Vakfilosofische opstellen over de hedendaagse vraagstukken binnen de ethiek.

Background: Although genetic research into Alzheimer disease (AD) is increasing, the ethical aspects of this kind of research and the differences between ethical issues related to genetic and non-genetic research into AD have not yet received much attention. Objectives: (1) To identify and compare the five ethical issues considered most important by surveyed expert panellists in non-genetic and genetic AD research and (2) to compare our empirical findings with ethical issues in genetic research in general as described in the literature. (...) Method: A modified Delphi study in two rounds Results: Genetic and non-genetic research into AD generated an approximately equal number of topics with a considerable overlap. Different priorities in the ethics of both types of research were found. Genetic research raised new topics such as “confidentiality of genetic information” and “implications of research for relatives” which changes the impact and application of existing ethical topics such as “informed consent” and is judged to have more impact on both individuals and society. A difference with the results of more theoretical approaches on ethical aspects related to AD research was also found. Conclusions: Different priorities are given to ethical issues in genetic and non-genetic research. These arise partly because genetic research causes unique and new questions, mostly related to the position of family members and the status of and access to genetic information. Differences found between the results of our empirical study and the more theoretical literature, suggest an additional value for empirical research in medical ethics. (shrink)

Instruction in peer assessment of complex task performance may cause high cognitive load, impairing learning. A stepwise instructional strategy aimed at reducing cognitive load was investigated by comparing it with a combined instructional strategy in an experiment with 128 secondary school students (mean age 14.0?years; 45.2% male) with the between-subjects factor instruction (stepwise, combined). In the stepwise condition, study tasks in Phase 1 were domain-specific and study tasks in Phase 2 had both domain-specific and peer assessment components. In the combined (...) condition, these two components were present in all tasks in both phases. Final performance (i.e. speed and accuracy in domain-specific skills and peer assessment skills) showed no significant differences, but performance improved more from Phase 1 to Phase 2 in the stepwise condition than in the combined condition. The results suggest that, with complex study tasks, it might be beneficial to teach domain-specific skills before peer assessment skills. (shrink)

This study aims to contribute to emerging human-robot interaction research by adding longitudinal findings to a limited number of long-term social robotics home studies. We placed 70 robots in users’ homes for a period of up to six months, and used questionnaires and interviews to collect data at six points during this period. Results indicate that users’ evaluations of the robot dropped initially, but later rose after the robot had been used for a longer period of time. This is congruent (...) with the so-called mere-exposure effect, which shows an increasing positive evaluation of a novel stimulus once people become familiar with it. Before adoption, users focus on control beliefs showing that previous experiences with robots or other technologies allows to create a mental image of what having and using a robot in the home would entail. After adoption, users focus on utilitarian and hedonic attitudes showing that especially usefulness, social presence, enjoyment and attractiveness are important factors for long-term acceptance. (shrink)

Background: Debates over legalisation of physician-assisted suicide or euthanasia often warn of a “slippery slope”, predicting abuse of people in vulnerable groups. To assess this concern, the authors examined data from Oregon and the Netherlands, the two principal jurisdictions in which physician-assisted dying is legal and data have been collected over a substantial period.Methods: The data from Oregon comprised all annual and cumulative Department of Human Services reports 1998–2006 and three independent studies; the data from the Netherlands comprised all four (...) government-commissioned nationwide studies of end-of-life decision making and specialised studies. Evidence of any disproportionate impact on 10 groups of potentially vulnerable patients was sought.Results: Rates of assisted dying in Oregon and in the Netherlands showed no evidence of heightened risk for the elderly, women, the uninsured , people with low educational status, the poor, the physically disabled or chronically ill, minors, people with psychiatric illnesses including depression, or racial or ethnic minorities, compared with background populations. The only group with a heightened risk was people with AIDS. While extralegal cases were not the focus of this study, none have been uncovered in Oregon; among extralegal cases in the Netherlands, there was no evidence of higher rates in vulnerable groups.Conclusions: Where assisted dying is already legal, there is no current evidence for the claim that legalised PAS or euthanasia will have disproportionate impact on patients in vulnerable groups. Those who received physician-assisted dying in the jurisdictions studied appeared to enjoy comparative social, economic, educational, professional and other privileges. (shrink)

We apply an online optimization process based on machine learning to the production of Bose-Einstein condensates. BEC is typically created with an exponential evaporation ramp that is optimal for ergodic dynamics with two-body s-wave interactions and no other loss rates, but likely sub-optimal for real experiments. Through repeated machine-controlled scientific experimentation and observations our ’learner’ discovers an optimal evaporation ramp for BEC production. In contrast to previous work, our learner uses a Gaussian process to develop a statistical model of the (...) relationship between the parameters it controls and the quality of the BEC produced. We demonstrate that the Gaussian process machine learner is able to discover a ramp that produces high quality BECs in 10 times fewer iterations than a previously used online optimization technique. Furthermore, we show the internal model developed can be used to determine which parameters are essential in BEC creation and which are unimportant, providing insight into the optimization process of the system. (shrink)

Patient competence, defined as the ability to reason, appreciate, understand, and express a choice is rarely discussed in patients with obsessive compulsive disorder, and coercive measures are seldom used. Nevertheless, a psychiatrist of psychologist may doubt whether OCD patients who refuse treatment understand their disease and the consequences of not being treated, which could result in tension between respecting the patient’s autonomy and beneficence. The purpose of this article is to develop a notion of competence that is grounded in clinical (...) practice and corresponds with the experiences of patients with obsessions and/or compulsions. We present a naturalistic case study giving both the patient’s and the therapist’s perspective based on in-depth interviews and a narrative analysis. The case study shows that competence is not merely an assessment by a therapist, but also a co-constructed reality shaped by the experiences and stories of patient and therapist. The patient, a medical student, initially told her story in a restitution narrative, focusing on cognitive rationality. Reconstructing the history of her disease, her story changed into a quest narrative where there was room for emotions, values and moral learning. This fitted well with the therapist’s approach, who used motivational interventions with a view to appealing to the patient’s responsibility to deal with her condition. We conclude that in practice both the patient and therapist used a quest narrative, approaching competence as the potential for practical reasoning to incorporate values and emotions. (shrink)

The innovative field of Regenerative Medicine (RM) is expected to extend the possibilities of prevention or early treatment in healthcare. Increasingly, clinical trials will be developed for people at risk of disease to investigate these RM interventions. These individuals at risk are characterised by their susceptibility for developing clinically manifest disease in future due to the existence of degenerative abnormalities. So far, there has been little debate about the ethical appropriateness of including such individuals at risk in clinical trials. We (...) discuss three main challenges of selecting this participant model for testing RM interventions: the challenge of achieving a proportional risk–benefit balance; complexities in the trial design in terms of follow-up and sample size; and the difficulty of obtaining informed consent due to the many uncertainties. We conclude that selecting the model is not ethically justifiable for first-in-man trials with RM interventions due to the high risks and uncertainties. However, the model can be ethically appropriate for testing the efficacy of RM interventions under the following conditions: interventions should be low risk; the degenerative abnormalities (and other risk factors) should be strongly related with disease within a short time frame; robust preclinical evidence of efficacy needs to be present; and the informed consent procedure should contain extra safeguards with regard to communication on uncertainties. (shrink)

Progressive supranuclear palsy is a movement disorder with prominent tau neuropathology. Brain diseases with abnormal tau deposits are called tauopathies, the most common of which is Alzheimer's disease. Environmental causes of tauopathies include repetitive head trauma associated with some sports. To identify common genetic variation contributing to risk for tauopathies, we carried out a genome-wide association study of 1,114 individuals with PSP and 3,247 controls followed by a second stage in which we genotyped 1,051 cases and 3,560 controls for the (...) stage 1 SNPs that yielded P ≤ 10-3. We found significant previously unidentified signals associated with PSP risk at STX6, EIF2AK3 and MOBP. We confirmed two independent variants in MAPT affecting risk for PSP, one of which influences MAPT brain expression. The genes implicated encode proteins for vesicle-membrane fusion at the Golgi-endosomal interface, for the endoplasmic reticulum unfolded protein response and for a myelin structural component. © 2011 Nature America, Inc. All rights reserved. (shrink)

Background: People with a personality disorder suffer from enduring inflexible patterns in cognitions and emotions, leading to significant subjective distress, affecting both self and interpersonal functioning. In clinical practice, Dance Movement Therapy is provided to clients with a PD, and although research continuously confirms the value of DMT for many populations, to date, there is very limited information available on DMT and PD. For this study, a systematic literature review on DMT and PD was conducted to identify the content of (...) the described DMT interventions and the main treatment themes to focus upon in DMT for PD.Methods: A systematic search was conducted across the following databases: EMBASE, MEDLINE, PubMed, WEB OF SCIENCE, PsycINFO/OVID, and SCOPUS following the PRISMA guidelines. The Critical Appraisal Skills Programme for qualitative studies was used to rank the quality of the articles. The Oxford Center for Evidence-based Medicine standards were applied to determine the hierarchical level of best evidence. Quantitative content analysis was used to identify the intervention components: intended therapeutic goals, therapeutic activities leading to these goals, and suggested therapeutic effects following from these activities. A thematic synthesis approach was applied to analyze and formulate overarching themes.Results: Among 421 extracted articles, four expert opinions met the inclusion criteria. Six overarching themes were found for DMT interventions for PD: self-regulation, interpersonal relationships, integration of self, processing experiences, cognition, and expression and symbolization in movement/dance. No systematic descriptions of DMT interventions for PD were identified. A full series of intervention components could be synthesized for the themes of self-regulation, interpersonal relationships, and cognition. The use of body-oriented approaches and cognitive strategies was in favor of dance-informed approaches.Conclusions: Dance movement therapists working with PD clients focus in their interventions on body-related experiences, non-verbal interpersonal relationships, and to a lesser extent, cognitive functioning. A methodological line for all intervention components was synthesized for the themes of self-regulation, interpersonal relationships, and cognition, of importance for developing systematic intervention descriptions. Future research could focus on practitioners' expertise in applying DMT interventions for PD to develop systematic intervention descriptions and explore the suitability of the identified themes for clinical application. Clients' experiences could offer essential insights on how DMT interventions could address PD pathology and specific PD categories. (shrink)