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)

This paper motivates institutional epistemic trust as an important ethical consideration informing the responsible development and implementation of artificial intelligence (AI) technologies (or AI-inclusivity) in healthcare. Drawing on recent literature on epistemic trust and public trust in science, we start by examining the conditions under which we can have institutional epistemic trust in AI-inclusive healthcare systems and their members as providers of medical information and advice. 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 among different stakeholders involved, its effect on epistemic and communicative duties and burdens on medical professionals and, finally, its interaction and alignment with the public’s ethical values and interests as well as background sociopolitical conditions against which AI-inclusive healthcare systems are embedded. To assess the applicability of these conditions, we explore a recent proposal for AI-inclusivity within the Dutch Newborn Screening Program. In doing so, we illustrate 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 end with suggestions for strategies, interventions, and measures for AI-inclusivity in healthcare more widely. (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)

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 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.

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)

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)

Recent advances in wireless data transmission technology have the potential to revolutionize clinical neuroscience. Today sensing-capable electrical stimulators, known as “bidirectional devices”, are used to acquire chronic brain activity from humans in natural environments. However, with wireless transmission come potential failures in data transmission, and not all available devices correctly account for missing data or provide precise timing for when data losses occur. Our inability to precisely reconstruct time-domain neural signals makes it difficult to apply subsequent neural signal processing techniques (...) and analyses. Here, our goal was to accurately reconstruct time-domain neural signals impacted by data loss during wireless transmission. Towards this end, we developed a method termed Periodic Estimation of Lost Packets. PELP leverages the highly periodic nature of stimulation artifacts to precisely determine when data losses occur. Using simulated stimulation waveforms added to human EEG data, we show that PELP is robust to a range of stimulation waveforms and noise characteristics. Then, we applied PELP to local field potential recordings collected using an implantable, bidirectional DBS platform operating at various telemetry bandwidths. By effectively accounting for the timing of missing data, PELP enables the analysis of neural time series data collected via wireless transmission—a prerequisite for better understanding the brain-behavior relationships underlying neurological and psychiatric disorders. (shrink)

Advances in science and technology has led to the rise of different issues in relation to human life and security as well as the environment. These issues also paved the way for the field of Bioethics with its principles aiming to uphold moral standards on these issues. This study aimed to test and modify the theoretical models of the factors influencing the conviction schemas of BS Biology Bioethics students of a state university toward bioethical issues. One hundred ten (110) undergraduate (...) students were pre-tested and post-tested for comprehension of Bioethics principles, moral disengagement, and convictions toward bioethical issues. Identified personal factors were also retrieved for testing. Results showed that the Bioethics course has increased the participants’ comprehension of Bioethics principles, moral disengagement, and convictions. Stepwise multiple regression results revealed that anxiety, extraversion, exposure to media, and moral disengagement can predict pre-convictions. On the other hand, only moral disengagement was found to predict post-convictions. Furthermore, moral disengagement can be predicted by convictions before the course while anxiety, openness to change, and convictions were the predictors after the course. The proposed theoretical model was for tested goodness of fit using Structural Equation Modeling (SEM) and acceptance was based on the model fit criteria. Since the proposed model was not found to fit the data, this was revised based on the results of multiple regression and correlation among exogenous variables. Three models were constructed and found to fit the data adequately. These models show the direct and indirect effects of personal factors and moral disengagement on convictions. The mediating effects of moral disengagement and convictions to each other were also shown. Findings further imply that the ability to understand the principles does not influence convictions, but rather moral disengagement has a greater influence on the said factor. Improving moral education by integrating Bioethics to the curriculum is recommended to further strengthen the moral judgement and reasoning of students. (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)

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)

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)

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)

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)