If a hereditary predisposition to colorectal cancer or breast cancer is diagnosed, most guidelines state that clinical geneticists should request index patients to inform their at-risk relatives about the existence of this condition in their family, thus enabling them to consider presymptomatic genetic testing. Those identified as mutation carriers can undertake strategies to reduce their risk of developing the disease or to facilitate early diagnosis. This procedure of informing relatives through the index patient has been criticised, as it results in (...) relatively few requests for genetic testing, conceivably because a certain number of relatives remain uninformed. This pilot study explored attitudes toward informing family members and relevant practices among clinical geneticists. In general, clinical geneticists consider it to be in the interests of family members to be informed and acknowledge that this goal is not accomplished by current procedures. The reasons given for maintaining present practices despite this include clinical ‘mores’, uncertainty about the legal right of doctors to inform family members themselves, and, importantly, a lack of resources. We discuss these reasons from an ethical point of view and conclude that they are partly uninformed and inconsistent. If informing relatives is considered to be in their best interests, clinical geneticists should consider informing relatives themselves. In the common situation in which index patients do not object to informing relatives, no legal obstacles prevent geneticists from doing so. An evaluation of these findings among professionals may lead to a more active approach in clinical practice. (shrink)

Ce volume offre l'édition critique de la traduction latine médiévale (partielle) de la troisième partie de la Physique du Shif?' d'Avicenne. Pour l'édition de la peine première partie traduite à Tolède, qui couvre le prologue et le début du premier chapitre, les mêmes principes ont été maintenus que pour l'édition du second traité. Quant à l'édition de la majeure partie, qui fut traduite à Burgos quasiment un siècle après la tolédane et qui n'a été conservée que dans un seul témoin, (...) les cas où la traduction latine ne correspond pas à la lecture du texte arabe sont analysés de façon particulière et, autant que possible, expliqués sur la base de considérations philologiques et/ou doctrinales. En outre, dans la mesure du possible, les sources historiques des doctrines évoquées par Avicenne dans l'ensemble de ces chapitres ont été précisés. (shrink)

The use of coercive measures in the care for the addicted has changed over the past 20 years. Laws that have adopted the “dangerousness” criterion in order to secure patients’ rights to non-intervention are increasingly subjected to critique as many authors plead for wider dangerousness criteria. One of the most salient moral issues at stake is whether addicts who are at risk of causing danger to themselves should be involuntarily admitted and/or treated. In this article, it is argued that the (...) dilemma between coercion on the one hand and abandonment on the other cannot be analysed without differentiated perspectives on the key notions that are used in these debates. The ambiguity these notions carry within care practice indicates that the conflict between the prevention of danger and respect for autonomy is not as sharp as the legal systems seem to imply. Some coercive measures need not be interpreted as an infringement of autonomy—rather, they should be interpreted as a way to provide good care. (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)

Irreplicability is framed as crisis, blamed on sloppy science motivated by perverse stimuli in research. Structural changes to the organization of science, targeting sloppy science (e.g., open data, pre‐registration), are proposed to prevent irreplicability. While there is an unquestionable link between sloppy science and failures to replicate/reproduce scientific studies, they are currently conflated. This position can be understood as a result of the erosion of the role of theory in science. The history, sociology, and philosophy of science reveal alternative explanations (...) for irreplicability to show it is part of proper, informative and valuable science. Irreplicability need not equate research waste. Sloppy science is the problem, also when results do replicate. Hence, the solution should focus on opposing sloppy research. (shrink)

The main premise of the Royal Dutch Medical Association's (RDMA) guideline on palliative sedation is that palliative sedation, contrary to euthanasia, is normal medical practice. Although we do not deny the ethical distinctions between euthanasia and palliative sedation, we will critically analyse the guideline's argumentation strategy with which euthanasia is demarcated from palliative sedation. First, we will analyse the guideline's main premise, which entails that palliative sedation is normal medical treatment. After this, we will critically discuss three crucial propositions of (...) the guideline that are used to support this premise: (1) the patient's life expectancy should not exceed 2 weeks; (2) the aim of the physician should be to relieve suffering and (3) expert consultation is optional. We will conclude that, if inherent problematic aspects of palliative sedation are taken seriously, palliative sedation is less normal than it is now depicted in the guideline. (shrink)

The aim of this research was to gain insight into the experiences and perspectives of individual members of a Medical Research Ethics Committee regarding their individual roles and possible tensions within and between these roles. We conducted a qualitative interview study among members of a large MREC, supplemented by a focus group meeting. Respondents distinguish five roles: protector, facilitator, educator, advisor and assessor. Central to the role of protector is securing valid informed consent and a proper risk-benefit analysis. The role (...) of facilitator implies that respondents want to think along with and assist researchers in order to help medical science progress. As educators, the respondents want to raise ethical and methodological awareness of researchers. The role of advisor implies that respondents bring in their own expertise. The role of assessor points to contributing to the overall evaluation of the research proposal. Various tensions were identified within and between roles. Within the role of protector, a tension is experienced between paternalism and autonomy. Between the role of protector and facilitator tensions occur when the value of a study is questioned while risks and burdens for the subjects are negligible. Within the role of assessor, a tension is felt between the implicit nature of judgments and the need for more explicit formulations. Awareness of various roles and responsibilities may prevent one-sided views on MREC work, not only by members themselves, but also by researchers. Tensions within and between the roles require reflection by MREC members. (shrink)

The aim of this research was to gain insight into the experiences and perspectives of individual members of a Medical Research Ethics Committee regarding their individual roles and possible tensions within and between these roles. We conducted a qualitative interview study among members of a large MREC, supplemented by a focus group meeting. Respondents distinguish five roles: protector, facilitator, educator, advisor and assessor. Central to the role of protector is securing valid informed consent and a proper risk-benefit analysis. The role (...) of facilitator implies that respondents want to think along with and assist researchers in order to help medical science progress. As educators, the respondents want to raise ethical and methodological awareness of researchers. The role of advisor implies that respondents bring in their own expertise. The role of assessor points to contributing to the overall evaluation of the research proposal. Various tensions were identified within and between roles. Within the role of protector, a tension is experienced between paternalism and autonomy. Between the role of protector and facilitator tensions occur when the value of a study is questioned while risks and burdens for the subjects are negligible. Within the role of assessor, a tension is felt between the implicit nature of judgments and the need for more explicit formulations. Awareness of various roles and responsibilities may prevent one-sided views on MREC work, not only by members themselves, but also by researchers. Tensions within and between the roles require reflection by MREC members. (shrink)

This contribution is a report of a two months' participant observation in a Dutch hospice. The goal of the observation was to gain an overview of moral decisions in a hospice in which euthanasia, a tolerated practice in the Netherlands, is not accepted as an option. In an introduction, the development of palliative care in the Netherlands will be briefly presented. Subsequently, various moral decisions that were taken during the participant observation are presented and analysed by means of case reports. (...) Attention is especially drawn to decisions that directly or indirectly relate to euthanasia. These moral decisions will be clarified in the light of the philosophy behind the concept of palliative care as it has evolved since the foundation of St Christopher's Hospice, London in 1967. (shrink)

BackgroundIn the Canadian Alliance for Healthy Hearts and Minds (CAHHM) cohort, participants underwent magnetic resonance imaging (MRI) of the brain, heart, and abdomen, that generated incidental findings (IFs). The approach to managing these unexpected results remain a complex issue. Our objectives were to describe the CAHHM policy for the management of IFs, to understand the impact of disclosing IFs to healthy research participants, and to reflect on the ethical obligations of researchers in future MRI studies.MethodsBetween 2013 and 2019, 8252 participants (...) (mean age 58 ± 9 years, 54% women) were recruited with a follow-up questionnaire administered to 909 participants (40% response rate) at 1-year. The CAHHM policy followed a restricted approach, whereby routine feedback on IFs was not provided. Only IFs of severe structural abnormalities were reported.ResultsSevere structural abnormalities occurred in 8.3% (95% confidence interval 7.7–8.9%) of participants, with the highest proportions found in the brain (4.2%) and abdomen (3.1%). The majority of participants (97%) informed of an IF reported no change in quality of life, with 3% of participants reporting that the knowledge of an IF negatively impacted their quality of life. Furthermore, 50% reported increased stress in learning about an IF, and in 95%, the discovery of an IF did not adversely impact his/her life insurance policy. Most participants (90%) would enrol in the study again and perceived the MRI scan to be beneficial, regardless of whether they were informed of IFs. While the implications of a restricted approach to IF management was perceived to be mostly positive, a degree of diagnostic misconception was present amongst participants, indicating the importance of a more thorough consent process to support participant autonomy.ConclusionThe management of IFs from research MRI scans remain a challenging issue, as participants may experience stress and a reduced quality of life when IFs are disclosed. The restricted approach to IF management in CAHHM demonstrated a fair fulfillment of the overarching ethical principles of respect for autonomy, concern for wellbeing, and justice. The approach outlined in the CAHHM policy may serve as a framework for future research studies.Clinical trial registrationhttps://clinicaltrials.gov/ct2/show/nct02220582. (shrink)

In literature as well as in nursing practice a growing concern about nurses’ ethical competence can be observed. Based on the cognitive theory of moral development by Kohlberg, this research examined nursing students’ ethical behaviour in five nursing dilemmas. Ethical behaviour refers not only to the ethical reasoning of nursing students but also to the relationship between reasoning and behaviour. Kohlberg’s definition of morality was refined by adding a care perspective. The results show that the majority of students can be (...) located in the fourth moral stage according to Kohlberg’s theory, that is, the conventional level of moral development. This finding implies that students are still guided by professional rules, norms and duties, and have not (yet) succeeded in making personal ethical decisions on the basis of their own principles and acting according to such decisions. (shrink)

Une grande partie du livre Kitāb al-inṣāf d’Avicenne ne nous est pas parvenue. Toutefois, le «paraphrase-commentaire » ayant trait à la Métaphysique d’Aristote, livre Lambda, chapitres 6-10 a été conservé dans deux manuscrits. En 1948 Badawi avait fourni une édition du texte arabe, qui, malgré ses mérites, est ouverte à des corrections importantes, comme le démontrent quelques exemples. En outre, une attention particulière est payée au problème de l’identification de la traduction utilisée par Avicenne. Un examen, bien que non exhaustif, (...) de différents cas donne à penser qu’il s’agit d’une version révisée de la traduction d’Usāth. Mais il est à noter qu’Avicenne n’hésite pas de modifier de temps à temps la terminologie en fonction de sa propre pensée. Enfin, des éléments novateurs se font jour, dont au moins deux s’expliquent par les particularités de la traduction arabe. Au niveau doctrinal, trois éléments de telle sorte ressortissent : 1. le rejet d’inclure l’argument du Premier moteur immobile comme preuve de Dieu dans un contexte métaphysique ; 2. la qualification de la dépendance de l’univers envers le Premier Principe en termes de « don d’être » , non de mouvement ; enfin, 3. l’affirmation que l’auto-connaissance du Premier Principe inclut la connaissance de toutes les choses.A large part of Avicenna’s Kitāb al-inṣāf has been lost. However, the section containing a « paraphrasis-commentary » of Aristotle’s Metaphysics, book Lambda, chapters 6-10, has reached us in two manuscripts. Badawi, in 1948, has offered a printed edition that notwithstanding its merits is open to serious improvement as shown by several examples. Furthermore, the problem of which of the old Arabic translation Avicenna has used is dealt with in detail. The examined cases, although limited in number, point to a revised version of Ustāth’s translation. But it has to be noted that Avicenna now and then changes the terminology consciously in view of his own ideas. Finally, some innovative elements come to the fore, two of which, at least, are due to particularities of the Arabic translation. From the doctrinal point of view, three ideas do strike: 1. the fact that the proof of the Unmoved Mover is unacceptable in a metaphysical context; 2. the qualification of the dependence of the Universe on the First Principle as a “Gift of Being” , not as a motion; 3. the inclusion of the knowledge of all things in God’s self-knowledge. (shrink)

Collective intelligence in organizational teams has been predominantly understood and explained in terms of the quality of the outcomes that the team produces. This manuscript aims to extend the understanding of CI in teams, by disentangling the core of actual collective intelligent team behavior that unfolds over time during a collaboration period. We posit that outcomes do support the presence of CI, but that collective intelligence itself resides in the interaction processes within the team. Teams behave collectively intelligent when the (...) collective behaviors during the collaboration period are in line with the requirements of the tasks the team is assigned to and the environment. This perspective results in a challenging, but promising research agenda armed with new research questions that call for unraveling longitudinal fine-grained interactional processes over time. We conclude with exploring methodological considerations that assist researchers to align concept and methodology. In sum, this manuscript proposes a more direct, thorough, and nuanced understanding of collective intelligence in teams, by disentangling micro-level team behaviors over the course of a collaboration period. With this in mind, the field of CI will get a more fine-grained understanding of what really happens at what point in time: when teams behave more or less intelligently. Additionally, when we understand collectively intelligent processes in teams, we can organize targeted interventions to improve or maintain collective intelligence in teams. (shrink)