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)

The problem of simultaneous measurement of incompatible observables in quantum mechanics is studied on the one hand from the viewpoint of an axiomatic treatment of quantum mechanics and on the other hand starting from a theory of measurement. It is argued that it is precisely such a theory of measurement that should provide a meaning to the axiomatically introduced concepts, especially to the concept of observable. Defining an observable as a class of measurement procedures yielding a certain prescribed result for (...) the probability distribution of the set of values of some quantity (to be described by the set of eigenvalues of some Hermitian operator), this notion is extended to joint probability distributions of incompatible observables. It is shown that such an extension is possible on the basis of a theory of measurement, under the proviso that in simultaneously measuring such observables there is a disturbance of the measurement results of the one observable, caused by the presence of the measuring instrument of the other observable. This has as a consequence that the joint probability distribution cannot obey the marginal distribution laws usually imposed. This result is of great importance in exposing quantum mechanics as an axiomatized theory, since overlooking it seems to prohibit an axiomatic description of simultaneous measurement of incompatible observables by quantum mechanics. (shrink)

Broad genome-wide testing is increasingly finding its way to the public through the online direct-to-consumer marketing of so-called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision-making with regard to the testing offer, we argue that current (...) practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings. (shrink)

Broad genome‐wide testing is increasingly finding its way to the public through the online direct‐to‐consumer marketing of so‐called personal genome tests. Personal genome tests estimate genetic susceptibilities to multiple diseases and other phenotypic traits simultaneously. Providers commonly make use of Terms of Service agreements rather than informed consent procedures. However, to protect consumers from the potential physical, psychological and social harms associated with personal genome testing and to promote autonomous decision‐making with regard to the testing offer, we argue that current (...) practices of information provision are insufficient and that there is a place – and a need – for informed consent in personal genome testing, also when it is offered commercially. The increasing quantity, complexity and diversity of most testing offers, however, pose challenges for information provision and informed consent. Both specific and generic models for informed consent fail to meet its moral aims when applied to personal genome testing. Consumers should be enabled to know the limitations, risks and implications of personal genome testing and should be given control over the genetic information they do or do not wish to obtain. We present the outline of a new model for informed consent which can meet both the norm of providing sufficient information and the norm of providing understandable information. The model can be used for personal genome testing, but will also be applicable to other, future forms of broad genetic testing or screening in commercial and clinical settings. (shrink)

Some experts have argued that patients should routinely be told the specific magnitude and absolute probability of potential risks and benefits of screening tests. This position is motivated by the idea that framing risk information in ways that are less precise violates the ethical principle of respect for autonomy and its application in informed consent or shared decisionmaking. In this Perspective, we consider a number of problems with this view that have not been adequately addressed. The most important challenges stem (...) from the danger that patients will misunderstand the information or have irrational responses to it. Any initiative in this area should take such factors into account and should consider carefully how to apply the ethical principles of respect for autonomy and beneficence. (shrink)

While several tests and strategies are recommended for colorectal cancer (CRC) screening, studies suggest that primary care providers often recommend colonoscopy without providing information about its risks or alternatives. These observations raise concerns about the quality of informed consent for screening colonoscopy.

Ethics should guide the design of electronic health records (EHR), and recognized principles of bioethics can play an important role. This approach was adopted recently by a team of informaticists designing and testing a system where patients exert granular control over who views their personal health information. While this method of building ethics in from the start of the design process has significant benefits, questions remain about how useful the application of bioethics principles can be in this process, especially when (...) principles conflict. For instance, while the ethical principle of respect for autonomy supports a robust system of granular control, the principles of beneficence and non-maleficence counsel restraint due to the danger of patients being harmed by restrictions on provider access to data. Conflict between principles has long been recognized by ethicists and has even motivated attacks on approaches that state and apply principles. In this paper we show how using ethical principles can help in the design of EHRs by first, explaining how ethical principles can and should be used generally, and then by, discuss how attention to details in specific cases can show that the tension between principles is not as bad as it initially appeared. We conclude by suggesting further ways in which the application of these (and other) principles can add value to the ongoing discussion of patient involvement in their health care. This is a new approach to linking principles to informatics design that we expect will stimulate further interest. (shrink)

Background: As genetics technology proceeds, practices of genetic testing have become more heterogeneous: many different types of tests are finding their way to the public in different settings and for a variety of purposes. This diversification is relevant to the discourse on ethical, legal and societal issues (ELSI) surrounding genetic testing, which must evolve to encompass these differences. One important development is the rise of personal genome testing on the basis of genetic profiling: the testing of multiple genetic variants simultaneously (...) for the prediction of common multifactorial diseases. Currently, an increasing number of companies are offering personal genome tests directly to consumers and are spurring ELSI-discussions, which stand in need of clarification. This paper presents a systematic approach to the ELSI-evaluation of personal genome testing for multifactorial diseases along the lines of its test characteristics.DiscussionThis paper addresses four test characteristics of personal genome testing: its being a non-targeted type of testing, its high analytical validity, low clinical validity and problematic clinical utility. These characteristics raise their own specific ELSI, for example: non-targeted genetic profiling poses serious problems for information provision and informed consent. Questions about the quantity and quality of the necessary information, as well as about moral responsibilities with regard to the provision of information are therefore becoming central themes within ELSI-discussions of personal genome testing. Further, the current low level of clinical validity of genetic profiles raises questions concerning societal risks and regulatory requirements, whereas simultaneously it causes traditional ELSI-issues of clinical genetics, such as psychological and health risks, discrimination, and stigmatization, to lose part of their relevance. Also, classic notions of clinical utility are challenged by the newer notion of 'personal utility.'SummaryConsideration of test characteristics is essential to any valuable discourse on the ELSI of personal genome testing for multifactorial diseases. Four key characteristics of the test - targeted/non-targeted testing, analytical validity, clinical validity and clinical utility - together determine the applicability and the relevance of ELSI to specific tests. The paper identifies and discusses four areas of interest for the ELSI-debate on personal genome testing: informational problems, risks, regulatory issues, and the notion of personal utility. (shrink)

Most people do not know there are different kinds of medical studies; some are conducted on people who already have a disease or medical condition, and others are performed on healthy volunteers who want to help science find answers. No matter what sort of research you are invited to participate in, or whether you are a patient when you are asked, it’s entirely up to you whether or not to do it. This decision is important and may have many implications (...) for your health and well-being, as well as those of other patients now and in the future. Making a good decision – the right one for you – requires you to become educated about topics you may not have thought about before, some of which may be quite complicated. This chapter explains the key issues to help you make a good decision. (shrink)

Although there is a growing recognition that older adults and those with extensive comorbid conditions undergo cancer screening too frequently, there is little information about patients’ perceptions regarding cessation of cancer screening. Information on older adults’ views of screening cessation would be helpful both for clinicians and for those designing interventions to reduce overscreening.

While stigmatisation is universal, stigma research in low- and middle-income countries (LMIC) is limited. LMIC stigma research predominantly concerns health-related stigma, primarily regarding HIV/AIDS or mental illness from an adult perspective. While there are commonalities in stigmatisation, there are also contextual differences. The aim of this study in DR Congo (DRC), as a formative part in the development of a common stigma reduction intervention, was to gain insight into the commonalities and differences of stigma drivers (triggers of stigmatisation), facilitators (factors (...) positively or negatively influencing stigmatisation), and manifestations (practices and experiences of stigmatisation) with regard to three populations: unmarried mothers, children formerly associated with armed forces and groups (CAAFAG), and an indigenous population. Group exercises, in which participants reacted to statements and substantiated their reactions, were held with the ‘general population’ (15 exercises, n = 70) and ‘populations experiencing stigma’ (10 exercises, n = 48). Data was transcribed and translated, and coded in Nvivo12. We conducted framework analysis. There were two drivers mentioned across the three populations: perceived danger was the most prominent driver, followed by perceived low value of the population experiencing stigma. There were five shared facilitators, with livelihood and personal benefit the most comparable across the populations. Connection to family or leaders received mixed reactions. If unmarried mothers and CAAFAG were perceived to have taken advice from the general population and changed their stereotyped behaviour this also featured as a facilitator. Stigma manifested itself for the three populations at family, community, leaders and services level, with participation restrictions, differential treatment, anticipated stigma and feelings of scapegoating. Stereotyping was common, with different stereotypes regarding the three populations. Although stigmatisation was persistent, positive interactions between the general population and populations experiencing stigma were shared as well. This study demonstrated utility of a health-related stigma and discrimination framework and a participatory exercise for understanding non-health related stigmatisation. Results are consistent with other studies regarding these populations in other contexts. This study identified commonalities between drivers, facilitators and manifestations—albeit with population-specific factors. Contextual information seems helpful in proposing strategy components for stigma reduction. (shrink)

To describe the content of practice guidelines on euthanasia and assisted suicide (EAS) and to compare differences between settings and guidelines developed before or after enactment of the euthanasia law in 2002 by means of a content analysis. Most guidelines stated that the attending physician is responsible for the decision to grant or refuse an EAS request. Due care criteria were described in the majority of guidelines, but aspects relevant for assessing these criteria were not always described. Half of the (...) guidelines described the role of the nurse in the performance of euthanasia. Compared with hospital guidelines, nursing home guidelines were more often stricter than the law in excluding patients with dementia (30% vs 4%) and incompetent patients (25% vs 4%). As from 2002, the guidelines were less strict in categorically excluding patients groups (32% vs 64%) and in particular incompetent patients (10% vs 29%). Healthcare institutions should accurately state the boundaries of the law, also when they prefer to set stricter boundaries for their own institution. Only then can guidelines provide adequate support for physicians and nurses in the difficult EAS decision-making process. (shrink)

Albinism in Tanzania causes fierce health-related stigma. Little research has focused on the impact of stigma reduction strategies aiming to reduce albinism related stigma. Therefore, this research assessed the impact of two short video interventions among high school students in Tanzania on their attitude towards people with albinism: a contact intervention (n = 95) and an education intervention (n = 97). A mixed method design was used. Directly before and after the interventions impact was measured among all participants through the (...) Albinism Social Distance Scale for Adolescents (ASDS-A), knowledge items, and entertainment items. After these measurements focus group discussions were conducted, 16 in total (n = 80). Both interventions caused a significant increase in the levels of correct knowledge about albinism. The education intervention entailed a significant positive change in attitude measured through the ASDS-A, whereas the contact intervention did not have a significant effect. In terms of entertainment value, the respondents were more enthusiastic about the contact intervention. The study suggests that education interventions on their own can be a successful tool in decreasing albinism related stigma. Additionally, qualitative findings show many positive outcomes for the contact intervention. Therefore, we would recommend using a combination of these two interventions, which has also proved successful in the past. However, more research on the effect of a combination of the two strategies is recommended. (shrink)

Precision livestock farming (PLF) is the management of livestock using the principles and technology of process engineering. Key to PLF is the dense monitoring of variegated parameters, including animal growth, output of produce (e.g. milk, eggs), diseases, animal behaviour, and the physical environment (e.g. thermal micro-environment, ammonia emissions). While its proponents consider PLF a win-win strategy that combines production efficiency with sustainability goals and animal welfare, critics emphasise, inter alia, the potential interruption of human-animal relationships. This paper discusses the notion (...) that the objectification of animals by PLF influences the developmental pathways of conventional industrial farming. We conduct a conceptual analysis of objectification by comparing discussions in feminist ethics and animal ethics. We find that in animal ethics, objectification includes deontological arguments regarding instrumentalisation, de-animalisation, alienation, commodification and quantification of animals. The focus on socio-political context and relationality connects these debates to central ideas in care ethics. We adopt a care ethics perspective to assess the implications of the objectification of animals in livestock farming. The basic claim is that sensory knowledge symbolised by the farmers’ unity of hand, head and heart would make it harder to objectify animals than abstract and instrumental reasoning where the pursuit of knowledge is intertwined with the pursuit of control, as in mainstream PLF. Despite of what can be considered as a good caring relationship between farmers and animals that is mediated by PLF, people involved in conventional industrial farming still seem to become further detached from farmers and animals, because the PLF system itself is objectifying. PLF redefines the notion of care, in terms of data transparency, standardisation of methods for analysis, real-time collection and processing of data, remote control, and the use of digital platforms. This creates new expectations and requires a redistribution of responsibilities within a wider scope of relations in the value chain. (shrink)

Objective: There are benefits and risks of giving patients more granular control of their personal health information in electronic health record (EHR) systems. When designing EHR systems and policies, informaticists and system developers must balance these benefits and risks. Ethical considerations should be an explicit part of this balancing. Our objective was to develop a structured ethics framework to accomplish this. -/- Methods: We reviewed existing literature on the ethical and policy issues, developed an ethics framework called a “Points to (...) Consider” (P2C) document, and convened a national expert panel to review and critique the P2C. -/- Results: We developed the P2C to aid informaticists designing an advanced query tool for an electronic health record (EHR) system in Indianapolis. The P2C consists of six questions (“Points”) that frame important ethical issues, apply accepted principles of bioethics and Fair Information Practices, comment on how questions might be answered, and address implications for patient care. -/- Discussion: The P2C is intended to clarify whatis at stake when designers try to accommodate potentially competing ethical commitments and logistical realities. The P2C was developed to guide informaticists who were designing a query tool in an existing EHR that would permit patient granular control. While consideration of ethical issues is coming to the forefront of medical informatics design and development practices, more reflection is needed to facilitate optimal collaboration between designers and ethicists. This report contributes to that discussion. (shrink)

AimThe neurocognitive basis of Developmental Coordination Disorder remains an issue of continued debate. This combined systematic review and meta-analysis provides a synthesis of recent experimental studies on the motor control, cognitive, and neural underpinnings of DCD.MethodsThe review included all published work conducted since September 2016 and up to April 2021. One-hundred papers with a DCD-Control comparison were included, with 1,374 effect sizes entered into a multi-level meta-analysis.ResultsThe most profound deficits were shown in: voluntary gaze control during movement; cognitive-motor integration; practice-/context-dependent (...) motor learning; internal modeling; more variable movement kinematics/kinetics; larger safety margins when locomoting, and atypical neural structure and function across sensori-motor and prefrontal regions.InterpretationTaken together, these results on DCD suggest fundamental deficits in visual-motor mapping and cognitive-motor integration, and abnormal maturation of motor networks, but also areas of pragmatic compensation for motor control deficits. Implications for current theory, future research, and evidence-based practice are discussed.Systematic Review RegistrationPROSPERO, identifier: CRD42020185444. (shrink)

The expressive power of logic is believed to be able to model most of the fundamental aspects of information retrieval. However, it is also understood that classical logic is ineffective for handling partiality and uncertainty in IR. Applying non-classical logics such as the AGM belief revision logic and the possibilistic logic to adaptive information retrieval is appealing since they provide a powerful and rigorous framework to model partiality and uncertainty inherent in any IR processes. The maxi-adjustment method, which is an (...) effective computational apparatus of the AGM paradigm, is applied to develop the learning components of the adaptive information agents. Essentially, maxi-adjustment allows the partial representation K of a user's information needs N to be refined gradually based on the user's relevance feedback t. Generally speaking, learning in adaptive information agents is characterised by the AGM belief revision Kt*. On the other hand, possibilistic logic supports a gradated assessment of the uncertainty arising from matching K with the imperfect characterisation d of an information object D. Information matching in adaptive information agents is underpinned by K ƕ d, where ƕ is the possibilistic inference relation. This paper illustrates how maxi-adjustment and possibilistic deduction can be applied to develop the adaptive information agents. Their impact on the agents learning autonomy and explanatory power is also discussed. (shrink)