Over 30 million people worldwide have taken a commercial at-home DNA test, because they were interested in their genetic ancestry, disease predisposition or inherited traits. Yet, these consumer DNA data are also increasingly used for a very different purpose: to identify suspects in criminal investigations. By matching a suspect’s DNA with DNA from a suspect’s distant relatives who have taken a commercial at-home DNA test, law enforcement can zero in on a perpetrator. Such forensic use of consumer DNA data has (...) been performed in over 200 criminal investigations. However, this practice of so-called investigative genetic genealogy raises ethical concerns. In this paper, we aim to broaden the bioethical analysis on IGG by showing the limitations of an individual-based model. We discuss two concerns central in the debate: privacy and informed consent. However, we argue that IGG raises pressing ethical concerns that extend beyond these individual-focused issues. The very nature of the genetic information entails that relatives may also be affected by the individual customer’s choices. In this respect, we explore to what extent the ethical approach in the biomedical genetic context on consent and consequences for relatives can be helpful for the debate on IGG. We argue that an individual-based model has significant limitations in an IGG context. The ethical debate is further complicated by the international, transgenerational and commercial nature of IGG. We conclude that IGG should not only be approached as an individual but also—and perhaps primarily—as a collective issue. There are no data in this work. (shrink)

Millions of human biological samples are stored worldwide for medical research or treatment purposes. These biospecimens are of enormous potential value to law enforcement as DNA profiles can be obtained from these samples. However, forensic use of such biospecimens raises a number of ethical questions. This article aims to explore ethical issues of using human bodily material in medical biobanks for crime investigation and prosecution purposes. Concerns about confidentiality, trust, autonomy and justice will be discussed. We explore how to balance (...) these concerns against the importance of crime solving. Relevant case examples of forensic use of medical biobanks show that requests by law enforcement to access biobanks are handled in disparate ways. We identify some core ethical issues and conclude that further research on these issues is needed to provide ethical guidance. (shrink)

This is a volume of twelve essays concerning the fundamental tension in personalised medicine between individual choice and the common good.

This article offers a legal-ethical analysis of recent UK and Dutch proposals to regulate surrogacy proactively through a national system of pre-conception authorization of surrogacy agreements. Wi...

In the case of surrogacy, it is not new biotechnologies themselves that have challenged well-established principles in law and ethics, but rather political and social phenomena such as commodification of women’s reproductive tissue and labour, demands to allow new ways of forming families and (before Covid-19, at least) the comparative ease of international travel that enabled cross-border surrogacy to develop into a market valued at up to $2 billion annually in India alone as of 2016 (Dickenson 2016, citing an estimate (...) from The Indian National Commission for Women). This phenomenon stands the usual truth on its head: it is not new technologies but new pressures that have challenged the existing law and ethics of surrogate motherhood. (shrink)

This edited volume covers new ground by bringing together perspectives from symbolic legislation theory on the one hand, and from biolaw and bioethics on the other hand. Symbolic legislation has a bad name. It usually refers to instances of legislation which are ineffective and that serve other political and social goals than the goals officially stated. Recently, a more positive notion of symbolic legislation has emerged in legislative theory. From this perspective, symbolic legislation is regarded as a positive alternative to (...) the more traditional, top-down legislative approach. The legislature no longer merely issues commands backed up with severe sanctions, as in instrumental legislation. Instead, lawmakers provide open and aspirational norms that are meant to change behavior not by means of threat, but indirectly, through debate and social interaction. Since the 1990s, biomedical developments have revived discussions on symbolic legislation. One of the reasons is that biomedical legislation touches on deep-rooted, symbolic-cultural representations of the biological aspects of human life. Moreover, as it is often impossible to reach consensus on these controversial questions, legislators have sought alternative ways to develop legal frameworks. Consequently, communicative and interactive approaches to legislation are prominent within the governance of medical biotechnology. The symbolic dimensions of biolaw are often overlooked. Yet, it is clear that the symbolic is at the heart of many legal-political debates on bioethical questions. Since the rise of biomedical technologies, human body materials have acquired a scientific, medical and even commercial value. These new approaches, which radically question existing legal symbolizations of the human body, raise the question whether and how the law should continue to reflect symbolic values and meanings. Moreover, how can we decide what these symbolic values are, given the fact that we live in a pluralistic society? (shrink)

BackgroundObtaining informed consent for intravenous thrombolysis in acute ischemic stroke can be challenging, and little is known about if and how the informed consent procedure is performed by neurologists in clinical practice. This study examines the procedure of informed consent for intravenous thrombolysis in acute ischemic stroke in high-volume stroke centers in the Netherlands.MethodsIn four high volume stroke centers, neurology residents and attending neurologists received an online questionnaire concerning informed consent for thrombolysis with tissue-type plasminogen activator (tPA). The respondents were (...) asked to report their usual informed consent practice for tPA treatment and their considerations on whether informed consent should be obtained.ResultsFrom the 203 invited clinicians, 50% (n = 101) completed the questionnaire. One-third of the neurology residents (n = 21) and 21% of the neurologists (n = 8) reported that they always obtain informed consent for tPA treatment. If a patient is not capable of providing informed consent, 30% of the residents (n = 19) reported that they start tPA treatment without informed consent. In these circumstances, 53% of the neurologists (n = 20) reported that the resident under their supervision would start tPA treatment without informed consent. Most neurologists (n = 21; 55%) and neurology residents (n = 45; 72%) obtained informed consent within one minute. None of the respondents used more than five minutes for informed consent. Important themes regarding obtaining informed consent for treatment were patients’ capacity, and medical, ethical and legal considerations.ConclusionThe current practice of informed consent for thrombolysis in acute ischemic stroke varies among neurologists and neurology residents. If informed consent is obtained, most clinicians stated to obtain informed consent within one minute. In the future, a shortened information provision process may be applied, making a shift from informed consent to informed refusal, while still considering the patient’s capacity, stroke severity, and possible treatment delays. (shrink)

Metaphors abound in descriptions of the COVID-19 pandemic: it is described, among other things, as a war, a flood, and a marathon. However, not all metaphors may resonate equally well with members...

ABSTRACTThis article introduces the Hyperbole Identification Procedure, a first systematic method for identifying linguistic hyperbole in discourse. We start by comparing existing definitions of linguistic hyperbole. Based on the commonalities shared by these definitions, we provide our operational definition of hyperbole as “an expression that is more extreme than justified given its ontological referent.” The next section argues why it is useful to identify hyperbole, as with metaphor in Metaphor Identification Procedure Vrije Universiteit, at the level of lexical units, and (...) subsequently introduces the steps of HIP. We follow up with two sample analyses of HIP in practice. First, we show how to unitize and analyze one complete sample sentence. Second, we present sample analyses of a number of selected cases. Then we present data showing that HIP can be reliably applied to a sample corpus of Dutch news texts. We end with discussing applications and implications of using HIP in corpus research. (shrink)

In our society, where interest in Buddhist meditation is expanding enormously, numerous scientific studies are now conducted on the neurophysiological effects of meditation practices and on the neural correlates of meditative states. However, very few studies have been conducted on the experience associated with contemplative practice: what it is like to meditate -- from moment to moment, at different stages of practice -- remains almost invisible in contemporary contemplative science. Recently, 'micro-phenomenological' interview methods have been developed to help us become (...) aware of lived experience and describe it with rigour and precision. The present article presents the results of a pilot project1 aimed at applying these methods to the description of meditative experience. The first part of the article describes these methods and their adjustment for the investigation of meditative experience. The second part provides micro- phenomenological descriptions of two processes of which meditation practice enables the practitioner to become aware: the process of losing contact with the current situation and generation of virtual ones in 'mind-wandering' episodes, and the process of emergence of a thought. The third part of the article highlights the interest such descriptions may have for practitioners and for teachers of meditation, defines the status of these results, and outlines directions for further research. (shrink)

The Gesta Normannorum Ducum is one of the most important sources for the history of Normandy and England in the eleventh and twelfth centuries, and contains the earliest prose account of the Norman Conquest. It was written by a succession of authors, the first of whom was William of Jumieges, who wrote for William the Conqueror. Later historians, such as Orderic Vitalis and Robert of Torigni, interpolated and extended the chronicle as far as King Henry I. The later accretions reveal (...) much not only about changing attitudes towards the Norman invasion of England, but also about views of the early Viking foundations of Normandy.Elisabeth van Houts's two-volume edition is based on a study of all forty-seven extant manuscripts of the Gesta, including the earliest surviving copy of c. 1100, unknown until very recently. The full original text of William of Jumieges is supplied, as well as the integral text of the subsequent revisions and additions. Volume I contains Dr van Houts's introduction to the whole work, together with the text and translation of books i-iv. Volume II contains books v-viii. The edition forms an important contribution to our understanding of Anglo-Norman politics. (shrink)

SummaryIntense, sustained nursing lengthens inter-birth intervals and is causally linked with low natural fertility. However, in traditional settings, the effects of such nursing on fertility are difficult to disentangle from those of nutrition. Results from an prospective, direct observational study of reproductive function in well-nourished Amele women who nurse intensively and persistently but who also have high fertility are here presented. Endocrine measures show that ovarian activity resumes by median 11·0 months postpartum. Median duration of postpartum amenorrhoea is 11·3 months, (...) time to next conception is 19·0 months, and the inter-birth interval is 28·0 months. Average life time fertility is 6·8. High fertility in Amele women is due both to refractoriness of reproductive function to suckling stimuli, and to maintenance of equivalent age-specific fertility rates across the reproductive life span. (shrink)

This interview study investigates the short- and long-term implications of incidental findings detected through brain imaging on research participants’ lives and their surroundings. For this study, nine participants of the Rotterdam Scan Study with an incidental finding were approached and interviewed. When examining research participants’ narratives on the impact of the disclosure of incidental findings, the authors identified five sets of tensions with regard to motivations for and expectations of research participation, preferences regarding disclosure, short- and long-term impacts and impacts (...) on self and others. The paper shows: that the impact of incidental findings may be greater than participants at first let on; incidental findings can have significant effects on participants’ social environment; and participants may not feel prepared for disclosure even if incidental findings have been discussed during the informed consent process. The authors call for investigators to be aware of research participants’ experiences and these short- and long-term impacts when designing suitable courses of action for the detection and management of incidental findings in research settings. (shrink)

A self-fulfilling prophecy in neuroprognostication occurs when a patient in coma is predicted to have a poor outcome, and life-sustaining treatment is withdrawn on the basis of that prediction, thus directly bringing about a poor outcome for that patient. In contrast to the predominant emphasis in the bioethics literature, we look beyond the moral issues raised by the possibility that an erroneous prediction might lead to the death of a patient who otherwise would have lived. Instead, we focus on the (...) problematic epistemic consequences of neuroprognostic SFPs in settings where research and practice intersect. When this sort of SFP occurs, the problem is that physicians and researchers are never in a position to notice whether their original prognosis was correct or incorrect, since the patient dies anyway. Thus, SFPs keep us from discerning false positives from true positives, inhibiting proper assessment of novel prognostic tests. This epistemic problem of SFPs thus impedes learning, but ethical obligations of patient care make it difficult to avoid SFPs. We then show how the impediment to catching false positive indicators of poor outcome distorts research on novel techniques for neuroprognostication, allowing biases to persist in prognostic tests. We finally highlight a particular risk that a precautionary bias towards early withdrawal of life-sustaining treatment may be amplified. We conclude with guidelines about how researchers can mitigate the epistemic problems of SFPs, to achieve more responsible innovation of neuroprognostication for patients in coma. (shrink)

Decades of debate about scientific realism notwithstanding, we find ourselves bemused by what different philosophers appear to think it is, exactly. Does it require any sort of belief in relation to scientific theories and, if so, what sort? Is it rather typified by a certain understanding of the rationality of such beliefs? In the following dialogue we explore these questions in hopes of clarifying some convictions about what scientific realism is, and what it could or should be. En route, we (...) encounter some profoundly divergent conceptions of the nature of science and of philosophy. (shrink)

Introduction: In The Netherlands, physicians have to be convinced that the patient suffers unbearably and hopelessly before granting a request for euthanasia. The extent to which general practitioners (GPs), consulted physicians and members of the euthanasia review committees judge this criterion similarly was evaluated. Methods: 300 GPs, 150 consultants and 27 members of review committees were sent a questionnaire with patient descriptions. Besides a “standard case” of a patient with physical suffering and limited life expectancy, the descriptions included cases in (...) which the request was mainly rooted in psychosocial or existential suffering, such as fear of future suffering or dependency. For each case, respondents were asked whether they recognised the case from their own practice and whether they considered the suffering to be unbearable. Results: The cases were recognisable for almost all respondents. For the “standard case” nearly all respondents were convinced that the patient suffered unbearably. For the other cases, GPs thought the suffering was unbearable less often (2–49%) than consultants (25–79%) and members of the euthanasia review committees (24–88%). In each group, the suffering of patients with early dementia and patients who were “tired of living” was least often considered to be unbearable. Conclusions: When non-physical aspects of suffering are central in a euthanasia request, there is variance between and within GPs, consultants and members of the euthanasia committees in their judgement of the patient’s suffering. Possible explanations could be differences in their roles in the decision-making process, differences in experience with evaluating a euthanasia request, or differences in views regarding the permissibility of euthanasia. (shrink)

Sections R1 to R3 attempt to take the sting out of hostile commentaries. Sections R4 to R5 engage Berlin and Kay and the World Color Survey to correct the record. Section R6 begins the formulation of a new theory of colour as an engineering project with a technological developmental trajectory. It is recommended that the colour space be abandoned.

As part of the Dutch national science program “Professional Games for Professional Skills” we developed a stress-exposure biofeedback training in virtual reality for the Dutch police. We aim to reduce the acute negative impact of stress on performance, as well as long-term consequences for mental health by facilitating physiological stress regulation during a demanding decision task. Conventional biofeedback applications mainly train physiological regulation at rest. This might limit the transfer of the regulation skills to stressful situations. In contrast, we provide (...) the user with the opportunity to practice breathing regulation while they carry out a complex task in VR. This setting poses challenges from a technical – as well as from a user-experience perspective. We illustrate how we approach these challenges in our training and hope to contribute a useful reference for researchers and developers in academia or industry who are interested in using biosignals to control elements in a dynamic virtual environment. (shrink)

After Hume, attempts to forge an empiricist epistemology have taken three forms, which I shall call the First, Middle, and Third Way. The First still attempts an a priori demonstration that our cognitive methods satisfy some criterion of adequacy. The Middle Way is pursued under the banners of naturalism and scientific realism, and aims at the same conclusion on non-apriori grounds. After arguing that both fail, I shall describe the general characteristics of the Third Way, an alternative epistemology suitable for (...) empiricism. (shrink)

In this target article the following hypotheses are discussed: (1) Colour is autonomous: a perceptuolinguistic and behavioural universal. (2) It is completely described by three independent attributes: hue, brightness, and saturation: (3) Phenomenologically and psychophysically there are four unique hues: red, green, blue, and yellow; (4) The unique hues are underpinned by two opponent psychophysical and/or neuronal channels: red/green, blue/yellow. The relevant literature is reviewed. We conclude: (i) Psychophysics and neurophysiology fail to set nontrivial constraints on colour categorization. (ii) Linguistic (...) evidence provides no grounds for the universality of basic colour categories. (iii) Neither the opponent hues red/green, blue/yellow nor hue, brightness, and saturation are intrinsic to a universal concept of colour. (iv) Colour is not autonomous. (shrink)

BackgroundAs moral case deliberations (MCDs) have increasingly been implemented in health care institutions as a form of ethics support, it is relevant to know whether and how MCDs actually contribute to positive changes in care. Insight is needed on what actually happens in daily care practice following MCD sessions. This study aimed at investigating the impact of MCD and exploring how ‘impact of MCD’ should be conceptualized for future research.MethodsA multiple-case study was conducted in a care organization for people with (...) intellectual disabilities and/or acquired brain injury, by observing MCD sessions as ‘cases’, followed by interviews with health care professionals concerning the follow-up to these cases, and a focus group with involved MCD facilitators. A conceptual scheme concerning the possible impact formed the basis for analysis: (1) individual moral awareness; (2) the actions of health care professionals; (3) collaboration among health care professionals; (4) the concrete situation of the client; (5) the client’s quality of care and life; (6) the organizational and policy level.ResultsAccording to interviewees, their moral awareness and their collaboration, both among colleagues and with clients’ relatives, improved after MCD. Perceived impact on client situation, quality of care/life and the organizational level varied among interviewees or was difficult to define or link to MCD. Three aspects were added to the conceptual scheme concerning the impact of MCD: (a) preparations and expectations prior to the MCD session; (b) a translational step between the conclusions of the MCD session and practical events in the following period, and (c) collaboration with clients’ relatives. A negative impact of MCD was also found on misunderstandings among participants and disappointment about lack of follow-up.ConclusionsConcretizing and conceptualizing the ‘impact’ of MCD is complicated as many factors play a role either before or during the transition from MCD to practice. It is important to consider ‘impact’ in a broad sense and to relate it to the goals and context of the MCD in question. Future studies in this field should pay additional attention to the preparations, content and process involved in ethics support, including clients’ and relatives’ experiences. (shrink)

Background Since the enactment of the euthanasia law in the Netherlands, there has been a lively public debate on assisted dying that may influence the way patients talk about euthanasia and physician-assisted suicide with their physicians and the way physicians experience the practice of EAS. Aim To show what developments physicians see in practice and how they perceive the influence of the public debate on the practice of EAS. Methods We conducted a secondary analysis of in-depth interviews with 28 Dutch (...) physicians who had experience with a complex case of EAS. Respondents were recruited both by the network of physicians working for SCEN as well as via a national questionnaire, wherein participating physicians could indicate their willingness to be interviewed. Results Three themes came up in analysing the interviews. First, the interviewed physicians experienced a change in what patients would expect from them: from a role as an involved caregiver to being the mere performer of EAS. Second, interviewees said that requests for EAS based on non-medical reasons came up more frequently and wondered if EAS was the right solution for these requests. Last, respondents had the impression that the standards of EAS are shifting and that the boundaries of the EAS regulation were stretched. Conclusions The perceived developments could make physicians less willing to consider a request for EAS. Our results also raise questions about the role of physicians and of EAS in society. (shrink)

A general form is proposed for epistemological theories, the relevant factors being: the family of epistemic judgments, the epistemic state, the epistemic commitment, and the family of possible epistemic inputs. First a simple theory is examined in which the states are probability functions, and the subject of probability kinematics introduced by Richard Jeffrey is explored. Then a second theory is examined in which the state has as constituents a body of information and a recipe that determines the accepted epistemic judgments (...) on the basis of this corpus. Through an examination of several approaches to the statistical syllogism, a relation is again established with Jeffrey's generalized conditionalization. (shrink)

Workplace aggression has been established as a prevalent and detrimental issue in organizations. While numerous studies have documented the important role of leaders in inhibiting or accelerating workplace aggression, a systematic overview of the associations between different leadership styles and workplace aggression as well as its boundary conditions is still lacking. This study reports a meta-analysis investigating the associations between leadership and workplace aggression. Drawing on data from 165 samples, our results revealed that change-oriented, relational-oriented, and values-based and moral leadership (...) were associated with reduced workplace aggression. In contrast, passive and destructive leadership were associated with increased workplace aggression. Importantly, relative weights analyses revealed that ethical leadership was most strongly negatively associated with workplace aggression. Additionally, moderation analyses revealed that the associations between leadership and workplace aggression were, in some cases, moderated by power distance and rating sources, but independent of measurement time lag. Overall, the findings of this meta-analysis highlight the important associations between leadership and workplace aggression. Implications for future research and policy recommendations aiming to reduce workplace aggression are discussed. (shrink)

BackgroundIn research ethics, the most basic question would always be, “which is an ethical issue, which is not?” Interestingly, depending on which ethics guideline we consult, we may have various answers to this question. Though we already have several international ethics guidelines for biomedical research involving human participants, ironically, we do not have a harmonized document which tells us what these various guidelines say and shows us the areas of consensus. In this manuscript, we attempted to do just that.MethodsWe extracted (...) the imperatives from five internationally-known ethics guidelines and took note where the imperatives came from. In doing so, we gathered data on how many guidelines support a specific imperative.ResultsWe found that there is no consensus on the majority of the imperatives and that in only 8.2 % of the imperatives were there at least moderate consensus. Of the 12 clusters, Informed Consent has the highest level of consensus and Research Collaboration and Regulatory Sanctions have the least.ConclusionThere was a lack of consensus in the majority of imperatives from the five internationally-known ethics guidelines. This may be partly explained by the differences among the guidelines in terms of their levels of specification as well as conceptual/ideological differences. (shrink)

BackgroundThe Netherlands is one of the few countries where euthanasia is legal under strict conditions. This study investigates whether Dutch newspaper articles use the term ‘euthanasia’ according to the legal definition and determines what arguments for and against euthanasia they contain.MethodsWe did an electronic search of seven Dutch national newspapers between January 2009 and May 2010 and conducted a content analysis.ResultsOf the 284 articles containing the term ‘euthanasia’, 24% referred to practices outside the scope of the law, mostly relating to (...) the forgoing of life-prolonging treatments and assistance in suicide by others than physicians. Of the articles with euthanasia as the main topic, 36% described euthanasia in the context of a terminally ill patient, 24% for older persons, 16% for persons with dementia, and 9% for persons with a psychiatric disorder. The most frequent arguments for euthanasia included the importance of self-determination and the fact that euthanasia contributes to a good death. The most frequent arguments opposing euthanasia were that suffering should instead be alleviated by better care, that providing euthanasia can be disturbing, and that society should protect the vulnerable.ConclusionsOf the newspaper articles, 24% uses the term ‘euthanasia’ for practices that are outside the scope of the euthanasia law. Typically, the more unusual cases are discussed. This might lead to misunderstandings between citizens and physicians. Despite the Dutch legalisation of euthanasia, the debate about its acceptability and boundaries is ongoing and both sides of the debate are clearly represented. (shrink)

Background In the EU, clinical assessors, rapporteurs and the Committee for Medicinal Products for Human Use are obliged to assess the ethical aspects of a clinical development program and include major ethical flaws in the marketing authorization deliberation processes. To this date, we know very little about the manner that these regulators put this obligation into action. In this paper, we intend to look into the manner and the extent that ethical issues discovered during inspection have reached the deliberation processes. (...) Methods To gather data, we used the Dutch Medicines Evaluation Board database and first searched for the inspections, and their accompanying site inspection reports and integrated inspection reports, related to central marketing authorization applications of drugs submitted to the European Medicines Agency from 2011 to 2015. We then extracted inspection findings that were purely of ethical nature, i.e., those that did not affect the benefit/risk balance of the study. Only findings graded at least major by the inspectorate were included. Lastly, to identify how many of the ethically relevant findings reach the application deliberation processes, we extracted the relevant joint response assessment reports and reviewed the sections that discussed inspection findings. Results From 2011 to 2015, there were 390 processed applications, of which 65 had inspection reports and integrated inspection reports accessible via the database of the Dutch Medicines Evaluation Board. Of the 65, we found ERFs in 37. The majority of the ERFs were graded as major and half of the time it was informed-consent related. A third of these findings were related to research ethics committee processes and requirements. Of the 37 inspections with ERFs, 30 were endorsed in the integrated inspection reports as generally GCP compliant. Day 150 joint response assessment reports and Day 180 list of outstanding issues were reviewed for all 37 inspections, and none of the ERFs were carried over in any of the assessment reports or list of outstanding issues. Conclusion None of the ethically relevant findings, all of which were graded as major or critical in integrated inspection reports, were explicitly carried over to the joint assessment reports. This calls for more transparency in EMA application deliberations on how ERFs are considered, if at all, in the decision-making processes. (shrink)