babies were born prematurely and 13.5% were born with low birthweight. We found no significant association between exposure to any domestic violence during pregnancy and risk of a low birthweight baby or birth by cesarean section. However, having experienced both violence and fear was significantly associated with giving birth to a preterm infant [aOR 2.33 ]. Domestic violence is common in Nepal. This is a potential risk factor for severe morbidity and mortality in newborns. We found that the risk of having a preterm baby was higher for pregnant women who experienced both fear and violence. This should be recognized by the health sector. In this study, no significant differences were found in the rate of cesarean section nor low birthweight for women who had experienced any domestic violence compared to those who did not. (shrink)

Comprehension and recall of informed consent was assessed after the study closure in the parents/guardians of a birth cohort of children participating in an intensive three-year diarrhoeal surveillance. A structured questionnaire was administered by field workers who had not participated in the study's follow-up protocol. Of 368 respondents, 329 stated that the study was adequately explained during enrolment, but only 159 could recall that it was on diarrhoea. Nearly half of the respondents stated that they would not have participated if (...) free medical treatment was not provided, although the free medical clinic was not offered at enrolment. Spousal approval was the most important factor in the decision to participate. In the multivariate analysis, maternal education was associated with increased awareness about the disease under study: mothers without any formal education had the lowest awareness. Despite a high compliance with the study protocol, retention of understanding about the research study was low over a long period of time. Although the local government provides free healthcare in the study area, respondents cited free healthcare as an important reason for participation, highlighting the need for true health equity before meaningful informed consent can be obtained. (shrink)

Two recent studies have shown a relationship between male height and number of offspring in contemporary developed-world populations. One of them argues as a result that directional selection for male tallness is both positive and unconstrained. This paper uses data from a large and socially representative national cohort of men who were born in Britain in March 1958. Taller men were less likely to be childless than shorter ones. They did not have a greater mean number of children. If anything, (...) the pattern was the reverse, since men from higher socioeconomic groups tended to be taller and also to have smaller families. However, clear evidence was found that men who were taller than average were more likely to find a long-term partner, and also more likely to have several different long-term partners. This confirms the finding that tall men are considered more attractive and suggests that, in a noncontracepting environment, they would have more children. There is also evidence of stabilizing selection, since extremely tall men had an excess of health problems and an increased likelihood of childlessness. The conclusion is that male tallness has been selected for in recent human evolution but has been constrained by developmental factors and stabilizing selection on the extremely tall. (shrink)

This cross-sectional study of three generations of healthcare executives examines whether age cohort is the key determiner of ethical values. Responses to a national survey using the Rokeach Value Survey indicate that, contrary to widely reported beliefs that suggest otherwise, the age cohort groups in this sample exhibit virtually identical value preferences. The concept of career attraction is introduced to explain the similarities in value preference, and it is further suggested that generational differences may be nullified by the homogeneous demands (...) of organizational life in a healthcare setting. Implications for ethical decisionmaking are discussed.Does age cohort affiliation influence healthcare executive values and consequent ethical judgements? The greater body of literature clearly suggests the answer is yes, yet an empirical assessment of the question has never before been reported. The attention given this issue to date has been focused on the generational differences between the three age cohorts in the workplace today: Matures, Boomers, and Generation Xers (1). Defined as a group of people who share a given historical or socially structured life experience, an age cohort is believed to have a relatively stable influence over the decisionmaking of individuals, and serves to distinguish one generation from another (2)(3)(4). Generation X, or GenXers as they are commonly referred to, are comprised of individuals born between 1961 and 1981. Baby Boomers, or Boomers as they are popularly known, are those born between 1943 and 1960. Matures is the name given to characterize the group of people born between born 1925 and 1942. [Birth dates defining generational cohorts vary slightly among multiple sources. The dates used in this study are from Strauss and Howe (1991), though the nomenclature is not.]. (shrink)

Whilst previous observational studies have linked negative thought processes such as an external locus of control and holding negative cognitive styles with depression, the directionality of these associations and the potential role that these factors play in the transition to adulthood and parenthood has not yet been investigated. This study examined the association between locus of control and negative cognitive styles in adolescence and probable depression in young adulthood and whether parenthood moderated these associations. Using a UK prospective population-based birth (...) cohort study: the Avon Longitudinal Study of Parents and Children, we examined the association between external locus of control and negative cognitive styles in adolescence with odds of depression in 4,301 young adults using logistic regression models unadjusted and adjusted for potential confounding factors. Interaction terms were employed to examine whether parenthood moderated these associations. Over 20% of young adults in our sample were at or above the clinical threshold indicating probable depression. For each standard deviation increase in external locus of control in adolescence, there was a 19% higher odds of having probable depression in young adulthood, after adjusting for various confounding factors including baseline mood and different demographic and life events variables. Similarly, for each SD increase in negative cognitive styles in adolescence, there was a 29% higher odds of having probable depression in the adjusted model. We found little evidence that parenthood status moderated the relationship between external locus of control or negative cognitive styles in adolescence and probable depression following adjustment for confounding factors. Effect estimates were comparable when performed in the complete case dataset. These findings suggest that having an external locus of control and holding negative cognitive styles in mid- to late adolescence is associated with an increased likelihood of probable depression in young adulthood. (shrink)

BackgroundThe cognitive outcomes induced by subthalamic nucleus deep brain stimulation (STN-DBS) remain unclear, especially in PD patients with mild cognitive impairment (MCI). This study explored the cognitive effects of STN-DBS in PD patients with MCI.MethodsThis was a retrospective cohort study that included 126 PD patients who underwent STN-DBS; all patients completed cognitive and motor assessments before and at least 6 months after surgery. Cognitive changes were mainly evaluated by the Montreal cognitive assessment (MoCA) scale and the seven specific MoCA domains, (...) including visuospatial/executive function, naming, attention, language, abstract, delayed recall, and orientation. Motor improvement was evaluated by the UPDRS-III. Cognitive changes and motor improvements were compared between PD-MCI and normal cognitive (NC) patients. Logistic regression analyses were performed to explore predictors of post-operative cognitive change.ResultsAt the time of surgery, 61.90% of the included PD patients had MCI. Compared with the PD-MCI group, the PD-NC group had a significantly higher proportion of cases with post-operative cognitive decline during follow-up of up to 36 months (mean 17.34 ± 10.61 months), mainly including in global cognitive function, visuospatial/executive function and attention. Covariate-adjusted binary logistic regression analyses showed that pre-operative global cognitive status was an independent variable for post-operative cognitive decline. We also found that pre-operative cognitive specific function could predict its own decline after STN-DBS, except for the naming and orientation domains.ConclusionPD-MCI patients are at a lower risk of cognitive decline after STN-DBS compared with PD-NC patients. (shrink)

A close observation on the rapid change in the mind of young cohort has been made. Our Surveillance is before and after pandemic periods compels us to re-write some pre-occupied conceptions in the core of Philosophy and Psychology. We have worked on mind-body & mind-soul relationship from three angles that are Medical Science, Psychology and Philosophy. It is seen that the level of confidence is gradually diminishing among the youth due to different impetus and as a result many powerful strengths (...) are going out. Proclamation of human values in a new way must be declared so that we can save a thankful number of creative lives. Discussions have been made on thoughts, distress, medical causes of suicide or suicidal attempts, personality disorders, neuropsychology to open up a new world before the present generation. Each and every characteristics of life has positive impact and here we have tried to establish this fact. Physical and metaphysical aspects are reciprocating our lives and this should be injected in the mind of present generation and an approach can be taken to incorporate the matter in the curriculum right now. We have the intention to explain metaphysical love and its high, intelligent values proclaimed strength of mind of youth to infuse our dear world with great moral values. It may also save the earth from natural decay with their surprising discoveries. (shrink)

Introduction: Motor evoked potentials (MEPs) to transcranial magnetic stimulation are known to be susceptible to several sources of variability. However, conflicting evidences on individual characteristics in relatively small sample sizes have been reported. We investigated the effect of age, height, and sex on MEPs of the motor cortex and spinal roots in a large cohort. Methods: A total of 587 subjects clinically and neuroradiologically intact were included. MEPs were recorded during mild tonic contraction through a circular coil applied over the (...) “hot spot” of the first dorsal interosseous and tibialis anterior muscles, bilaterally. Central motor conduction time (CMCT) was estimated as the difference between MEP cortical latency and the peripheral motor conduction time by cervical or lumbar magnetic stimulation. Peak-to-peak MEP amplitude to cortical stimulation and right-to-left difference of each parameter were also measured. Results: After Bonferroni correction, general linear (multiple) regression analysis showed that both MEP cortical latency and peripheral motor conduction time at four limbs positively correlated with age and height. At lower limbs, an independent effect of sex on the same measures was also observed (with females showing smaller values than males). CMCT correlated with both age (negatively) and height (positively) when analyzed by a single regression; however, with a multiple regression analysis this significance disappeared, due to the correction for the multicollinearity within the dataset. Conclusions: Physical individual features need to be considered for a more accurate and meaningful MEPs interpretation. Both in clinical practice and in research setting, patients and controls should be matched for age, height, and sex. (shrink)

Case-cohort design is a biased sampling method. Due to its cost-effective and theoretical significance, this design has extensive application value in many large cohort studies. The case-cohort data includes a subcohort sampled randomly from the entire cohort and all the failed subjects outside the subcohort. In this paper, the adjustment for the distorted covariates is considered to case-cohort data in Cox’s model. According to the existing adjustable methods of distorted covariates for linear and nonlinear models, we propose estimating the distorting (...) functions by nonparametrically regressing the distorted covariates on the distorting factors; then, the estimators for the parameters are obtained using the estimated covariates. The proof of consistency and being asymptotically normal is completed. For calculating the maximum likelihood estimates of the regression coefficients subject in Cox’s model, a minorization-maximization algorithm is developed. Simulation studies are performed to compare the estimations with the covariates undistorted, distorted, and adjusted to illustrate the proposed methods. (shrink)

BackgroundInformed consent as stipulated in regulatory human research guidelines requires volunteers to be well-informed about what will happen to them in a trial. However, researchers may be faced with the challenge of how to ensure that a volunteer agreeing to take part in a clinical trial is truly informed. This study aimed to find out volunteers’ comprehension of informed consent and voluntary participation in Human Immunodeficiency Virus (HIV) clinical trials during the registration cohort.MethodsWe conducted a qualitative study among volunteers who (...) were enrolled in the registration cohort of HIV clinical trials in Dar es Salaam, Tanzania. A purposive sampling strategy was used to obtain twenty study participants. The data were collected between June and September 2020 using a semi-structured interview guide. In-depth interviews were used to collect the data to obtain deep insights of the individual study participants on the comprehension of informed consent and participation in the clinical trial. A thematic analysis approach was used to analyze the data. Themes and subthemes were supported by the quotes from the participants.ResultsVolunteers described comprehension of informed consent from different perspectives. They reported that various components of the informed consent such as study procedure, confidentiality, risk and benefits were grasped during engagement meetings. Furthermore, the volunteers’ decision to participate in the registration cohort was voluntary. However, trial aspects such as health insurance, free condoms, and medical checkups could have indirectly influenced their reluctance to withdraw from the study.ConclusionEngagement meetings may increase the comprehension of informed consent among potential participants for HIV clinical trials. However, trial incentives may influence participation, and thus future research should focus on the challenges of giving incentives in the study. This will ensure comprehension and voluntary participation in the context of HIV clinical trials. (shrink)

Context: Structural design education in architecture is typically conceived as a scientific subject taught in a lecture format and based on a transactional view of learning. This approach misses opportunities to contribute to and integrate with design-studio-based architectural education. Problem: How can radical constructivism inform a design-based pedagogy of structural design in the context of large cohorts of Chinese learners? Method: The paper outlines how radical constructivist and second order cybernetic perspectives are reflected in an alternative educational approach to (...) structural design. This approach encourages students’ individual learning while negotiating constraints deriving from large cohorts as well as the educational expectations of Chinese learners. Results: Teaching outcomes as well as students’ comments show successes in engaging students in adopting a more personal and active attitude in their learning. Students appreciate and praise learning grounded in experience as well as collaborative, peer-led learning. Challenges remain in establishing a more dialogical learning situation and in supporting individual students’ learning in large student cohorts. Implications: Limitations arise from the constraints imposed by large cohorts, limited manpower and an institutional preference for teaching towards written examinations. The research and teaching development presented are ongoing. This paper may inform educators in the fields of architecture and engineering as well as, more generally, educators who seek to develop their teaching based on a radical constructivist epistemology in the context of large cohorts. Constructivist content: The teaching approach presented links a radical constructivist perspective based on Ernst von Glasersfeld’s work with second-order cybernetics in the context of design-based education. The paper discusses challenges and opportunities for this approach in the context of large cohorts of Chinese learners. (shrink)

BackgroundCritical to conducting high quality research is the ability to attract and retain participants, especially for longitudinal studies. Understanding participant experiences and motivators or barriers to participating in clinical research is crucial. There are limited data on healthy participant experiences in longitudinal research, particularly in low- and middle-income countries. This study aims to investigate quantitatively participant experiences in a South African birth cohort study.MethodsMaternal participant experience was evaluated by a self-administered survey in the Drakenstein Child Health Study, a longitudinal birth (...) cohort study investigating the early life determinants of child health. Pregnant mothers, enrolled during the second trimester, were followed through childbirth and the early childhood years. Satisfaction scores were derived from the participant experience survey and quantitatively analyzed; associations between satisfaction scores and sociodemographic variables were then investigated using a linear regression model.ResultsData were included from 585 pregnant mothers, who had participated in the study for a median time of 16 months. Overall participant satisfaction was high and associated with increased attendance of study visits. Reasons for participating were a belief that involvement would improve their health, their child’s health or the health of family and friends. Potential reasons for leaving the study were inconvenience, not receiving clinical or study results, and unexpected changes in study visits or procedures. Variables associated with higher overall satisfaction scores were no prior participation in research, higher socioeconomic status, less intensive follow-up schedules and having experienced stressful life events in the past year.ConclusionsSatisfaction scores were high and associated with increased visit attendance. Participants’ perceived benefits of study participation, most notably the potential for an improvement in the health of their child, were a significant motivator to enroll and remain in the study. The consistent theme of perceived health benefits as a motivator to join and remain in the study raises the question of whether participation in research results in actual improvements in health. (shrink)