BackgroundWith advances in sequencing technologies, increasing numbers of people are being informed about a genetic disease identified in their family. In current practice, probands are asked to inform at-risk relatives about the diagnosis. However, previous research has shown that relatives are sometimes not informed due to barriers such as family conflicts. Research on family communication in genetic diseases aims to explore the difficulties encountered in informing relatives and to identify ways to support probands in this.Main bodyResearch on family communication may (...) also reveal that participants did not inform their relatives about the risk of a serious genetic condition, even when preventive and treatment options are available. Researchers may then face a dilemma: Do they need to warn at-risk relatives about the finding? Or do they keep silent due to prior confidentiality agreements with study participants?ConclusionsWe believe that the absolute confidence promised to research participants outweighs the interests of their relatives, even though it can be claimed that relatives at risk of a genetic disease do, in principle, have a right to know information collected about their health. Not respecting confidentiality agreements could cause distrust between researchers and research participants and possibly harm the relationship between probands and relatives. Relatives' health interests can still be taken into account without jeopardizing participant trust, by considering alternative scenarios, including sharing general study findings on the barriers participants experience with their healthcare professionals and by offering participants psychosocial support for family communication. (shrink)

In an effort to inform the discussion surrounding existential risks from AI, we formulate Extinction-level Goodhart’s Law as “Virtually any goal specification, pursued to the extreme, will result in the extinction of humanity”, and we aim to understand which formal models are suitable for investigating this hypothesis. Note that we remain agnostic as to whether Extinction-level Goodhart’s Law holds or not. As our key contribution, we identify a set of conditions that are necessary for a model that aims to be (...) informative for evaluating specific arguments for Extinction-level Goodhart’s Law. Since each of the conditions seems to significantly contribute to the complexity of the resulting model, formally evaluating the hypothesis might be exceedingly difficult. This raises the possibility that whether the risk of extinction from artificial intelligence is real or not, the underlying dynamics might be invisible to current scientific methods. (shrink)

Strong relationships have been hypothesized between the timing of marriage and the familial environment of the couple. Sociologists have identified various mechanisms via which the age at marriage in the parental generation might be related to the age at marriage of the children. In our paper we study this relationship for historical populations. We use a dataset consisting of several hundreds of thousands of marriages contracted in three of the 11 Dutch provinces between 1812 and 1922. We identified the generational (...) links between the brides, grooms, their parents, and grandparents. We studied (a) whether there is a relationship between ages at marriage of (grandfathers) fathers and sons, and ages at marriage of (grandmothers) mothers and daughters and (b) whether this relationship might be explained by social class. We find evidence for a clear effect of the family on age at marriage and substantial intergenerational transmission. The impact that the family of origin has on age at entry into marriage can partly be attributed to social class. We also observed positive effects of grandparents’ age at marriage on their offspring’s age at marriage. (shrink)

A letter written by Christiaan Huygens to David Gregory is published here for the first time. After an introduction about the contacts between the two correspondents, an annotated English translation of the letter is given. The letter forms part of the wider correspondence about the ‘new calculus’, in which L'Hospital and Leibniz also participated, and gives some new evidence about Huygens's ambivalent attitude towards the new developments. Therefore, two mathematical passages in the letter are discussed separately. An appendix contains (...) the original Latin text. (shrink)

Many studies have addressed the justice of public land acquisition, but few studies have addressed the question of what landowners perceive as just. Individual perceptions drive an important part of the social and scientific debates on legitimate and just land acquisition. This article addresses this gap by studying landowners’ and land purchasers’ perceptions of just land acquisition. We did this by uncovering the prevailing discourse on just land acquisition and studying the values that shaped people’s perceptions of just land acquisition. (...) The results showed that perceptions of justice are based on the values of lawfulness, decentness and equality. These values were translated into different norms that resulted in expectations pertaining to just land acquisition. Insight into the different perceptions and the prevailing discourse of just land acquisition and their underlying values increases the understanding of land acquisition processes and land policy strategies. First, it becomes apparent that land acquisition has an essential element of injustice that cannot be avoided by a good process or a just compensation fee. Second, insight in different discourses provides valuable input for debates on just land acquisition. Third, such insight shows that money is not always a sufficient means of indemnification. The combination of sufficient financial compensation, the opportunity of a new location, attractive selling conditions and accurate and open process are all important requisites to ensure that public land acquisition is perceived by the majority of landowners as just. (shrink)

The existence of various physical phenomena stems from the concept called asymptotic emergence, that is, they seem to be exclusively reserved for certain limiting theories. Important examples are spontaneous symmetry breaking (SSB) and phase transitions: these would only occur in the classical or thermodynamic limit of underlying finite quantum systems, since for finite quantum systems, due to the uniqueness of the relevant states, such phenomena are excluded by Theory. In Nature, however, finite quantum systems describing real materials clearly exhibit such (...) effects. In this paper we discuss these apparently “paradoxical” phenomena and outline various ideas and mechanisms that encompass both theory and reality, from physical and mathematical points of view. (shrink)

Dijkerman & de Haan (D&dH) propose a somatosensory perceptual pathway that informs a consciously accessible body image, and an action pathway that provides information to a body schema, which is not consciously accessible. We argue that the body schema may become accessible to consciousness in some circumstances, possibly resulting from cross talk, but that this may be detrimental to skilled movement production.

This paper motivates institutional epistemic trust as an important ethical consideration informing the responsible development and implementation of AI technologies (or AI- Inclusivity) in healthcare. Drawing on recent literature on epistemic trust and public trust in science, we examine the conditions under which we can have institutional epistemic trust in AI- inclusive healthcare systems and their members' medical information providers. In particular, we discuss that institutional epistemic trust in AI-inclusive healthcare depends, in part, on the reliability of AI-inclusive medical practices (...) and programs, its knowledge and understanding amongst different stakeholders, its effect on epistemic and communicative duties and burdens on medical professionals, and finally, its interaction with ethical values and interests as well as background socio-political conditions which shape AI-inclusive healthcare systems. To assess the applicability of these conditions, we explore a proposal for AI-inclusivity within the Dutch Newborn Screening Program, thereby illustrating the importance, scope, and potential challenges of fostering and maintaining institutional epistemic trust in a context where generating, assessing, and providing reliable and timely screening results for genetic risk is of high priority. Finally, to motivate the general relevance of our discussion and case study, we provide suggestions for strategies, interventions, and measures for AI-inclusivity in healthcare more widely. (shrink)

Society’s relationship with modern animal farming is an ambivalent one: on the one hand there is rising criticism about modern animal farming; on the other hand people appreciate certain aspects of it, such as increased food safety and low food prices. This ambivalence reflects the two faces of modernity: the negative (exploitation of nature and loss of traditions) and the positive (progress, convenience, and efficiency). This article draws on a national survey carried out in the Netherlands that aimed at gaining (...) a deeper understanding about the acceptance of modern dairy farming in Dutch society. People take two dimensions into account when evaluating different aspects of modern dairy farming: (1) the way living beings are used for production and (2) the way a dairy farm functions as a business. In both these dimensions people appeared to adopt cautious opinions: most people preferred relatively traditional and natural farms and were concerned about the use of nature and treatment of animals in modern production—although this did not imply an outright rejection of modern animal farming. The study also looked for (and sought to explain) differences of opinion between social groups. Besides socio-demographic factors such as age and gender, farming experience and value-orientation (such as socially minded and professional) appeared to be important variables. The values and convictions within modern society can help to explain why some people are greatly concerned about animal welfare while some show less concern. This diversity also helps to explain why general information campaigns are quite ineffective in allaying concerns about modern animal farming. (shrink)

The precautionary principle is often invoked in relation to pregnant women and may be one of the underlying reasons for their continuous underrepresentation in clinical research. The principle is appealing, because potential fetal harm as a result of research participation is considered to be serious and irreversible. In our paper, we explore through conceptual analysis whether and if so how the precautionary principle should apply to pregnant women. We argue that the principle is a decision-making strategy underlying risk-benefit decisions in (...) clinical research, which can be applied to pregnant women. However, the current application is a strong one, leading to the promotion of absolute exclusion or, less often, absolute inclusion of pregnant women. In order to change this paralyzing situation, a shift toward weak precautionary thinking is necessary. Instead of automatic extreme precaution, a balance will be found between harms and potential benefits of including pregnant women in clinical research. (shrink)

As early as 2002, CIOMS stated that pregnant women should be presumed eligible for participation in research. Despite this position and calls of other well‐recognized organizations, the health needs of pregnant women in research remain grossly under‐researched. Although the presumption of eligibility remains unchanged, the revision of the 2002 CIOMS International ethical guidelines for biomedical research involving human subjects involved a substantive rewrite of the guidance on research with pregnant women and related guidelines, such as those on fair inclusion and (...) vulnerability. However, close reading of the guidelines reveals morally relevant different approaches to fair inclusion of pregnant women and other under‐represented groups, such as children and incompetents. Where CIOMS sets out that children and adolescents must be included unless a good scientific reason justifies their exclusion, no such claim of having to justify exclusion appears in the guideline on pregnant women. Instead, CIOMS claims that research relevant to pregnant women’s health needs must be promoted. This paper analyses how and to what extent the guideline on pregnant women differs from other guidance on fair inclusion in the document. Accordingly, the paper evaluates to what extent the current phrasing may contribute to fair inclusion of pregnant women in research. We will conclude that a system change towards a learning health system is essential to break down the status quo of knowledge generation in the field of medication use during pregnancy and argue that the CIOMS guidelines allow for this system change. (shrink)

Background Notwithstanding the need to produce evidence-based knowledge on medications for pregnant women, they remain underrepresented in clinical research. Sometimes they are excluded because of their supposed vulnerability, but there are no universally accepted criteria for considering pregnant women as vulnerable. Our aim was to explore whether and if so to what extent pregnant women are vulnerable as research subjects. Method We performed a conceptual and empirical analysis of vulnerability applied to pregnant women. Analysis A conceptual analysis supports Hurst's definition (...) of vulnerability. Consequently, we argue that pregnant women are vulnerable if they encounter an identifiably increased likelihood of incurring additional or greater wrong. According to the literature, this increased likelihood could exist of four alleged features for pregnant women's vulnerability: informed consent, susceptibility to coercion, higher exposure to risk due to lack of knowledge, vulnerability of the fetus. Discussion Testing the features against Hurst's definition demonstrates that they all concern the same issue: pregnant women are only vulnerable because a higher exposure to risk due to lack of scientific knowledge comprises an increased wrong. Research Ethics Committees have a responsibility to protect the vulnerable, but a higher exposure to risk due to lack of scientific knowledge is a much broader issue and also needs to be addressed by other stakeholders. Conclusions The only reason why pregnant women are potentially vulnerable is to the extent that they are increasingly exposed to higher risks due to a lack of scientific knowledge. Accordingly, the discussion can advance to the development of practical strategies to promote fair inclusion of pregnant women in clinical research. (shrink)

Both the concept of a Darwinian tree of life (TOL) and the possibility of its accurate reconstruction have been much criticized. Criticisms mostly revolve around the extensive occurrence of lateral gene transfer (LGT), instances of uptake of complete organisms to become organelles (with the associated subsequent gene transfer to the nucleus), as well as the implications of more subtle aspects of the biological species concept. Here we argue that none of these criticisms are sufficient to abandon the valuable TOL concept (...) and the biological realities it captures. Especially important is the need to conceptually distinguish between organismal trees and gene trees, which necessitates incorporating insights of widely occurring LGT into modern evolutionary theory. We demonstrate that all criticisms, while based on important new findings, do not invalidate the TOL. After considering the implications of these new insights, we find that the contours of evolution are best represented by a TOL. (shrink)

Les décisions politiques sur les risques environnementaux complexes font fréquemment intervenir des éléments scientifiques contestés. Il n’y a généralement pas de « faits » qui conduisent à une politique correcte unique. Les éléments de preuve qui sont intégrés dans les avis scientifiques destinés à une décision politique nécessitent une évaluation de leur qualité. En 2003, l’Agence néerlandaise d’évaluation environnementale a adopté une méthode standardisée, désignée sous le nom de « guide », dans le cadre de laquelle les principaux aspects de (...) la production et de l’utilisation des connaissances sont présentés grâce à une liste de contrôle visant à l’évaluation et à la communication des incertitudes. Dans cet article, nous présentons des résultats de l’application de ce guide à la controverse sur les risques des particules en suspension. La délibération active sur l’incertitude dans un contexte d’expertise entraîne un processus d’apprentissage commun entre les experts et les décideurs politiques, ce qui conduit à une meilleure prise de conscience du phénomène d’incertitude et de ses implications politiques.Policy decisions on complex environmental risks often involve disputed science. Typically, there are no “ facts” to support a single unequivocally correct policy. The evidence provided in scientific studies for policy-making decisions requires high-quality assessment. In 2003, the Netherlands Environmental Assessment Agency adopted a standardized method, referred to as “guidelines”, whereby key quality aspects of knowledge production and use are presented in the form of a checklist for uncertainty assessments and communication. In this article, we present the outcomes of applying the guidelines in controversies on the risks of ambient particulate matter. In the policy–advisory context, active deliberation on uncertainty produces a common learning process for advisors and policy makers, which leads to a deeper understanding and increased awareness of the phenomenon of uncertainty and its policy implications. (shrink)

Over the past decades, both wild and domesticated insect pollinators are in dramatic decline, which puts at stake the existence of species, ecosystem resilience and global food security. Globally, 87 of major food crops depend on animal pollination. Together these account for 35 % of the world food production volume. Pollinator mediated crops are indispensable for essential micronutrients in the human diet. Many ornamental plants as well as crops for fibre, fodder, biofuels, timber and phytopharmaceuticals also depend on insect pollinators. (...) This article aims to map the current situation of pollinators worldwide, with a focus on the critical role of pollinators in the human food chain and ecosystem sustainability, their intrinsic and extrinsic value, as well as the causes of their declines and the interventions needed to conserve them, in order to develop an argument for the importance of conserving and restoring pollinator populations and diversity. The present pollinator crisis threatens global and local food security, can worsen the problems of hidden hunger, erodes ecosystem resilience, and can destabilise ecosystems that form our life support system. An integrated approach that simultaneously addresses the key drivers is needed. This includes creation and restoration of floral and nesting resources, a global phase out of prophylactic use of neonicotinoids and fipronil, improvement of test protocols in authorisation of agrochemicals, and restoration and maintenance of independence in regulatory science. The authors argue that an international treaty for global pollinator stewardship and pollinator ecosystem restoration should be initiated in order to systemically counteract the current crisis. (shrink)

BackgroundThere is ambiguity with regard to what counts as an acceptable level of risk in clinical research in pregnant women and there is no input from stakeholders relative to such research risks. The aim of our paper was to explore what stakeholders who are actively involved in the conduct of clinical research in pregnant women deem an acceptable level of risk for pregnant women in clinical research. Accordingly, we used the APOSTEL VI study, a low-risk obstetrical randomised controlled trial, as (...) a case-study.MethodsWe conducted a prospective qualitative study using 35 in-depth semi-structured interviews and one focus group. We interviewed healthcare professionals, Research Ethics Committee members and regulators who are actively involved in the conduct of clinical research in pregnant women, in addition to pregnant women recruited for the APOSTEL VI case-study in the Netherlands.ResultsThree themes characterise the way stakeholders view risks in clinical research in pregnant women in general. Additionally, one theme characterises the way healthcare professionals and pregnant women view risks with respect to the case-study specifically. First, ideas on what constitutes an acceptable level of risk in general ranged from a preference for zero risk for the foetus up to minimal risk. Second, the desirability of clinical research in pregnant women in general was questioned altogether. Third, stakeholders proposed to establish an upper limit of risk in potentially beneficial clinical research in pregnant women in order to protect the foetus and the pregnant woman from harm. Fourth and finally, the case-study illustrates that healthcare professionals’ individual perception of risk may influence recruitment.ConclusionsHealthcare professionals, RECs, regulators and pregnant women are all risk adverse in practice, possibly explaining the continuing underrepresentation of pregnant women in clinical research. Determining the acceptable levels of risk on a universal level alone is insufficient, because the individual perception of risk also influences behaviour towards pregnant women in clinical research. Therefore, bioethicists and researchers might be interested in changing the perception of risk, which could be achieved by education and awareness about the actual benefits and harms of inclusion and exclusion of pregnant women. (shrink)

Research on self-agency emphasizes the importance of a comparing mechanism, which scans for a match between anticipated and actual outcomes, in the subjective experience of doing.This study explored the “feeling of doing” in individuals with checking symptoms by examining the mechanism involved in the experienced agency for outcomes that matched expectations. This mechanism was explored using a task in which the subliminal priming of potential action-effects generally enhances people’s feeling of causing these effects when they occur, due to the unconscious (...) perception of a match between primed and observed outcomes. The main result revealed a negative relationship between checking and self-agency for observed outcomes that were primed prior to actions. This suggests that checking individuals fail to grasp the correspondence between actual outcomes of their actions and expected ones. We discuss the possible role of undermined self-agency in checking phenomena and its relationship with cognitive dysfunction. (shrink)

This study examined cognitive representations of routine action, through the assessment of level of agency, in individuals with sub-clinical checking. The level of agency stems from Action Identification Theory [Vallacher, R. R., Wegner, D. M. . Levels of personal agency: Individual variation in action identification. Journal of Personality and Social Psychology 57, 660–671], which states that how actions are usually identified reflects the predominant accessibility of internal representation . Furthermore, this framework proposed that altered action regulation is related to low-level (...) of agency . In the current study, the main result indicated that checking symptoms were related to a low-level of agency, that is, individuals with sub-clinical checking identified habitual actions on the basis of instrumental aspects. This seems to indicate that checkers may act with a lack of goal representations. The results are discussed in terms of the role of low-level of agency in checking phenomena and related cognitive dysfunction. (shrink)

This article’s guiding thesis is that the theory of radical democratic citizenship is built on a tension between a radical, conflictual element and a democratic element. As radical democrats, these philosophers point to the intimate relation between conflict and both emancipation and democracy. But as radical democrats, they also propose different methods that prevent conflict from breaking up the polis—the common ground that makes democratic conflict possible. I look at two radical democrats’ way of dealing with this tension: Chantal Mouffe (...) and Étienne Balibar. My claim is that the former ends up overemphasising the danger of division in her later democratic works and is therefore unable to account for more intense forms of democratic resistance (such as riots). In the work of Balibar, however, we find a way of dealing with this tension. (shrink)

Research skills are important for university graduates, but little is known about undergraduates’ motivation for research. In this study, self-efficacy beliefs and intrinsic motivation for several research activities were measured three times during an undergraduate research project. In order to promote self-efficacy for writing and collaboration, a collaboration script was developed and tested on half of the students. Twelve students were interviewed three times to gather in-depth information about motivational and self-efficacy beliefs. All measures except intrinsic motivation for research increased (...) significantly during the project. Interview results suggest that enactive mastery and positive social interdependence promoted self-efficacy. Feelings of relatedness seemed to promote intrinsic motivation for writing. Lack of autonomy and low perceived relevance may explain why motivation for research remained stable. The script had no impact on self-efficacy beliefs. Relatedness,... (shrink)