Lies and deception are often used in the care for demented elderly and often with the best intentions. However, there is a strong moral presumption against all forms of lying and deceiving. The goal of this article is to examine and evaluate concrete examples of deception and lies in dementia care, while addressing some fundamental issues in the process.It is argued that because dementia slowly diminishes the capacities one needs to distinguish between truths and falsehoods, the ability to be lied (...) to also disappears. When the moral reasons to reject lying are explored, it becomes clear that most of them also hold where demented patients are concerned, though this also depends on the capacities of the patient. Lying, though prima facie wrong, can sometimes be justified with an appeal to well-being. The relationship between well-being and the truth is further explored. Two examples of deceiving demented patients for reasons of beneficence are discussed, from which it can be concluded that although in some cases beneficent lies or deception will not enhance patients’ well-being, there are circumstances in which they do. In general, methods that enhance the well-being of the patient without deception or lies should be favored above options that use deceit, and methods of getting the truth across without hurting the patient should be favored above blunt honesty. Finally, it is important to note that not only the patient but also the nursing and medical staff can be affected by the use of lies and deception. (shrink)

In the hope of future treatments to prevent or slow down the disease, there is a strong movement towards an ever-earlier detection of Alzheimer's disease. In conjunction with scientific developments, this has prompted a reconceptualization of AD, as a slowly progressive pathological process with a long asymptomatic phase. New concepts such as "preclinical" and "prodromal" AD have been introduced, raising a number of conceptual and ethical questions. We evaluate whether these new concepts are theoretically defensible, in light of theories of (...) health and disease, and whether they should be understood as disease or as an at-risk state. We introduce a pragmatic view on disease concepts and argue that an evaluation of the reconceptualization of AD should also take its aims and effects into account, and assess their ethical acceptability. The reconceptualization of AD is useful to coordinate research into preventive strategies, and may potentially benefit future patients. However, in the short term, early detection and labelling of "preclinical AD" can potentially harm people. Since there is no treatment available and the predictive value is unclear, it may only create a group of "patients in waiting" who may suffer from anxiety, uncertainty and stigmatization, but will never actually develop dementia. We conclude that only if the promise of preventive medication materializes, will the reconceptualization of AD turn out unequivocally to be for the better. Otherwise, the reconceptualization may do more harm than good. (shrink)

Deep Brain Stimulation (DBS) is a treatment involving the implantation of electrodes into the brain. Presently, it is used for neurological disorders like Parkinson’s disease, but indications are expanding to psychiatric disorders such as depression, addiction and Obsessive Compulsive Disorder (OCD). Theoretically, it may be possible to use DBS for the enhancement of various mental functions. This article discusses a case of an OCD patient who felt very happy with the DBS treatment, even though her symptoms were not reduced. First, (...) it is explored if the argument that ‘doctors are not in the business of trading happiness’, as used by her psychiatrist to justify his discontinuation of the DBS treatment, holds. The relationship between enhancement and the goals of medicine is discussed and it is concluded that even though the goals of medicine do not set strict limits and may even include certain types of enhancement, there are some good reasons for limiting the kind of things doctors are required or allowed to do. Next, the case is discussed from the perspective of beneficence and autonomy. It is argued that making people feel good is not the same as enhancing their well-being and that it is unlikely—though not absolutely impossible—that the well-being of the happy OCD patient is really improved. Finally, some concerns regarding the autonomy of a request made under the influence of DBS treatment are considered. (shrink)

This article addresses the ability of Parallel Distributed Processing (PDP) networks to generate stagewise cognitive development in accordance with Piaget's theory of cognitive epigenesis. We carried out a replication study of the simulation experiments by McClelland (1989) and McClelland and Jenkins (1991) in which a PDP network learns to solve balance scale problems. In objective tests motivated from catastrophe theory, a mathematical theory of transitions in epigenetical systems, no evidence for stage transitions in network performance was found. It is concluded (...) that PDP networks lack the ability to recover the positive outcomes of analogous catastrophe analyses of real cognitive developmental data. In an attempt to further characterize the learning behaviour of PDP networks, we carried out a second simulation study using the discrimination‐shift paradigm. The results thus obtained indicate that PDP learning is compatible with the learning of stimulus‐response relationships, not with the acquisition of mediating rules such as conceived in (neo‐)Piagetian theory. In closing, we speculate about the feasibility of simulating stagewise development with alternative network architectures. (shrink)

The hopes and fears expressed in the debate on human enhancement are not always based on a realistic assessment of the expected possibilities. Discussions about extreme scenarios may at times obscure the ethical and policy issues that are relevant today. This paper aims to contribute to an adequate and ethically sound societal response to actual current developments. After a brief outline of the ethical debate concerning neuro-enhancement, it describes the current state of the art in psychopharmacological science and current uses (...) of psychopharmacological enhancement, as well as the prospects for the near future. It then identifies ethical issues regarding psychopharmacological enhancements that require attention from policymakers, both on the professional and on the governmental level. These concern enhancement research, the gradual expansion of medical categories, off-label prescription and responsibility of doctors, and accessibility of enhancers on the Internet. It is concluded that further discussion on the advantages and drawbacks of enhancers on a collective social level is still needed. (shrink)

Brain-machine interfaces are a growing field of research and application. The increasing possibilities to connect the human brain to electronic devices and computer software can be put to use in medicine, the military, and entertainment. Concrete technologies include cochlear implants, Deep Brain Stimulation, neurofeedback and neuroprosthesis. The expectations for the near and further future are high, though it is difficult to separate hope from hype. The focus in this paper is on the effects that these new technologies may have on (...) our ‘symbolic order’—on the ways in which popular categories and concepts may change or be reinterpreted. First, the blurring distinction between man and machine and the idea of the cyborg are discussed. It is argued that the morally relevant difference is that between persons and non-persons, which does not necessarily coincide with the distinction between man and machine. The concept of the person remains useful. It may, however, become more difficult to assess the limits of the human body. Next, the distinction between body and mind is discussed. The mind is increasingly seen as a function of the brain, and thus understood in bodily and mechanical terms. This raises questions concerning concepts of free will and moral responsibility that may have far reaching consequences in the field of law, where some have argued for a revision of our criminal justice system, from retributivist to consequentialist. Even without such a (unlikely and unwarranted) revision occurring, brain-machine interactions raise many interesting questions regarding distribution and attribution of responsibility. (shrink)

Alzheimer’s Disease (AD) provides an excellent case study to investigate emerging conceptions of health, disease, pre-disease, and risk. Two scientific working groups have recently reconceptualized AD and created a new category of asymptomatic biomarker positive persons, who are either said to have preclinical AD, or to be at risk for AD. This article examines how prominent theories of health and disease would classify this condition: healthy or diseased? Next, the notion of being “at risk”—a state somewhere in-between health and disease—is (...) considered from various angles. It is concluded that medical-scientific developments urge us to let go of dichotomous ways of understanding disease, that the notion of “risk,” conceptualized as an increased chance of getting a symptomatic disease, might be a useful addition to our conceptual framework, and that we should pay more attention to the practical usefulness and implications of the ways in which we draw lines and define concepts. (shrink)

One argument that is frequently invoked against the technological enhancement of human functioning is that it is morally suspect, or even wrong, to take an easy shortcut. Some things that usually take effort, endurance or struggle can come easily with the use of an enhancer. This paper analyses the various arguments that circle round the idea that enhancement of human functioning is problematic because of the 'easy shortcut' that it offers. It discusses the concern that quick fixes lead to corrosion (...) of character and the idea that suffering, pain, hard work and effort are essential for real and worthy achievements, and argues that these views are largely mistaken. Next, the paper argues that the core worry about taking an easy shortcut is that it makes us lose sight of the complexities of our means and ends; in other words, the argument warns against reducing the richness of human activities. A vocabulary of 'practices', 'internal goods' and 'focal engagement' will be used to articulate this argument further. The conclusion is that the easy shortcut argument has no general validity as an argument against enhancement 'as such'. The paper urges us, however, to evaluate enhancement technologies not only in terms of their efficiency in reaching certain goals but also in terms of their contribution to intrinsically worthwhile human activities. It can point out some of the caveats, as well as the opportunities, of the use of enhancement technologies. (shrink)

This article addresses the ability of Parallel Distributed Processing (PDP) networks to generate stagewise cognitive development in accordance with Piaget's theory of cognitive epigenesis. We carried out a replication study of the simulation experiments by McClelland (1989) and McClelland and Jenkins (1991) in which a PDP network learns to solve balance scale problems. In objective tests motivated from catastrophe theory, a mathematical theory of transitions in epigenetical systems, no evidence for stage transitions in network performance was found. It is concluded (...) that PDP networks lack the ability to recover the positive outcomes of analogous catastrophe analyses of real cognitive developmental data. In an attempt to further characterize the learning behaviour of PDP networks, we carried out a second simulation study using the discrimination‐shift paradigm. The results thus obtained indicate that PDP learning is compatible with the learning of stimulus‐response relationships, not with the acquisition of mediating rules such as conceived in (neo‐)Piagetian theory. In closing, we speculate about the feasibility of simulating stagewise development with alternative network architectures. (shrink)

ABSTRACTHumiliation lacks an empirically derived definition, sometimes simply being equated with shame. We approached the conceptualisation of humiliation from a prototype perspective, identifying 61 features of humiliation, some of which are more central to humiliation than others. Prototypical humiliation involved feeling powerless, small, and inferior in a situation in which one was brought down and in which an audience was present, leading the person to appraise the situation as unfair and resulting in a mix of emotions, most notably disappointment, anger, (...) and shame. Some of the features overlapped with those of shame whereas other features overlapped with those of anger. Which specific features are present may determine whether the humiliation experience becomes more shame- or anger-like. (shrink)

Human enhancement is the term used for applications of biomedical knowledge that aim to improve human form or functioning beyond what is necessary to restore or sustain good health. Genomics is one of the research-areas that promises to offer such possibilities in the near future, and body weight - especially over-weight and obesity - is one of the human characteristics at which these will be directed. This paper offers an overview of some of the moral issues that the subject of (...) enhancement raises when related to obesity and genomics. After a brief discussion of the different perspectives on obesity and on the meaning of the term enhancement, a framework is presented in which the moral issues at stake are organised according to perspective on obesity (health or aesthetics) and moral outlook (distributive justice vs private morality). An inventory is made of the different ethical discussions that possible future genomics-based options for the prevention or treatment of obesity and overweight may evoke. These include justice, obligations with regard to life-style, the limits of medical practice and the value of food and food-cultures. Finally, some speculations are made with regard to future possibilities for genetic modification and "self-evolution". (shrink)

It may seem paradoxical to speak of the ‘goodlife’ for demented elderly. Many people consider dementia to be a life-wrecking disease and nursing homes to be terrible places. Still, it is relevant to ask how we can make life as good as possible for demented nursing home residents. This paper explores what three standard philosophical accounts of well-being — subjective preference theory, objectivist theories, and hedonism — have to say about the good life for demented people. It is concluded that (...) the relevant differences between the various philosophical theories manifest themselves not so much in their general account of the substantial content of ‘the good life’ but in a number of specific controversies. These concern the nature of well-being, the necessity of endorsement by the patient, the value of experience and the need for experiences to be rooted in reality. Moreover, it is argued that further research should pay detailed attention to the process of dementia and to the effects of this process on patients' identities, self-conceptions, capacities, preferences, values and the like, and that a narrative approach which incorporates the factor time may offer a more comprehensive account of the good life for demented elderly. (shrink)

This paper analyses the formation of power of the Christian regime of truth in the context of Foucault’s concept of strategic formations. The main emphasis is on the sexual formation of power in three focal points of its agency. The first focal point is formed around the conflict between the Old Testament truth regime and the Canaan cult of fertility. The second focal point is formed around the influence of ancient philosophical thought, primarily through the philosophy of stoicism, which sees (...) abstinence from the sexual act as an opening to divine inspiration and around medical knowledge of antiquity. The third focal point is formed around control mechanisms of the Christian regime of truth through classification, regulation, prohibition, tariffing offences and corrections of doctrine. The main purpose of the formation of power is the vertical structuring of the regime of truth in its anthropomorphic and androcentric immanence. (shrink)

Ethics teachers are regularly confronted with disturbing cases brought in by medical students in class. These classes are considered confidential, so that everyone can speak freely about their experiences. But what should ethics teachers do when they hear about a situation they consider to be outright alarming, for example where patients/students’ safety is at stake or where systematic power abuse seems to be at hand? Should they remain neutral or should they step in and intervene? In the Netherlands, as in (...) many other countries, there are no clear guidelines for ethics teachers on how to respond. To get more insight into what teachers themselves think a proper response would be, we interviewed 18 Dutch medical ethics teachers. We found that Dutch ethics teachers will address the issue in class, but that they are overall reluctant to intervene; take action outside the scope of class. This reluctance is partly rooted in the conviction that ethicists should stay neutral and facilitate reflection, instead of telling students or physicians what to do. At the same time, this neutral position seems a difficult place to leave for those teachers who would want to or feel they need to. This has to do with various organizational and institutional constraints tied up with their position. The study invites medical ethics teachers to reflect on these constraints together and think about how to proceed from there. This study seeks to contribute to research on cultural change in medicine and medical students’ experiences of moral distress. (shrink)

The use of psychopharmaceuticals to enhance human mental functioning such as cognition and mood has raised a debate on questions regarding identity and authenticity. While some hold that psychopharmaceutical substances can help users to ‘become who they really are’ and thus strengthen their identity and authenticity, others believe that the substances will lead to inauthenticity, normalization, and socially-enforced adaptation of behaviour and personality. In light of this debate, we studied how persons who actually have experience with the use of psychopharmaceutical (...) medication would view their ‘self’ or their authentic personal identity in relation to the use of medication. We have interviewed a number of adults diagnosed with ADHD and discussed their experiences with medication use in relation to their conceptions of self and identity. In the first part of this paper we illustrate that the concepts of identity and authenticity play an important and sometimes problematic role in experiences of ADHD adults. This shows that the question about identity and psychopharmacology is not merely an ‘academic’ issue, but one that influences everyday lives of real people. In order to answer the question whether psychopharmaceuticals threaten personal identity and authenticity, more than empirical research is needed. We also need to analyse the concepts of personal identity, authenticity and self: what do we mean when we are using statements as ‘a way of living that is uniquely our own’, ‘our true self’, or ‘who we really are’? In the second part of this paper we discuss two important philosophical views on personal identity, authenticity and self: the self-control view as elaborated by Frankfurt, and the self-expression view as proposed by Schechtman. We compare these with the experiences of our respondents to see which view can help us to understand the diverse and often conflicting experiences that people have with medication for ADHD. This will contribute to a better understanding of whether and in which cases personal identity and authenticity are threatened by psychopharmacology. (shrink)

Strategic games require reasoning about other people’s and one’s own beliefs or intentions. Although they have clear commonalities with psychological tests of theory of mind, they are not clearly related to theory of mind tests for children between 9 and 10 years of age “Flobbe et al. J Logic Language Inform 17(4):417–442 (2008)”. We studied children’s (5–12 years of age) individual differences in how they played a strategic game by analyzing the strategies that they applied in a zero, first, and (...) second-order reasoning task. For the zero-order task, we found two subgroups with different accuracy levels. For the first-order task, subgroups of children applied different suboptimal strategies or an optimal strategy. For the second-order task only suboptimal strategies were present. Strategy use for all tasks was related to age. The 5- and 6-year old children were additionally tested on theory of mind understanding and executive functioning. Strategy-use in these children was related to working memory, but not to theory of mind after correction for age, verbal ability and general IQ. (shrink)

A central issue in the ethical debate on psychopharmacological enhancers concerns the distinction between therapy and enhancement. Although from a theoretical point of view it is difficult to make a clear-cut distinction between treatment on the one hand, and enhancement on the other, in medical practice and policy debates the counter-positioning of therapy to enhancement is clearly at work. Especially pharmaceutical companies have an interest in occupying the "grey" area between normal and abnormal, treatment and enhancement. This article discusses the (...) dynamics of the treatment-enhancement distinction, and argues that practices that could be labelled "enhancement" can also be understood in terms of medicalisation and "disease mongering". The argument is supported by results from a qualitative empirical study into the experiences and opinions of adults diagnosed with Attention Deficit Hyperactivity Disorder. Patients are ambivalent about how to understand ADHD: as a disease, a disorder or a normal variation. Intervention with psychopharmacological means can also be understood in different ways. From an insider perspective it is conceived of as a "normalising" of functioning, whereas from an outsider perspective it can be understood as medicalisation of underperformance, or indeed as performance enhancement. This draws attention to new moral issues which are important but under-recognised in the enhancement debate, and which are related to medicalisation. (shrink)

This paper is a reaction to an article by John Arras published earlier in this journal. In this article Arras argues that “freestanding pragmatism” has little new to offer to bioethics. We respond to some of Arras' arguments and conclude that, although he overstates his case at certain points, his critique is, broadly speaking, correct. We then introduce and discuss an alternative approach to pragmatist ethics, one which puts to work the ideas and insights of pragmatism conceived as a broad (...) philosophical movement, without lapsing into a canon dependent approach. The approach we propose exhibits a number of characteristics that differ from Arras'saccount of freestanding pragmatism and offers something new to bioethics. (shrink)

:In this article, we consider contexts or domains in which moral bioenhancement interventions possibly or most likely will be implemented. By looking closely at similar or related existing practices and their relevant ethical frameworks, we hope to identify ethical considerations that are relevant for evaluating potential moral bioenhancement interventions. We examine, first, debates on the proper scope of moral education; second, proposals for identifying early risk factors for antisocial behaviour; and third, the difficult balancing of individual freedom and third party (...) concerns in psychiatry. In imagining moral bioenhancement in practice, we observe that unlike other forms of enhancement, moral enhancement fundamentally asks how the interests and preferences of the individual and the interests of others should be weighed. Highly diverse domains such as education, mental health, and the judicial domain might be involved, and moral bioenhancement might challenge existing institutional settings. Given these highly varied contexts and domains, it appears unlikely that there will be a distinct set of practices that will be referred to as “moral bioenhancement.”. (shrink)

In a discussion about human enhancement it is common to make a distinction between medical treatment and enhancement. The treatment‐enhancement (TE) distinction may work as long as we are faced with extreme and evident examples of treatments and enhancements, but it leaves us with unanswered questions if we are confronted with the borderlines cases in the muddy gray area between obvious treatment and obvious enhancement. This chapter focuses on this gray area, shows its complexities, and asks how we can answer (...) questions regarding the medical domain, or regarding the moral obligation for reimbursement if we cannot depend on the TE distinction. The example of adult attention deficit hyperactivity disorder (ADHD) is used to show how difficult it is to distinguish between treatment of disease and enhancement of normal function, especially given the phenomena of medicalization, disease mongering, and expanding disease definitions. (shrink)

A distinction should be made between the formation of stimulus-driven associations and cognitive concepts. To test the learning mode of a neural network, we propose a simple and classic input-output test: the discrimination shift task. Feed-forward PDP models appear to form stimulus-driven associations. A Hopfield network should be extended to apply the test.

The use of psychopharmaceuticals to enhance human mental functioning such as cognition and mood has raised a debate on questions regarding identity and authenticity. While some hold that psychopharmaceutical substances can help users to ‘become who they really are’ and thus strengthen their identity and authenticity, others believe that the substances will lead to inauthenticity, normalization, and socially-enforced adaptation of behaviour and personality. In light of this debate, we studied how persons who actually have experience with the use of psychopharmaceutical (...) medication would view their ‘self’ or their authentic personal identity in relation to the use of medication. We have interviewed a number of adults diagnosed with ADHD and discussed their experiences with medication use in relation to their conceptions of self and identity. In the first part of this paper we illustrate that the concepts of identity and authenticity play an important and sometimes problematic role in experiences of ADHD adults. This shows that the question about identity and psychopharmacology is not merely an ‘academic’ issue, but one that influences everyday lives of real people. In order to answer the question whether psychopharmaceuticals threaten personal identity and authenticity, more than empirical research is needed. We also need to analyse the concepts of personal identity, authenticity and self: what do we mean when we are using statements as ‘a way of living that is uniquely our own’, ‘our true self’, or ‘who we really are’? In the second part of this paper we discuss two important philosophical views on personal identity, authenticity and self: the self-control view as elaborated by Frankfurt, and the self-expression view as proposed by Schechtman. We compare these with the experiences of our respondents to see which view can help us to understand the diverse and often conflicting experiences that people have with medication for ADHD. This will contribute to a better understanding of whether and in which cases personal identity and authenticity are threatened by psychopharmacology. (shrink)

One of the reasons why moral enhancement may be controversial, is because the advantages of moral enhancement may fall upon society rather than on those who are enhanced. If directed at individuals with certain counter-moral traits it may have direct societal benefits by lowering immoral behavior and increasing public safety, but it is not directly clear if this also benefits the individual in question. In this paper, we will discuss what we consider to be moral enhancement, how different means may (...) be used to achieve it and whether the means we employ to reach moral enhancement matter morally. Are certain means to achieve moral enhancement wrong in themselves? Are certain means to achieve moral enhancement better than others, and if so, why? More specifically, we will investigate whether the difference between direct and indirect moral enhancement matters morally. Is it the case that indirect means are morally preferable to direct means of moral enhancement and can we indeed pinpoint relevant intrinsic, moral differences between both? We argue that the distinction between direct and indirect means is indeed morally relevant, but only insofar as it tracks an underlying distinction between active and passive interventions. Although passive interventions can be ethical provided specific safeguards are put in place, these interventions exhibit a greater potential to compromise autonomy and disrupt identity. (shrink)

To gain insight into the reasons that the public may have for endorsing or eschewing pharmacological moral enhancement for themselves or for others, we used empirical tools to explore public attitudes towards these issues. Participants from the United States were recruited via Amazon’s Mechanical Turk and were randomly assigned to read one of several contrastive vignettes in which a 13-year-old child is described as bullying another student in school and then is offered an empathy-enhancing program. The empathy-enhancing program is described (...) as either involving taking a pill or playing a video game on a daily basis for four weeks. In addition, participants were asked to imagine either their own child bullying another student at school, or their own child being bullied by another student. This resulted in a 2 × 2 between-subjects design. In an escalating series of morally challenging questions, we asked participants to rate their overall support for the program; whether they would support requiring participation; whether they would support requiring participation of children who are at higher risk to become bullies in the future; whether they would support requiring participation of all children or even the entire population; and whether they would be willing to participate in the program themselves. We found that people were significantly more troubled by pharmacological as opposed to non-pharmacological moral enhancement interventions. The results indicate that members of the public for the greater part oppose pharmacological moral bioenhancement, yet are open to non-biomedical means to attain moral enhancement. [248 words]. (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)

Studies have shown that students may feel emotional discomfort when they are asked to identify ethical problems which they have encountered during their training. Teachers in medical ethics, however, more often focus on the cognitive and rational ethical aspects and not much on students’ emotions. The purpose of this qualitative study was to explore students’ feelings and emotions when dealing with ethical problems during their clinical training and explore differences between two countries: Indonesia and the Netherlands. We observed a total (...) of eighteen ethics group discussions and interviewed fifteen medical students at two medical schools. Data were interpreted and analyzed using content analysis. We categorized students’ negative emotions based on their objects of reflection and came up with three categories: emotions concerning their own performance, emotions when witnessing unethical behaviors, and emotions related to barriers and limitations of their working environment. Our study suggests that addressing emotional responses in a culturally sensitive way is important to develop students’ self-awareness. Teachers should be able to guide students to reflect on and be critical of their own thoughts and emotions, to understand their own moral values, especially when confronted with other individuals. (shrink)

Vardanyan's theorem states that the set of PA-valid principles of Quantified Modal Logic, QML, is complete Π0 2. We generalize this result to a wide class of theories. The crucial step in the generalization is avoiding the use of Tennenbaum's Theorem.

Quality of life is an important outcome measure in mental health care. Currently, QoL is mainly measured with paper and pencil questionnaires. To contribute to the evaluation of treatment, and to enhance substantiated policy decisions in the allocation of resources, a web-based, personalized, patient-friendly and easy to administer QoL instrument has been developed: the QoL-ME. While human values play a significant role in shaping future use practices of technologies, it is important to anticipate on them during the design of the (...) QoL-instrument. The value sensitive design approach offers a theory and method for addressing these values in a systematic and principled manner in the design of technologies. While the VSD approach has been applied in the field of somatic care, we extended the VSD approach to the field of mental healthcare with the aim to enable developers of the QoL-instrument to reflect on important human values and anticipate potential value conflicts in its design. We therefore explored how VSD can be used by investigating the human values that are relevant for the design of the QoL-ME. Our exploration reveals that the values autonomy, efficiency, empowerment, universal usability, privacy, redifinition of roles, of responsibilites, reliability, solidarity, surveillance and trust are at stake for the future users of the technology. However, we argue that theoretical reflections on the potential ethical impact of a technology in the design phase can only go so far. To be able to comprehensively evaluate the usability the VSD approach, a supplementary study of the use practices of the technology is needed. (shrink)

HIV remission clinical researchers are increasingly seeking study participants who are diagnosed and treated during acute HIV infection—the brief period between infection and the point when the body creates detectable HIV antibodies. This earliest stage of infection is often marked by flu-like illness and may be an especially tumultuous period of confusion, guilt, anger, and uncertainty. Such experiences may present added ethical challenges for HIV research recruitment, participation, and retention. The purpose of this paper is to identify potential ethical challenges (...) associated with involving acutely diagnosed people living with HIV in remission research and considerations for how to mitigate them. We identify three domains of potential ethical concern for clinicians, researchers, and ethics committee members to consider: 1) Recruitment and informed consent; (2) Transmission risks and partner protection; and (3) Ancillary and continuing care. We discuss each of these domains with the aim of inspiring further work to advance the ethical conduct of HIV remission research. For example, experiences of confusion and uncertainty regarding illness and diagnosis during acute HIV infection may complicate informed consent procedures in studies that seek to recruit directly after diagnosis. To address this, it may be appropriate to use staged re-consent procedures or comprehension assessment. Responsible conduct of research requires a broad understanding of acute HIV infection that encompasses its biomedical, psychological, social, and behavioral dimensions. We argue that the lived experience of acute HIV infection may introduce ethical concerns that researchers and reviewers should address during study design and ethical approval. (shrink)

Changes in pupil size can reflect social interest or affect, and tend to get mimicked by observers during eye contact. Pupil mimicry has recently been observed in young infants, whereas it is unkno...