Background Massively parallel sequencing techniques, such as whole exome sequencing (WES) and whole genome sequencing (WGS), may reveal unsolicited findings (UFs) unrelated to the diagnostic aim. Such techniques are frequently used for diagnostic purposes in pediatric cases of developmental delay (DD). Yet policy guidelines for informed consent and return of UFs are not well equipped to address specific moral challenges that may arise in these children’s situations. Discussion In previous empirical studies conducted by our research group, we found that it (...) is sometimes uncertain how children with a DD will develop and whether they could come to possess capacities for autonomous decision-making in the future. Parents sometimes felt this brought them into a Catch-22 like situation when confronted with choices about UFs before undergoing WES in trio-analysis (both the parents’ and child’s DNA are sequenced). An important reason for choosing to consent to WES was to gain more insight into how their child might develop. However, to make responsible choices about receiving or declining knowledge of UFs, some idea of their child’s future development of autonomous capacities is needed. This undesirable Catch-22 situation was created by the specific policy configuration in which parents were required to make choices about UFs before being sequencing (trio-analysis). We argue that this finding is relevant for reconfiguring current policies for return of UFs for WES/WGS and propose guidelines that encompass two features. First, the informed consent process ought to be staged. Second, differing guidelines are required for withholding/disclosing a UF in cases of DD appropriate to the level of confidence there is about the child’s future developmental of autonomous capacities. Conclusion When combined with a dynamic consent procedure, these two features of our guidelines could help overcome significant moral challenges that present themselves in the situations of children undergoing genomic sequencing for clarifying a DD. (shrink)

Despite the reported limited success of conventional treatments and growing evidence of the effectiveness of adult bariatric surgery, weight loss operations for (morbidly) obese children and adolescents are still considered to be controversial by health care professionals and lay people alike. This paper describes an explorative, qualitative study involving obesity specialists, morbidly obese adolescents, and parents and identifies attitudes and normative beliefs regarding pediatric bariatric surgery. Views on the etiology of obesity—whether it should be considered primarily a medical condition or (...) more a psychosocial problem—seem to affect the specialists’ normative opinions concerning the acceptability of bariatric procedures as a treatment option, the parents’ feelings regarding both being able to influence their child’s health and their child being able to control their own condition, and the adolescents’ sense of competence and motivation for treatment. Moreover, parents and adolescents who saw obesity as something that they could influence themselves were more in favor of non-surgical treatment and vice versa. Conflicting attitudes and normative views—e.g., with regard to concepts of disease, personal influence on health, motivation, and the possibility of a careful informed consent procedure—play an important role in the acceptability of bariatric surgery for childhood obesity. (shrink)

Most language learners have difficulties acquiring the phonemes of a second language (L2). Unfortunately, they are often judged on their L2 pronunciation, and segmental inaccuracies contribute to miscommunication. Therefore, we aim to determine how to facilitate phoneme acquisition. Given the close relationship between speech and co-speech gesture, previous work unsurprisingly reports that gestures can benefit language acquisition, e.g., in (L2) word learning. However, gesture studies on L2 phoneme acquisition present contradictory results, implying that both specific properties of gestures and phonemes (...) used in training, and their combination, may be relevant. We investigated the effect of phoneme and gesture complexity on L2 phoneme acquisition. In a production study, Dutch natives received instruction on the pronunciation of two Spanish phonemes, /u/ and /θ/. Both are typically difficult to produce for Dutch natives because their orthographic representation differs between both languages. Moreover, /θ/ is considered more complex than /u/, since the Dutch phoneme inventory contains /u/ but not /θ/. The instruction participants received contained Spanish examples presented either via audio-only, audio-visually without gesture, audio-visually with a simple, pointing gesture, or audio-visually with a more complex, iconic gesture representing the relevant speech articulator(s). Preceding and following training, participants read aloud Spanish sentences containing the target phonemes. In a perception study, Spanish natives rated the target words from the production study on accentedness and comprehensibility. Our results show that combining gesture and speech in L2 phoneme training can lead to significant improvement in L2 phoneme production, but both gesture and phoneme complexity affect successful learning: Significant learning only occurred for the less complex phoneme /u/ after seeing the more complex iconic gesture, whereas for the more complex phoneme /θ/, seeing the more complex gesture actually hindered acquisition. The perception results confirm the production findings and show that items containing /θ/ produced after receiving training with a less complex pointing gesture are considered less foreign-accented and more easily comprehensible as compared to the same items after audio-only training. This shows that gesture can facilitate task performance in L2 phonology acquisition, yet complexity affects whether certain gestures work better for certain phonemes than others. (shrink)

There is a claim that clinical ethics support services (CESS) improve healthcare quality within healthcare organisations. However, there is lack of strong evidence supporting this claim. Rather, the current focus is on the quality of CESS themselves or on individual learning outcomes. In response, this article proposes a theoretical framework leading to empirical hypotheses that describe the relationship between a specific type of CESS, moral case deliberation and the quality of care at the organisational level. We combine insights from the (...) literature on CESS, organisational learning and quality improvement and argue that moral case deliberation causes healthcare professionals to acquire practical wisdom. At the organisational level, where improving quality is a continuous and collective endeavour, this practical wisdom can be aggregated into morisprudence, which is an ongoing formulation of moral judgements across cases encountered within the organisation. Focusing on the development of morisprudence enables refined scrutinisation of CESS-related quality claims. (shrink)

The starting point of the present study is to investigate which environmental factors play a role in the media behavior of ethnic minority youth. To what extent do socio-demographic characteristics influence ownership and use of the media? We also address the role of religion, cultural origin and the cultural distance between ethnic minority youth and indigenous Dutch youth. Three numerically important groups of ethnic minority youth are discussed: Turks, Moroccans and Surinamese. In a survey conducted among Turkish, Moroccan and Surinamese (...) youth aged between 12 and 19, residing in the Netherlands, we investigated which environmental factors play a role in the media behavior of ethnic minority youth. A control group of indigenous Dutch youth was established and likewise exposed to the variables under study. (shrink)

In debates about genetic testing of children, as well as about disclosing unsolicited findings (UFs) of pediatric exome sequencing, respect for future autonomy should be regarded as a prima facie consideration for not taking steps that would entail denying the future adult the opportunity to decide for herself about what to know about her own genome. While the argument can be overridden when other, morally more weighty considerations are at stake, whether this is the case can only be determined in (...) concrete cases. Importantly, when children grow into adolescents, respect for future autonomy will have to give way to respecting their emerging autonomy. When pediatric exome sequencing is done for complex conditions not involving developmental delay, respect for the child’s future or emerging autonomy should be a primary consideration for those charged with deciding on behalf of the child. Building on what Emanuel and Emanuel have termed the ‘deliberative model’ of shared decision making, we argue that if parents fail to give these considerations their due, professionals should actively invite them to do so. Taking a directive stance may be needed in order to make sure that the future or emerging autonomy of the child are duly considered in the decision-making process, but also to help the parents and themselves to shape their respective roles as responsible care-givers. (shrink)

Within current debates about the future impact of Artificial Intelligence on human society, roughly three different perspectives can be recognised: the technology-centric perspective, claiming that AI will soon outperform humankind in all areas, and that the primary threat for humankind is superintelligence; the human-centric perspective, claiming that humans will always remain superior to AI when it comes to social and societal aspects, and that the main threat of AI is that humankind’s social nature is overlooked in technological designs; and the (...) collective intelligence-centric perspective, claiming that true intelligence lies in the collective of intelligent agents, both human and artificial, and that the main threat for humankind is that technological designs create problems at the collective, systemic level that are hard to oversee and control. The current paper offers the following contributions: a clear description for each of the three perspectives, along with their history and background; an analysis and interpretation of current applications of AI in human society according to each of the three perspectives, thereby disentangling miscommunication in the debate concerning threats of AI; and a new integrated and comprehensive research design framework that addresses all aspects of the above three perspectives, and includes principles that support developers to reflect and anticipate upon potential effects of AI in society. (shrink)

The present study shows that the Internet functions as a gratifying context for the exchange of knowledge and values related to religious matters among youngsters in the Netherlands; they are in the midst of constructing a religious identity. Systematic content analysis complemented by qualitative research was carried out on Maroc.nl, a discussion forum primarily aimed at Moroccan youth. Inspired by Kemper's definitions of experiencing Islam, the recurrence of six dimensions of religious experience was looked into in 1,354 online messages. The (...) purpose of this study is to gain insight into the nature and the relative visibility of each of these dimensions in the online discussions under study. In addition, a number of context-bound and issue-related characteristics of the message were assessed through qualitative analysis, in an effort to find out what key issues were mainly dealt with, what normative statements were made, and how the informants related to one another. (shrink)

We study the effect of scarcity on decision making by low income Swedes. We exploit the random assignment of welfare payments to study their borrowing decisions within the pawn and mainstream credit market. We document that higher educated borrowers borrow less frequently and choose lower loan to value ratios when their budget constraints are exogenously tighter. In contrast, low-educated borrowers do not respond to temporary elevated levels of scarcity. This lack of response translates into a significantly higher probability to default (...) and an 11.6% increase in borrowing cost. We show that a difference in access to liquidity and/or buffer stocks cannot explain our results. Instead a framework, where the awareness of self-control problems is positively correlated with education can explain that high-educated consumers choose a lower LTV as a commitment device to increase their likelihood to repay. Analogously, low-educated with less awareness of their future self-control problems, do not tie themselves to the mast and thus ignore the consequences of their credit decisions when focusing on solving acute liquidity problems. Our findings highlight that increased levels of scarcity risk reinforcing the conditions of poverty through overborrowing. (shrink)

The COVID-19 pandemic has forced developmental researchers to rethink their traditional research practices. The growing need to study infant development at a distance has shifted our research paradigm to online and digital monitoring of infants and families, using electronic devices, such as smartphones. In this practical guide, we introduce the Experience Sampling Method – a research method to collect data, in the moment, on multiple occasions over time – for examining infant development at a distance. ESM is highly suited for (...) assessing dynamic processes of infant development and family dynamics, such as parent-infant interactions and parenting practices. It can also be used to track highly fluctuating family dynamics and routines. The aim of the current paper was to provide an overview by explaining what ESM is and for what types of research ESM is best suited. Next, we provide a brief step-by-step guide on how to start and run an ESM study, including preregistration, development of a questionnaire, using wearables and other hardware, planning and design considerations, and examples of possible analysis techniques. Finally, we discuss common pitfalls of ESM research and how to avoid them. (shrink)

There have been few empirical studies into what non-medical factors influence physicians and nurses when deciding about admission and discharge of ICU patients. Information about the attitudes of healthcare professionals about this process can be used to improve decision-making about resource allocation in intensive care. To provide insight into ethical problems that influence the ICU admission and discharge process, we aimed to identify and explore ethical dilemmas healthcare professionals are faced with.

As part of the Dutch national science program “Professional Games for Professional Skills” we developed a stress-exposure biofeedback training in virtual reality for the Dutch police. We aim to reduce the acute negative impact of stress on performance, as well as long-term consequences for mental health by facilitating physiological stress regulation during a demanding decision task. Conventional biofeedback applications mainly train physiological regulation at rest. This might limit the transfer of the regulation skills to stressful situations. In contrast, we provide (...) the user with the opportunity to practice breathing regulation while they carry out a complex task in VR. This setting poses challenges from a technical – as well as from a user-experience perspective. We illustrate how we approach these challenges in our training and hope to contribute a useful reference for researchers and developers in academia or industry who are interested in using biosignals to control elements in a dynamic virtual environment. (shrink)

Van Vugt, van der Velde, and collaborators show how cognitive architectures can implement verbal theories of psychiatric problems. They show how one theory of depressive rumination can be implemented in the ACT‐R cognitive architecture by changing the contents of its simulated memory. These manipulations of memory habits lead the model to show impairments in a sustained attention task‐‐a plausible impairment given that people who suffer from depression have concentration complaints.

The goal of cognitive modeling is to build faithful simulations of human cognition. One of the challenges is that multiple models can often explain the same phenomena. Another challenge is that models are often very hard to understand, explore, and reuse by others. We discuss some of the solutions that were discussed during the 2015 International Conference on Cognitive Modeling.

BackgroundVarious forms of Clinical Ethics Support (CES) have been developed in health care organizations. Over the past years, increasing attention has been paid to the question of how to foster the quality of ethics support. In the Netherlands, a CES quality assessment project based on a responsive evaluation design has been implemented. CES practitioners themselves reflected upon the quality of ethics support within each other’s health care organizations. This study presents a qualitative evaluation of this Responsive Quality Assessment (RQA) project.MethodsCES (...) practitioners’ experiences with and perspectives on the RQA project were collected by means of ten semi-structured interviews. Both the data collection and the qualitative data analysis followed a stepwise approach, including continuous peer review and careful documentation of the decisions.ResultsThe main findings illustrate the relevance of the RQA with regard to fostering the quality of CES by connecting to context specific issues, such as gaining support from upper management and to solidify CES services within health care organizations. Based on their participation in the RQA, CES practitioners perceived a number of changes regarding CES in Dutch health care organizations after the RQA: acknowledgement of the relevance of CES for the quality of care; CES practices being more formalized; inspiration for developing new CES-related activities and more self-reflection on existing CES practices.ConclusionsThe evaluation of the RQA shows that this method facilitates an open learning process by actively involving CES practitioners and their concrete practices. Lessons learned include that “servant leadership” and more intensive guidance of RQA participants may help to further enhance both the critical dimension and the learning process within RQA. (shrink)

It is widely recognized that police performance may be hindered by psychophysiological state changes during acute stress. To address the need for awareness and control of these physiological changes, police academies in many countries have implemented Heart-Rate Variability biofeedback training. Despite these trainings now being widely delivered in classroom setups, they typically lack the arousing action context needed for successful transfer to the operational field, where officers must apply learned skills, particularly when stress levels rise. The study presented here aimed (...) to address this gap by training physiological control skills in an arousing decision-making context. We developed a Virtual-Reality breathing-based biofeedback training in which police officers perform deep and slow diaphragmatic breathing in an engaging game-like action context. This VR game consisted of a selective shoot/don’t shoot game designed to assess response inhibition, an impaired capacity in high arousal situations. Biofeedback was provided based on adherence to a slow breathing pace: the slower and deeper the breathing, the less constrained peripheral vision became, facilitating accurate responses to the in-game demands. A total of nine male police trainers completed 10 sessions over a 4-week period as part of a single-case experimental ABAB study-design. Results showed that eight out of nine participants showed improved breathing control in action, with a positive effect on breathing-induced low frequency HRV, while also improving their in-game behavioral performance. Critically, the breathing-based skill learning transferred to subsequent sessions in which biofeedback was not presented. Importantly, all participants remained highly engaged throughout the training. Altogether, our study showed that our VR environment can be used to train breathing regulation in an arousing and active decision-making context. (shrink)

In this issue of topiCS, we present the best papers from the ICCM meeting. These best papers represent advances in the state of the art in cognitive modeling. Since ICCM was for the first time also held jointly with the Society for Mathematical Psychology, we use this preface to also reflect on the similarities and differences between mathematical psychology and cognitive modeling.

Many compelling examples have recently been provided in which people can achieve impressive epistemic success, e.g. draw highly accurate inferences, by using simple heuristics and very little information. This is possible by taking advantage of the features of the environment. The examples suggest an easy and appealing naturalization of rationality: on the one hand, people clearly can apply simple heuristics, and on the other hand, they intuitively ought do so when this brings them high accuracy at little cost.. The ‘ought-can’ (...) principle is satisfied, and rationality is meaningfully normative. We show, however, that this naturalization program is endangered by a computational wrinkle in the adaptation process taken to be responsible for this heuristics-based (‘ecological’) rationality: for the adaptation process to guarantee even minimal rationality, it requires astronomical computational resources, making the problem intractable. We consider various plausible auxiliary assumptions in attempt to remove this obstacle, and show that they do not succeed; intractability is a robust property of adaptation. We discuss the implications of our findings for the project of naturalizing rationality. (shrink)

Kolbe and de Melo-Martin (2023) provide a much needed reflection on the methods by which we measure moral distress. Their analysis, however, gives off the impression that the measures of moral dist...

We are grateful for the thoughtful replies to our article. 1 We are especially encouraged that all respondents agree that it is of value to develop a theoretical framework which helps to study how clinical ethics support services (CESS) induce individual and organisational learning. We have focused on the relations between moral case deliberation (MCD), organisational learning and quality improvement from a predominantly sociological perspective. The goal of our theoretical framework was to establish hypotheses which allow for empirical evaluation of (...) the relation between CESS and quality of care. Two major concerns seem to underly the commentaries: the framework (1) lacks a normative standard which allows for ethical justification of the outcome of repeated MCD, 2 and (2) the focus on morisprudence does not sufficiently emphasise the need for ‘structured, consistent, and facilitated processes for fair and robust moral case deliberation’. 3 In other words, it... (shrink)

Objectives: Childhood cancer is a life-threatening disease that poses significant challenges to the life of the diagnosed child and his/her family members. Based on the ABCX-model, the aim of the current study was to explore the association between family functioning, cancer appraisal and the individual adjustment of patients, parents and siblings. Method: Participants were 60 children with leukemia or non-Hodgkin lymphoma, 172 parents and 78 siblings (115 families). Time since diagnosis varied from zero to 33 months. Patients, parents and siblings (...) completed the Family Environment Scale, Perceived Stress Scale, Situation-Specific Emotional Reactions Questionnaire and Pediatric Quality of Life Inventory/Maudsley Marital Questionnaire. Results: Family functioning and the appraisal of the cancer diagnosis proved to be related to patients’, parents’ and siblings’ cancer-related emotions and quality of life post-diagnosis. In addition, family members differed in their perception of some family functioning domains, the appraisal of the cancer diagnosis, positive feelings and quality of life. Discussion: Our findings led to the conclusion that family functioning and the appraisal of the cancer diagnosis are important for the individual adjustment of patients, parents and siblings when facing a diagnosis of cancer in the child. Differences across members within one family speak to the need of screening all family members and intervening at the level of the family unit. (shrink)

Individuals make decisions under uncertainty every day. Decisions are based on in- complete information concerning the potential outcome or the predicted likelihood with which events occur. In addition, individuals’ choices often deviate from the rational or mathematically objective solution. Accordingly, the dynamics of human decision making are difficult to capture using conventional, linear mathematical models. Here, we present data from a 2-choice task with variable risk between sure loss and risky loss to illustrate how a simple nonlinear dynamical system can (...) be employed to capture the dynamics of human decision making under uncertainty (i.e., multistability, bifurcations). We test the feasibility of this model quantitatively and demonstrate how the model can account for up to 86% of the observed choice behavior. The implications of using dynamical models for explaining the nonlin- ear complexities of human decision making are discussed as well as the degree to which the theory of nonlinear dynamical systems might offer an alternative framework for understanding human decision making processes. (shrink)

BackgroundPregnant people have been overlooked or excluded from clinical research, resulting in a lack of scientific knowledge on medication safety and efficacy during pregnancy. Thus far, both the opportunities to generate evidence-based knowledge beyond clinical trials and the role of pregnant people in changing their status quo have not been discussed. Some scholars have argued that for rare disease patients, for whom, just like pregnant people, a poor evidence base exists regarding treatments, solidarity has played an important role in addressing (...) the evidence gap. This paper explores whether and how the enactment of solidarity among pregnant people can be stimulated to help address the poor evidence base on medications used during pregnancy.MethodWe use the concept of solidarity formulated by Prainsack and Buyx and enrich their concept by providing an account for stimulating the enactment of solidarity. Then we apply this account to the case of pregnant people who use medication.ResultsSolidarity means enacted commitment on the part of an individual to assisting others with whom the person recognizes a similarity in a relevant respect. Although solidarity cannot be imposed, we argue that the empowerment of people is a crucial concept in understanding how solidarity can be stimulated. Empowerment in the context of pregnant people means creating awareness about their status quo, explaining how scientific research can help close the knowledge gap, and how pregnant people can themselves contribute. In particular, how pregnant people can contribute to the collection of health data to strengthen the evidence base for medications used during pregnancy.ConclusionsWe conclude that acting in solidarity can help change the status quo for pregnant people. Furthermore, we argue that the empowerment of pregnant people and other relevant stakeholders is a way to stimulate the enactment of solidarity. The process of empowerment starts by raising awareness about the lack of evidence on medications used during prengnacy and by explaining to pregnant people how they can contribute to changing the way knowledge is being generated by, for example, sharing data on the health effects of medications. (shrink)

Individuals make decisions under uncertainty every day based on incomplete information concerning the potential outcome of the choice or chance levels. The choices individuals make often deviate from the rational or mathematically objective solution. Accordingly, the dynamics of human decision-making are difficult to capture using conventional, linear mathematical models. Here, we present data from a two-choice task with variable risk between sure loss and risky loss to illustrate how a simple nonlinear dynamical system can be employed to capture the dynamics (...) of human decision-making under uncertainty (i.e., multi-stability, bifurcations). We test the feasibility of this model quantitatively and demonstrate how the model can account for up to 86% of the observed choice behavior. The implications of using dynamical models for explaining the nonlinear complexities of human decision-making are discussed, as well as the degree to which nonlinear dynamical systems theory might offer an alternative framework for understanding human decision-making processes. (shrink)

PurposeTo explore the mindfulness practice, its long-term effects, facilitators and barriers, in clinical clerkship students 2 years after participation in an 8-week mindfulness-based stress reduction training.MethodA qualitative study was performed by semi-structured in-depth interviews with 16 clinical clerkship students selected by purposive sampling. Students had participated in a MBSR training 2 years before and were asked about their current mindfulness practice, and the long-term effects of the MBSR training. Thematic analysis was conducted using the constant comparison method. Data saturation was (...) reached after 16 interviews.ResultsMost interviewees were still engaged in regular, predominantly informal, mindfulness practice, although some discontinued mindfulness practice and reported an “unchanged lifestyle.” Three main themes came forward; “focused attention and open awareness” during daily activities as core elements of long-term mindfulness practice; “changes in behavior and coping” that resulted from taking a pause, reflecting, recognizing automatic behavioral patterns and making space for a conscious response; “integration in personal and professional life” by enhanced enjoyment of daily activities, improved work-life-balance and making different career choices. Barriers and facilitators in starting and maintaining mindfulness practice were understanding and intention as “pre-conditions”; practical, personal, and professional factors of students in maintaining practice.ConclusionTwo years after participation in a MBSR training, many interviewees were still engaged in mindfulness practice contributing to both personal and professional changes. In light of the high clerkship demands, MBSR training could be a valuable addition to medical curricula, supporting medical students in developing necessary competencies to become well-balanced professionals. (shrink)