Recruiting research participants based on genetic information generated about them in a prior study is a potentially powerful way to study the functional significance of human genetic variation, but it also presents ethical challenges. To inform policy development on this issue, we conducted a survey of U.S. institutional review board chairs concerning the acceptability of recontacting genetic research participants about additional research and their views on the disclosure of individual genetic results as part of recruitment. Our findings suggest there is (...) unlikely to be a “one-size-fits-all” solution, but rather several ethically acceptable approaches to genotype-driven recruitment, depending on context. Disclosures made during the consent process for the original study and the clinical validity of the results are key considerations. Researchers must be prepared to communicate and answer questions in clear lay language about what is known and not known regarding the role of genetics in their proposed area of research. (shrink)

The overlap and differences between the parallel regulatory systems for research create ample room for confusion and missteps, as discussed by Barbara Bierer and Mark Barnes in their report in this supplement. In practice, beyond the inherent differences in the two systems of regulations themselves, there are many issues that further complicate the application of these regulations. These include the variation in size of the institutions receiving PHS funding, the increased prevalence of multisite research, the allocation of research conduct and (...) oversight to external organizations, and the variability in assignment of human subject protection roles between the IRB and the institution. (shrink)

ABSTRACTMetaphors frequently link negative affect with darkness and associations of this type have been established in several experimental paradigms. Given the ubiquity and strength of these associations, people who prefer dark to light may be more prone to negative emotional experiences and symptoms. A five study investigation couches these ideas in a new theoretical framework and then examines them. Across studies, 1 in 4 people preferred the perceptual concept of dark over the perceptual concept of light. These dark-preferring people scored (...) higher in neuroticism and experienced greater depressive feelings in daily life. Moreover, dark preferences shared a robust relationship with depressive symptoms as well as generalised anxiety symptoms. The results provide novel insights into negative affectivity and extend conceptual metaphor theory in a way that is capable of making individual difference predictions. (shrink)

Objective To assess parental permission for a neonate's research participation using the MacArthur competence assessment tool for clinical research (MacCAT-CR), specifically testing the components of understanding, appreciation, reasoning and choice. Study Design Quantitative interviews using study-specific MacCAT-CR tools. Hypothesis Parents of critically ill newborns would produce comparable MacCAT-CR scores to healthy adult controls despite the emotional stress of an infant with critical heart disease or the urgency of surgery. Parents of infants diagnosed prenatally would have higher MacCAT-CR scores than parents (...) of infants diagnosed postnatally. There would be no difference in MacCAT-CR scores between parents with respect to gender or whether they did or did not permit research participation. Participants Parents of neonates undergoing cardiac surgery who had made decisions about research participation before their neonate's surgery. Methods The MacCAT-CR. Results 35 parents (18 mothers; 17 fathers) of 24 neonates completed 55 interviews for one or more of three studies. Total scores: magnetic resonance imaging (mean 36.6, SD 7.71), genetics (mean 38.8, SD 3.44), heart rate variability (mean 37.7, SD 3.30). Parents generally scored higher than published subject populations and were comparable to published control populations with some exceptions. Conclusions The MacCAT-CR can be used to assess parental permission for neonatal research participation. Despite the stress of a critically ill neonate requiring surgery, parents were able to understand study-specific information and make informed decisions to permit their neonate's participation. (shrink)

Academic dishonesty, including cheating and plagiarism, is on the rise in colleges, particularly among engineering students. While students decide to engage in these behaviors for many different reasons, academic integrity training can help improve their understanding of ethical decision making. The two studies outlined in this paper assess the effectiveness of an online module in increasing academic integrity among first semester engineering students. Study 1 tested the effectiveness of an academic honesty tutorial by using a between groups design with a (...) Time 1- and Time 2-test. An academic honesty quiz assessed participants’ knowledge at both time points. Study 2, which incorporated an improved version of the module and quiz, utilized a between groups design with three assessment time points. The additional Time 3-test allowed researchers to test for retention of information. Results were analyzed using ANCOVA and t tests. In Study 1, the experimental group exhibited significant improvement on the plagiarism items, but not the total score. However, at Time 2 there was no significant difference between groups after controlling for Time 1 scores. In Study 2, between- and within-group analyses suggest there was a significant improvement in total scores, but not plagiarism scores, after exposure to the tutorial. Overall, the academic integrity module impacted participants as evidenced by changes in total score and on specific plagiarism items. Although future implementation of the tutorial and quiz would benefit from modifications to reduce ceiling effects and improve assessment of knowledge, the results suggest such tutorial may be one valuable element in a systems approach to improving the academic integrity of engineering students. (shrink)

BackgroundIn response to COVID-19 pandemic, the Government of Uganda adopted public health measures to contain its spread in the country. Some of the initial measures included refusal to repatriate citizens studying in China, mandatory institutional quarantine, and social distancing. Despite being a public health emergency, the measures adopted deserve critical appraisal using an ethics and human rights approach. The goal of this paper is to formulate an ethics and human rights criteria for evaluating public health measures and use it to (...) reflect on the ethical propriety of those adopted by the government of Uganda to contain the spread of COVID-19.Main bodyWe begin by illustrating the value of ethics and human rights considerations for public health measures including during emergencies. We then summarize Uganda’s social and economic circumstances and some of the measures adopted to contain the spread of COVID-19. After reviewing some of the ethics and human rights considerations for public health, we reflect upon the ethical propriety of some of Uganda’s responses to COVID-19. We use content analysis to identify the measures adopted by the government of Uganda to contain the spread of COVID-19, the ethics and human rights considerations commonly recommended for public health responses and their importance. Our study found that some of the measures adopted violate ethics and human rights principles. We argue that even though some human rights can sometimes be legitimately derogated and limited to meet public health goals during public health emergencies, measures that infringe on human rights should satisfy certain ethics and human rights criteria. Some of these criteria include being effective, strictly necessary, proportionate to the magnitude of the threat, reasonable in the circumstances, equitable, and least restrictive. We reflect on Uganda’s initial measures to combat the spread of COVID-19 and argue that many of them fell short of these criteria, and potentially limit their effectiveness.ConclusionThe ethical legitimacy of public health measures is valuable in itself and for enhancing effectiveness of the measures. Such legitimacy depends on the extent to which they conform to ethics and human rights principles recommended for public health measures. (shrink)

The term ‘communitarianism’ is often identified with ‘altruism’: an individual is taken to be communitarian-minded if he or she is concerned with the well-being of others, and not only with his or her own well-being. While communitarianism may embrace altruism, it is most appositely viewed as having a broader connotation. Consider, for example, the puzzle of voting behaviour, discussed by Amitai Etzioni and many others ). Casting one's vote entails a cost, albeit usually a small one: however, if there are (...) large numbers voting, then one's own vote has a negligible effect on the outcome. An altruist might therefore rationally refrain from voting, since he incurs a cost, and neither he nor anybody else receives a benefit. And yet, millions of people the world over regularly vote in elections. Other examples could also be given. ‘Group-oriented’ behaviour has been the focus of a number of recent studies. C. Clague, for example, examines the roles of guilt and shame in discouraging tax evasion, and informally discusses how social influences may affect the strength of these sentiments. R. Naylor and M. Cripps examine the influence of social custom on individuals' propensity to join trade unions, while P. Nelson argues that in choosing which party to vote for people assign some weight to the preferences of persons they associate with. (shrink)

In the context of the blurring of boundaries between club and theatre, game and theatre, and party and theatre, experiential spectatorship is spilling into the mainstream. This article starts from the recognition of the rapid rise of the experience economy as a turning point in consumer culture towards a specific appeal to the sensory body. The definition of experience in this analysis is key and a distinction is made between experience as it passes moment by moment, erlebnis, and experience as (...) something that is cumulatively built up over time, erfahrung. This paper asks, in a society defined by the crisis of experience, does this rise of the experiential in theatre simply reflect the reduction of experience to a series of consumable sensory moments or is there a mode of experience modelled through performance interaction which moves both beyond this established mode of experience and also beyond the notion of experience as cumulatively formed wisdom? Drawing a parallel between established popular cultural practices of the body and those of the spectator in spectacular promenade performance, Fuerzabruta is used as an illustrative example of popular experiential performance and Hwang’s The Road as an example of experiential performance in which a transformative aesthetic is made possible. (shrink)

A crucial debate currently raging in the fields of cognitive and social science centers around general and specific approaches to understanding the actions of others. When we understand the actions of another person, do we do so on the basis of a general theory of psychology, or on the basis of an effort to place ourselves in the particular position of that specific person? Hans Herbert Kögler and Karsten R. Stueber's Empathy and Agency addresses this other issues vital to current (...) social science in an advanced and diverse analysis of the foundations of social-scientific methodology based on recent cognitive psychology. The book serves as both an introduction to the debate for non-academic audiences and as a catalyst for further discussion for serious theorists. Empathy and Agency provides a solid foundation of the fundamental issues in social and cognitive science, but also presents the most influential paradigms in the field at this time. (shrink)