On 11 September 2019, the verdict was read in the first prosecution of a doctor for euthanasia since the Termination of Life on Request and Assisted Suicide (Review Procedures) Act of 2002 was installed in the Netherlands. The case concerned euthanasia on the basis of an advance euthanasia directive (AED) for a patient with severe dementia. In this paper we describe the review process for euthanasia cases in the Netherlands. Then we describe the case in detail, the judgement of the (...) Regional Review Committees for Termination of Life on Request and Euthanasia (RTE) and the judgement of the medical disciplinary court. Both the review committees and the disciplinary court came to the conclusion there were concerns with this case, which mainly hinged on the wording of the AED. They also addressed the lack of communication with the patient, the absence of oral confirmation of the wish to die and the fact that the euthanasia was performed without the patient being aware of this. However, the doctor was acquitted by the criminal court as the court found she had in fact met all due care criteria laid down in the act. We then describe what this judgement means for euthanasia in the Netherlands. It clarifies the power and reach of AEDs, it allows taking conversations with physicians and the testimony of the family into account when interpreting the AED. However, as a practical consequence the prosecution of this physician has led to fear among doctors about prosecution after euthanasia. (shrink)

The right not to know is underappreciated in policy-making. Despite its articulation in medical law and ethics, policy-makers too easily let other concerns override the right not to know. This observation is triggered by a recent decision of the Dutch government on embryo selection for Huntington’s disease. This is a monogenetic debilitating disease without cure, leading to death in early middle age, and thus is a likely candidate for preimplantation genetic diagnosis. People possibly affected with the Huntington gene do not (...) always want to know their genetic status themselves, which is very burdensome knowledge. For prospective parents, this creates a difficulty in having unaffected children through embryo selection without knowing their own genetic status. A solution is provided by the exclusion test: it allows embryo selection while honouring the parents’ right not to know. The Dutch government however disallowed the exclusion test and chose to allow PGD on Huntington only for parents who test themselves first. To avoid “unnecessary” in-vitro fertilisation procedures for unaffected parents, prospective parents are “forced to know” before they can conceive through embryo selection. This article analyses the scope of the right not to know in the context of embryo selection against Huntington’s disease. It concludes that the right not to know implies that PGD against Huntington should be allowed by means of the exclusion test. (shrink)

In some medical cases there is a moral distinction between killing and letting die, but in others there is not. In this paper I present an original and principled account of the moral distinction between killing and letting die. The account provides both an explanation of the moral distinction and an explanation for why the distinction does not always hold. If these explanations are correct, the moral distinction between killing and letting die must be taken seriously in medical contexts. Defeasibly, (...) when an agent kills she takes responsibility, but when an agent lets die she does not take responsibility. Therein lies the moral distinction between killing and letting die. The distinction, however, is defeated when an agent is already responsible for the surrounding situation. In such cases, killing does not involve taking any further responsibility and letting die does not avoid taking any responsibility. Medical examples are frequently complicated because patients' autonomous choices impact upon medical practitioners' surrounding responsibility. (shrink)

There has been a move in medicine towards patient-centred care, leading to more demands from patients for particular therapies and treatments, and for wish-fulfilling medicine: the use of medical services according to the patient's wishes to enhance their subjective functioning, appearance or health. In contrast to conventional medicine, this use of medical services is not needed from a medical point of view. Boundaries in wish-fulfilling medicine are partly set by a physician's decision to fulfil or decline a patient's wish in (...) practice. In order to develop a better understanding of how wish-fulfilling medicine occurs in practice in The Netherlands, a qualitative study (15 semistructured interviews and 1 focus group) was undertaken. The aim was to investigate the range and kind of arguments used by general practitioners and plastic surgeons in wish-fulfilling medicine. These groups represent the public funded realm of medicine as well as privately paid for services. Moreover, GPs and plastic surgeons can both be approached directly by patients in The Netherlands. The physicians studied raised many arguments that were expected: they used patient autonomy, risks and benefits, normality and justice to limit wish-fulfilling medicine. In addition, arguments new to this debate were uncovered, which were frequently used to justify compliance with a patient's request. Such arguments seem familiar from conventional medicine, including empathy, the patient–doctor relationship and reassurance. Moreover, certain arguments that play a significant role in the literature on wish-fulfilling medicine and enhancement were not mentioned, such as concepts of disease and the enhancement–treatment dichotomy and ‘suspect norms’. (shrink)

abstract Applied ethics engages with concrete moral issues. This engagement involves the application of philosophical tools. When the philosophical tools used in applied ethics are problematic, conclusions about applied problems can become skewed. In this paper, I focus on problems with the idea that comparison cases must be exactly alike, except for the moral issue at hand. I argue that this idea has skewed the debate regarding the moral distinction between killing and letting die. I begin with problems that can (...) arise from attempts to produce comparison cases that are exactly alike, except for the moral issue at hand. I then argue that attempts to produce such examples are doomed to failure. Finally, I argue that abandoning concerns about similarity advances the debate regarding the moral distinction between killing and letting die. (shrink)

Developments in biotechnology present difficult social and ethical challenges that need to be resolved by regulators among others. One crucial problem for regulators of new technologies is to ensure that regulation is both clear and sufficiently flexible to respond to new developments. This is particularly difficult to achieve in contentious fields such as medical biotechnology. In the European Union there is a divergence in the solutions to this problem which has lead to different regulatory frameworks for medical biotechnology. This paper (...) compares and contrasts the British and Dutch regulatory frameworks for the selection of embryos by preimplantation genetic diagnosis as an example of the regulation of medical biotechnology. Some of the outcomes of the regulatory choices and possible reasons behind the divergent frameworks are discussed, such as the ethical outlooks and political systems in these countries. (shrink)

Recent studies indicate that the processing of an unexpected word is costly when the initial, disconfirmed prediction was strong. This penalty was suggested to stem from commitment to the strongly predicted word, requiring its inhibition when disconfirmed. Additional studies show that comprehenders rationally adapt their predictions in different situations. In the current study, we hypothesized that since the disconfirmation of strong predictions incurs costs, it would also trigger adaptation mechanisms influencing the processing of subsequent strong predictions. In two experiments, participants (...) made speeded congruency judgments on two-word phrases in which the first word was either highly constraining or not. We manipulated the proportion of disconfirmed predictions in highly constraining contexts between participants. The results provide additional evidence of the costs associated with the disconfirmation of strong predictions. Moreover, they show a reduction in these costs when participants experience a high proportion of disconfirmed strong predictions throughout the experiment, indicating that participants adjust the strength of their predictions when strong prediction is discouraged. We formulate a Bayesian adaptation model whereby prediction failure cost is weighted by the participant’s belief about the likelihood of encountering the expected word, and show that it accounts for the trial-by-trial data. (shrink)

Health checks identify disease in people without symptoms. They may be offered by the government through population screenings and by other providers to individual users as ‘personal health checks’. Health check providers’ perspective of ‘good’ health checks may further the debate on the ethical evaluation and possible regulation of these personal health checks. In 2015, we interviewed twenty Dutch health check providers on criteria for ‘good’ health checks, and the role these criteria play in their practices. Providers unanimously formulate a (...) number of minimal criteria: Checks must focus on treatable/preventable disease; Tests must be reliable and clinically valid; Participation must be informed and voluntary; Checks should provide more benefits than harms; Governmental screenings should be cost-effective. Aspirational criteria mentioned were: Follow-up care should be provided; Providers should be skilled and experienced professionals that put the benefit of users first; Providers should take time and attention. Some criteria were contested: People should be free to test on any disease; Health checks should only be performed in people at high risk for disease that are likely to implement health advice; Follow up care of privately funded tests should not drain on collective resources. Providers do not always fulfil their own criteria. Their reasons reveal conflicts between criteria, conflicts between criteria and other ethical values, and point to components in the organisation of health care that hinder an ethical provision of health checks. Moreover, providers consider informed consent a criterion that is hard to establish in practice. According to providers, personal health checks should meet the same criteria as population screenings, with the exception of cost-effectiveness. Providers do not always fulfil their own criteria. Results indicate that in thinking about the ethics of health checks potential conflicts between criteria and underlying values should be explicated, guidance in weighing of criteria should be provided and the larger context should be taken into account: other actors than providers need to take up responsibility, and ideally benefits and harms of health checks should be weighed against other measures targeting disease. (shrink)

Health checks or health screenings identify disease in people without a specific medical indication. So far, the perspective of health check users has remained underexposed in discussions about the ethics and regulation of health checks. In 2017, we conducted a qualitative study with lay people from the Netherlands. We asked what participants consider characteristics of good and bad health checks, and whether they saw a role for the Dutch government. Participants consider a good predictive value the most important characteristic of (...) a good health check. Information before, during and after the test, knowledgeable and reliable providers, tests for treatable disease, respect for privacy, no unnecessary health risks and accessibility are also mentioned as criteria for good health checks. Participants make many assumptions about health check offers. They assume health checks provide certainty about the presence or absence of disease, that health checks offer opportunities for health benefits and that the privacy of health check data is guaranteed. In their choice for provider and test they tend to rely more on heuristics than information. Participants trust physicians to put the interest of potential health check users first and expect the Dutch government to intervene if providers other than physicians failed to do so by offering tests with a low predictive value, or tests that may harm people, or by infringing the privacy of users. Assumptions of participants are not always justified, but they may influence the choice to participate. This is problematic because choices for checks with a low predictive value that do not provide health benefits may create uncertainty and may cause harm to health; an outcome diametrically opposite to the one intended. Also, this may impair the relationship of trust with physicians and the Dutch government. To further and protect autonomous choice and to maintain trust, we recommend the following measures to timely adjust false expectations: advertisements that give an accurate impression of health check offers, and the installation of a quality mark. (shrink)

Even in the Netherlands, where the practice of physician-assisted death (PAD) has been legalized for over 20 years, there is no such thing as a ‘right to die’. Especially patients with extraordinary requests, such as a wish for PAD based on psychiatric suffering, advanced dementia, or (a limited number of) multiple geriatric syndromes, encounter barriers in access to PAD. In this paper, we discuss whether these barriers can be justified in the context of the Dutch situation where PAD is legally (...) permitted for those who suffer unbearably and hopelessly as a result of medical conditions. Furthermore, we explore whether there are options to address some of the barriers or their consequences, both within the Dutch legal framework or by adjusting the legal framework, and whether these options are feasible. We conclude that although there are insufficient arguments to overrule the doctor’s freedom of conscience in the Netherlands, there are ways to address some of the barriers, mainly by offering support to doctors that would be willing to support a request. Moreover, we believe it is morally required to reduce or mitigate where possible the negative consequences of the barriers for patients, such as the long waiting time for those who suffer from psychiatric disorders, because it is unlikely the adjustments suggested to the system will ensure reasonable access for these patient groups. (shrink)

Health checks identify disease in individuals without a medical indication. More and more checks are offered by more providers on more risk factors and diseases, so we may speak of an omnipresence of health checks. Current ethical evaluation of health checks considers checks on an individual basis only. However, omnipresent checks have effects over and above the effects of individual health checks. They might give the impression that health is entirely manageable by individual actions and strengthen the norm of individual (...) responsibility for health to the point where people hold themselves and others responsible for health outcomes they cannot reasonably be held accountable for. This process of so-called ‘over-responsibilization’ may result in increased feelings of guilt over health, decreased health solidarity and unfairly distributed health outcomes. Moreover, effects on privacy and peace of mind may be observed. Taking into account all possible harms and benefits of health checks in their ethical evaluation requires evaluation of health checks on an individual basis as well as on the level of all checks. Therefore, we urge the amendment of existing ethical evaluation to include the effects of an omnipresence of health checks. We make a first attempt at the formulation of amended criteria. (shrink)

Cardiovascular health checks test risk factors for cardiovascular disease. They are offered to improve health: in case of an increased risk, participants receive lifestyle advice and medication. With this review, we investigate what is known about the reasons why people do or do not test for CVD risk factors. To what extent do these reasons relate to health monitoring and/or improvement? And do reasons differ in different contexts in which health checks are offered? We conducted a literature search and included (...) 22 papers in which we identified a broad range of motives. We conclude that people have reasons to test related to health improvement and reasons other than health improvement, practical reasons related to the way health checks are offered play an important role and motives should be understood in the context of the situation in which health checks are offered. Our results are relevant for public health officials and providers of health checks: first, if people undergo testing for reasons unrelated to health, this could explain why participation in health checks does not necessarily lead to health improvement. Second, efforts to improve uptake not necessarily serve justice and may hamper informed consent. (shrink)

As they process complex linguistic input, language comprehenders must maintain a mapping between lexical items (e.g., morphemes) and their syntactic position in the sentence. We propose a model of how these morpheme-position bindings are encoded, maintained, and reaccessed in working memory, based on working memory models such as “serial-order-in-a-box” and its SOB-Complex Span version. Like those models, our model of linguistic working memory derives a range of attested memory interference effects from the process of binding items to positions in working (...) memory. We present simulation results capturing similarity-based interference as well as item distortion effects. Our model provides a unified account of these two major classes of interference effects in sentence processing, attributing both types of effects to an associative memory architecture underpinning linguistic computation. (shrink)

Formulating sound and acceptable embryo research policy remains challenging especially in a pluralistic world. This challenge has acquired a new dimension of complexity with the advent of so-called embryo models, which are derived from stem cells. In this article, we present a normative strategy to facilitate the process of sound policy-making in the field of human embryology. This strategy involves seeking neutral agreements on higher level theories and doctrines as well as seeking agreements on the level of concrete policy proposals. (...) We call this strategy: going high and low. By going high and low, the plurality of reasonable moral and epistemic convictions of stakeholders involved in the domain of human embryology is respected while the process of policy-making in this area is improved. (shrink)

Prenatal expectations about what children will be like after birth may provide a context for how parents perceive their infant's actual temperament. We examined how these expectations and perceptions are associated and together predict early parenting behavior, with parenting behavior in turn predicting changes in temperament. Reports of 125 families about their expectations of their unborn child's temperament, their infant's temperament at 4 and 12 months post-partum, and their hostile, responsive, warm, and overprotective parenting were included. We also included data (...) from an independent sample of 168 mothers, with the same measures, except that mothers reported on Big Five personality traits at T1. Results indicated that in both samples, parents' expectations were positively associated with perceptions of infant temperament. Prenatal expectations and newborn temperament independently predicted parenting behavior, and maternal and paternal parenting in turn predicted infant temperament at T3, controlling for infant temperament at T2. Although overall findings indicated associations between a more difficult temperament and more negative/less positive parenting, significant combinations of specific traits and parenting behaviors were sample-specific—indicating that more research is necessary to draw a conclusion about specific links. Both maternal and paternal expectations about their unborn child's temperament appear to carry over into the postpartum reality and provide a context for shaping early interactions between caregivers and their children, which may further shape the developing temperament of the child. (shrink)

IntroductionIDIS is a multidisciplinary journal with a focus on identity in the information society. The information society is usually associated with information and communication technologies, such as computers, mobile phones and the Internet, and with information in the form of computer- or human-readable data. In this special issue on genetics, information and identity, however, we focus on a different type of information, namely genetic information. The DNA of the human genome is often called a ‘blueprint’ of human life, containing information (...) that regulates—in various and very complex ways—most of the processes in human life. In this sense, genetics may well be considered an information technology in its own right.Genetic information is becoming ever more important in society, although current knowledge of the human genome and how the genome relates to human life is still limited. Nevertheless, what knowledge we have about the genetic make-up of people—whether in terms of congen .. (shrink)

Benz is a most prolific writer on the history of speculative theology and theosophy and he is especially well-known for his studies on Oetinger and Swedenborg, but at the beginning of his long career he devoted several books to earlier doctrinal developments. There have been many other serious attempts at a comprehensive exposition of the evolution of the different branches of Franciscan theology but the present one is especially interesting because of its strong speculative foundations. Although speculative, these foundations do (...) not prevent a continual elaboration of the political context of the genesis of ideas. From the "predecessor" Joachin da Fiore through Saint Francis himself, to the little known figures of Angelo Clareno, and Olivi and Arnoldo da Villanova, we see the unfolding of the eschatologically orientated theories of the "spiritual church," the challenge which they represented to the "official" theology of the late middle ages, and the ways they were neutralized by the Church of Rome. The book is dealing with more than obscure heresies of remote ages: it expounds issues and ideas which foreshadow and anticipate German Idealism's philosophy of history.--M. J. V. (shrink)