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)

Beta‐oxidation of fatty acids and detoxification of reactive oxygen species are generally accepted as being fundamental functions of peroxisomes. Additionally, these pathways might have been the driving force favoring the selection of this compartment during eukaryotic evolution. Here we performed phylogenetic analyses of enzymes involved in beta‐oxidation of fatty acids in Bacteria, Eukaryota, and Archaea. These imply an alpha‐proteobacterial origin for three out of four enzymes. By integrating the enzymes' history into the contrasting models on the origin of eukaryotic cells, (...) we conclude that peroxisomes most likely evolved non‐symbiotically and subsequent to the acquisition of mitochondria in an archaeal host cell. (shrink)

In debates about genetic testing of children, as well as about disclosing unsolicited findings (UFs) of pediatric exome sequencing, respect for future autonomy should be regarded as a prima facie consideration for not taking steps that would entail denying the future adult the opportunity to decide for herself about what to know about her own genome. While the argument can be overridden when other, morally more weighty considerations are at stake, whether this is the case can only be determined in (...) concrete cases. Importantly, when children grow into adolescents, respect for future autonomy will have to give way to respecting their emerging autonomy. When pediatric exome sequencing is done for complex conditions not involving developmental delay, respect for the child’s future or emerging autonomy should be a primary consideration for those charged with deciding on behalf of the child. Building on what Emanuel and Emanuel have termed the ‘deliberative model’ of shared decision making, we argue that if parents fail to give these considerations their due, professionals should actively invite them to do so. Taking a directive stance may be needed in order to make sure that the future or emerging autonomy of the child are duly considered in the decision-making process, but also to help the parents and themselves to shape their respective roles as responsible care-givers. (shrink)

Epigenetic markers could potentially be used for risk assessment in risk-stratified population-based cancer screening programmes. Whereas current screening programmes generally aim to detect existing cancer, epigenetic markers could be used to provide risk estimates for not-yet-existing cancers. Epigenetic risk-predictive tests may thus allow for new opportunities for risk assessment for developing cancer in the future. Since epigenetic changes are presumed to be modifiable, preventive measures, such as lifestyle modification, could be used to reduce the risk of cancer. Moreover, epigenetic markers (...) might be used to monitor the response to risk-reducing interventions. In this article, we address ethical concerns related to personal responsibility raised by epigenetic risk-predictive tests in cancer population screening. Will individuals increasingly be held responsible for their health, that is, will they be held accountable for bad health outcomes? Will they be blamed or subject to moral sanctions? We will illustrate these ethical concerns by means of a Europe-wide research programme that develops an epigenetic risk-predictive test for female cancers. Subsequently, we investigate when we can hold someone responsible for her actions. We argue that the standard conception of personal responsibility does not provide an appropriate framework to address these concerns. A different, prospective account of responsibility meets part of our concerns, that is, concerns about inequality of opportunities, but does not meet all our concerns about personal responsibility. We argue that even if someone is responsible on grounds of a negative and/or prospective account of responsibility, there may be moral and practical reasons to abstain from moral sanctions. (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)

Our knowledge of the human brain and the influence of pharmacological substances on human mental functioning is expanding. This creates new possibilities to enhance personality and character traits. Psychopharmacological enhancers, as well as other enhancement technologies, raise moral questions concerning the boundary between clinical therapy and enhancement, risks and safety, coercion and justice. Other moral questions include the meaning and value of identity and authenticity, the role of happiness for a good life, or the perceived threats to humanity. Identity and (...) authenticity are central in the debate on psychopharmacological enhancers. In this paper, I first describe the concerns at issue here as extensively propounded by Carl Elliott. Next, I address David DeGrazia’s theory, which holds that there are no fundamental identity-related and authenticity-related arguments against enhancement technologies. I argue, however, that DeGrazia’s line of reasoning does not succeed in settling these concerns. His conception of identity does not seem able to account for the importance we attach to personal identity in␣cases where personal identity is changed through enhancement technology. Moreover, his conception of authenticity does not explain the reason why we find inauthentic values objectionable. A broader approach to authenticity can make sense of concerns about changes in personal identity by means of enhancement technologies. (shrink)

During the Zimbabwean crisis, millions crossed through the apartheid-era border fence, searching for ways to make ends meet. Maxim Bolt explores the lives of Zimbabwean migrant labourers, of settled black farm workers and their dependants, and of white farmers and managers, as they intersect on the border between Zimbabwe and South Africa. Focusing on one farm, this book investigates the role of a hub of wage labour in a place of crisis. A close ethnographic study, it addresses the complex, shifting (...) labour and life conditions in northern South Africa's agricultural borderlands. Underlying these challenges are the Zimbabwean political and economic crisis of the 2000s and the intensified pressures on commercial agriculture in South Africa following market liberalization and post-apartheid land reform. But, amidst uncertainty, farmers and farm workers strive for stability. The farms on South Africa's margins are centers of gravity, islands of residential labour in a sea of informal arrangements. (shrink)

THE SUBJETCS OF THE ABSOLUTE WRONG AND ITS OPPSPRING The notion of the proletariat as the historical subject has disappeared in radical left-wing theory since the late 1960's. By comparing Guy Debord and the young Marx’s notion of the proletariat with the later notions of transgressive subjectivities, proposed by Alain Badiou, Jacques Rancière and Antonio Negri respectively, the article analyses a split between ‘interior’ and ‘exterior’ in contemporary Marxist and post-Marxist theory.

This paper critiques enlightenment notions of representation and rehearses an alternative model of mapping that is grounded in performance. Working from her own practice as a landscape painter, Bolt argues that the particular experience of the “glare” of Australian light fractures the nexus between light, form, knowledge, and subjectivity. This rupture prompts a move from shedding light ON the matter to shedding light FOR the matter and suggests an emergent rather than a representational practice.

In 2012 the author completed a series of drawings that, while figurative in form, were structurally based on and derived their inspiration from Robert Motherwell’s abstract series, Elegies to the Spanish Republic. This wholesale 'borrowing', 'quotation' and 'citation' raises the questions addressed in this article. What does it mean to engage in acts of appropriation now? And, more importantly, can such acts of appropriation draw on the spirit of the 'original' work to make a difference?

Informed decision-making (IDM) is considered an important ethical and legal requirement for population-based screening. Governments offering such screening have a duty to enable invitees to make informed decisions regarding participation. Various views exist on how to define and measure IDM in different screening programmes. In this paper we first address the question which components should be part of IDM in the context of cancer screening. Departing from two diverging interpretations of the value of autonomy—as a right and as an ideal—we (...) describe how this value is operationalized in the practice of informed consent in medicine and translate this to IDM in population-based cancer screening. Next, we specify components of IDM, which is voluntariness and the requirements of disclosure and understanding. We argue that whereas disclosure should contain all information considered relevant in order to enable authentic IDM, understanding of basic information is sufficient for a valid IDM. In the second part of the paper we apply the capability approach in order to argue for the responsibility of the government to warrant equal and real opportunities for invitees for IDM. We argue that additional conditions beyond mere provision of information are needed in order to do so. (shrink)

Neurofeedback (NF) aims to alter neural activity by enhancing self-regulation skills. Over the past decade NF has received considerable attention as a potential intervention option for many somatic and mental conditions and ADHD in particular. However, placebo-controlled trials have demonstrated insufficient superiority of NF compared to treatment as usual and sham conditions. It has been argued that the reason for limited NF effects may be attributable to participants' challenges to self-regulate the targeted neural activity. Still, there is support of NF (...) efficacy when only considering so-called “standard protocols,” such as Slow Cortical Potential NF training (SCP-NF). This PROSPERO registered systematic review following PRISMA criteria searched literature databases for studies applying SCP-NF protocols. Our review focus concerned the operationalization of self-regulatory success, and protocol-details that could influence the evaluation of self-regulation. Such details included; electrode placement, number of trials, length per trial, proportions of training modalities, handling of artifacts and skill-transfer into daily-life. We identified a total of 63 eligible reports published in the year 2000 or later. SCP-NF protocol-details varied considerably on most variables, except for electrode placement. However, due to the increased availability of commercial systems, there was a trend to more uniform protocol-details. Although, token-systems are popular in SCP-NF for ADHD, only half reported a performance-based component. Also, transfer exercises have become a staple part of SCP-NF. Furthermore, multiple operationalizations of regulatory success were identified, limiting comparability between studies, and perhaps usefulness of so-called transfer-exercises, which purpose is to facilitate the transfer of the self-regulatory skills into every-day life. While studies utilizing SCP as Brain-Computer-Interface mainly focused on the acquisition of successful self-regulation, clinically oriented studies often neglected this. Congruently, rates of successful regulators in clinical studies were mostly low (<50%). The relation between SCP self-regulation and behavior, and how symptoms in different disorders are affected, is complex and not fully understood. Future studies need to report self-regulation based on standardized measures, in order to facilitate both comparability and understanding of the effects on symptoms. When applied as treatment, future SCP-NF studies also need to put greater emphasis on the acquisition of self-regulation (before evaluating symptom outcomes).Systematic review registrationhttps://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42021260087, Identifier: CRD42021260087. (shrink)

Refuting the assumption that art is a representational practice, Bolt's striking argument engages with the work of Heidegger, Deleuze and Guattari, C.S.Peirce and Judith Butler to argue for a performative relationship between art and artist. Drawing on themes as diverse as the work of Cezanne and of Francis Bacon, the transubstantiation of the Catholic sacrament and Wilde's novel The Picture of Dorian Gray , she challenges the metaphor of light as enlightenment, reconceiving this revealing light as the blinding glare of (...) the Australian sun, and suggests that too much light may in fact reveal nothing. Finally she asks: how does an embodied practice fare within the culture of conceptual art? (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)

Carnal Knowledge is an outcome of the renewed energy and interest in moving beyond the discursive construction of reality to understand the relationship between what is conceived of as reality and materiality, described as the "material turn." It draws together established and emerging writers, whose research spans dance, music, film, fashion, design, photography, literature, painting and stereo-immersive VR, to demonstrate how art allows us to map the complex relations between nature and culture, between the body, language and knowledge. These writings (...) are unique in the field because they represent the authors' commitment to a new materialism through the creative arts. The questions they address include: Does the material turn in the creative arts take a different turn from continental epistemology, philosophy and the humanities? How does the agency of matter, the material nature of artistic practice and the notion of "truth to materials" affect what we understand as the "new materialism?" In engaging with these questions the book offers perspectives on the emergence of this exciting fresh field of new materialism. (shrink)

Neurodevelopmental disorders (NDDs), such as autism and ADHD, are behaviorally defined adaptive functioning difficulties arising from variations, alterations and atypical maturation of the brain. While it is widely agreed that NDDs are complex conditions with their presentation and functional impact underpinned by diverse genetic and environmental factors, contemporary and polarizing debate has focused on the appropriateness of the biomedical as opposed to the neurodiverse paradigm in framing conceptions of these conditions. Despite being largely overlooked by both research and practice, the (...) International Classification of Functioning Disability and Health (ICF) endorsed by the World Health Organization in 2001 views functioning dynamically, offering a framework for investigating, assessing and treating NDDs holistically. Exemplified by autism and ADHD, we argue that the ICF provides not only a multitude of opportunities in accounting for the environmental determinants in researching and clinically managing NDDs, but opportunities for harmonizing the seemingly irreconcilable biomedical and neurodiverse paradigms. Also see the video abstract here:https://youtu.be/YwuWPDUOs5k. (shrink)

Barbara Bolt takes the most relevant of Heidegger's texts, including his most famous work, 'Being and Time', and sets out ways of thinking about art in a post-medium, digital, technocratic and post-human age.

The article brings together three short texts by Giorgio Agamben: “What is a people?” from Means without Ends from 1996, the third chapter from The Time that Remains from 2000 and the oral presentation “What is a movement?” from 2005. It analyzes Agamben’s idea of the people as internally divided. Through a juxtaposition with Marx’ notion of the proletariat, the article discusses Agamben’s attempt to develop a inoperative, but nonetheless revolutionary counter-paradigm to the biopolitical power paradigm of the West.

In Australia, the university ethics approval process is guided by the National Statement on Ethical Conduct in Human Research. The National Statement does not provide a hurdle to be overcome or avoided, nor is it a Godzilla-like monster that must be slain for truth to survive. Rather the National Statement provides an affirmation of an abiding respect for all life and a mechanism for beginning the intelligent questioning, theorization and contextualization for a work of art. Focusing specifically on the emergent (...) discipline of artistic research, this article addresses the question of how the supervisory process may take on the ‘spirit’ of the National Statement to engender genuine ethical debate, rather than merely focus on the instrumental obstacles that seem to get in the way of the research. It specifically addresses the emergent field of artistic research and the concomitant resistance to ethical regulation of artistic research, in which bureaucratic instrumentalism and compliance or censorship are considered to potentially emasculate the vitality of an art work and the ability of art to serve as a truthsayer or agent provocateur. In this, the attitude of the supervisor toward research ethics in artistic research is considered a key factor in determining their students attitudes towards the ethics process. This article will present several initiatives undertaken with the intent of more fully engaging supervisors and students with research ethics. (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)

This article is a discussion of Grant Kester’s notion of socially-engaged art criticism via a retrospective mapping of the four most important 1990s artistic practices: relational art, institutional critique, tactical media and socially-engaged art. While both relational, or participatory, art and institutional critique seem to have run out of steam, and have fused more or less seamlessly with the institution of art, socially-engaged art still seems to hold critical potential by making use of the relative autonomy of art beyond the (...) narrow confines of the art institution. The journal Field, founded and edited by Kester, is an attempt to develop a new art criticism that is able to account for this kind of practice. The turn to ethnography in order to analyse often open-ended community-based projects is relevant – and the. (shrink)

At first glance the three eukaryotic protein translocation machineries – the ER‐associated degradation (ERAD) transport apparatus of the endoplasmic reticulum, the peroxisomal importomer and SELMA, the pre‐protein translocator of complex plastids – appear quite different. However, mechanistic comparisons and phylogenetic analyses presented here suggest that all three translocation machineries share a common ancestral origin, which highlights the recycling of pre‐existing components as an effective evolutionary driving force.Editor's suggested further reading in BioEssays ERAD ubiquitin ligases Abstract.

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)

This paper introduces the design principle of legibility as means to examine the epistemic and ethical conditions of sensing technologies. Emerging sensing technologies create new possibilities regarding what to measure, as well as how to analyze, interpret, and communicate said measurements. In doing so, they create ethical challenges for designers to navigate, specifically how the interpretation and communication of complex data affect moral values such as autonomy. Contemporary sensing technologies require layers of mediation and exposition to render what they sense (...) as intelligible and constructive to the end user, which is a value-laden design act. Legibility is positioned as both an evaluative lens and a design criterion, making it complimentary to existing frameworks such as value sensitive design. To concretize the notion of legibility, and understand how it could be utilized in both evaluative and anticipatory contexts, the case study of a vest embedded with sensors and an accompanying app for patients with chronic obstructive pulmonary disease is analyzed. (shrink)

Is it possible to find an ethical and generative way to speak about the ‘work’ of Indigenous art? Regardless of what prohibitions exist to protect sacred knowledge from the gaze of Western eyes, Indigenous work is circulating; it is being read, misread, interpreted, misinterpreted and otherwise known. How can a non-Indigenous person ‘speak’ about Indigenous art without reducing it to the diagram, collapsing it into Western modes of knowing, or intruding into the domain of restricted cultural information? Given the lessons (...) of the Indigenous cultural practices, I propose that the work of art is performative and not merely representational. Through attention to the operation of rhythm in Kathleen Petyarre’s paintings, I propose to reconfigure contemporary understandings of performativity. In this formulation I will argue that in the dynamic productivity of the performative act, the world intrudes into practice, and in a double movement, practice casts its effects back towards the world. In this way I suggest that just as life gets into images, so imaging also produces reality. This mutual reflection is the work of art. (shrink)

The next World Congress of Bioethics will be held in Doha, Qatar. Although this location provides opportunities to interact with a more culturally diverse audience, to advance dialogue between cultures and religions, offer opportunities for mutual learning, there are also huge moral concerns. Qatar is known for violations of human rights ‐ including the treatment of migrant workers and the rights of women ‐ corruption, criminalization of LGBTQI+ persons, and climate impact. Since these concerns are also key (bio)ethical concern we (...) call for a broad debate within the bioethics community whether organizing and attending the World Congress in Qatar is ethically problematic and how ethical concerns should be dealt with. (shrink)

This book presents a timely reconfiguration of the relations between art, philosophy, ethics, and aesthetics. Through connection with a range of contemporary social and philosophical issues and movements, this collection of essays highlights the imperative of sensorial aesthetics. The book focuses on the radical philosophical approach to aesthetics enabled by the works of Jean-François Lyotard and Gilles Deleuze. From these philosophers an older meaning of aesthetic has been recalled. Before it indicated primarily the theory of art and beauty, “aesthetic” referred (...) to the sensibility, the capacity to receive sensations. In summoning this “sensorial” meaning of aesthetics in their respective works, Lyotard, Deleuze, and other recent thinkers turn the philosophical theory of aesthetics away from the dominance of cognitivist and reception theories, and towards a thinking of aesthetics through considerations of the movements of matter, affect, and sensation. (shrink)

In a historical situation characterised by crisis, wars and widespread protests the question of the relationship between past Left-revolutionary endeavours and present political challenges is of utmost importance for the possibility of mounting an anti-systemic challenge to capitalism. T. J. Clark’s essay ‘For a Left with No Future’ argues that the future-oriented stance of the 19th and 20th Century Left turned the Left into a disastrous dobbel- gänger of capitalist modernity causing havoc and death instead of being a genuine opposition (...) to capitalism. The great refusals have to be replaced with a ‘modest’ and more ‘realistic’ approach, Clark argues, enabling the Left to understand the human propensity to violence and therefore engaging in a kind of anti-war activism. This article rejects Clark’s analysis and tries to save the revolutionary perspective Clark is trying to get rid of arguing that it is indeed the Left that we have to bury. Juxtaposing Clark’s argument with a reading of Michèle Bernstein’s ‘Victories of the Proletariat’ made as part of the 1963 Situationist exhibition ‘Destruction of RSG-6’ the article attempts to contribute to the re-formulation of a contemporary revolutionary position on the basis of the breakdown of the programmatic Left. (shrink)

For relativistic particles with spin 1/2, which are described by the Dirac equation, a semiclassical trace formula is introduced that incorporates expectation values of observables in eigenstates of the Dirac-Hamiltonian. Furthermore, the semiclassical limit of an average of expectation values is expressed in terms of a classical average of the corresponding classical observable.

Background Massively parallel sequencing techniques, such as whole exome sequencing (WES) and whole genome sequencing (WGS), may reveal unsolicited findings (UFs) unrelated to the diagnostic aim. Such techniques are frequently used for diagnostic purposes in pediatric cases of developmental delay (DD). Yet policy guidelines for informed consent and return of UFs are not well equipped to address specific moral challenges that may arise in these children’s situations. Discussion In previous empirical studies conducted by our research group, we found that it (...) is sometimes uncertain how children with a DD will develop and whether they could come to possess capacities for autonomous decision-making in the future. Parents sometimes felt this brought them into a Catch-22 like situation when confronted with choices about UFs before undergoing WES in trio-analysis (both the parents’ and child’s DNA are sequenced). An important reason for choosing to consent to WES was to gain more insight into how their child might develop. However, to make responsible choices about receiving or declining knowledge of UFs, some idea of their child’s future development of autonomous capacities is needed. This undesirable Catch-22 situation was created by the specific policy configuration in which parents were required to make choices about UFs before being sequencing (trio-analysis). We argue that this finding is relevant for reconfiguring current policies for return of UFs for WES/WGS and propose guidelines that encompass two features. First, the informed consent process ought to be staged. Second, differing guidelines are required for withholding/disclosing a UF in cases of DD appropriate to the level of confidence there is about the child’s future developmental of autonomous capacities. Conclusion When combined with a dynamic consent procedure, these two features of our guidelines could help overcome significant moral challenges that present themselves in the situations of children undergoing genomic sequencing for clarifying a DD. (shrink)

This paper reports on the experiences of creative practice graduate researchers and academic staff as they seek to comply with the requirements of the Australian National Statement on the Ethical Conduct of Research Involving Humans. The research was conducted over a two-year period as part of a wider project ‘iDARE – Developing New Approaches to Ethics and Research Integrity Training through Challenges Presented by Creative Practice Research’. The research identified the appreciation of ethics that the participants acquired through their experience (...) of institutional research ethics procedures at their university. It also revealed a disjunction between the concepts of ethics acquired through meeting institutional research ethics requirements, the notion of ethics that many researchers adopt in their own professional creative practice and the contents of professional codes of conduct. A key finding of the research was that to prepare creative practice graduates for ethical decision-making in their professional lives, research ethics training in universities should be broadened to encompass a variety of contexts and enable researchers to develop skills in ethical know-how. (shrink)

The Meeting of Aesthetics and Ethics in the Academy provides a deep understanding of the nuances of ethics in the creative environment and contributes to the critical exploration of the nature of research ethics in higher education. Written by world-renown academics with a wealth of experience in this field, this volume explores ethical challenges and responses across a range of creative practices and disciplines including design, documentary film making, journalism, socially engaged arts and the visual arts. It addresses the complex (...) negotiations that creative practice researchers in higher education undertake to ensure that the ethical compliance required does not undermine the research integrity and artistic aspirations. By presenting carefully considered challenges to accepted models of research, this book illustrates critical analysis through a variety of case studies and anecdotal examples that provide an insight into improved ethics practices and policies in higher education. This book is perfect for academics, ethics administrators, higher degree research candidates and supervisors looking to engage further in creative practice research and wanting to explore and understand its ethical oversight. (shrink)

Despite the reported limited success of conventional treatments and growing evidence of the effectiveness of adult bariatric surgery, weight loss operations for (morbidly) obese children and adolescents are still considered to be controversial by health care professionals and lay people alike. This paper describes an explorative, qualitative study involving obesity specialists, morbidly obese adolescents, and parents and identifies attitudes and normative beliefs regarding pediatric bariatric surgery. Views on the etiology of obesity—whether it should be considered primarily a medical condition or (...) more a psychosocial problem—seem to affect the specialists’ normative opinions concerning the acceptability of bariatric procedures as a treatment option, the parents’ feelings regarding both being able to influence their child’s health and their child being able to control their own condition, and the adolescents’ sense of competence and motivation for treatment. Moreover, parents and adolescents who saw obesity as something that they could influence themselves were more in favor of non-surgical treatment and vice versa. Conflicting attitudes and normative views—e.g., with regard to concepts of disease, personal influence on health, motivation, and the possibility of a careful informed consent procedure—play an important role in the acceptability of bariatric surgery for childhood obesity. (shrink)

The article analyses the relatively meager response of artists to the ‘war on terror’ compared to the response of American artists to the war in Vietnam, where artists organized both exhibitions and protests against the war in South East Asia in the late 1960s. This of course has to do with the transformations going in contemporary art and the broader political context characterized by the hegemony of neo-liberalism. The article juxtaposes an installation by the Retort collective with an installation by (...) Alfredo Jaar, analyzing two different ways of confronting the image war of the capitalist state machine with either a heave-handed use of art or a negative representation. (shrink)

In this article ethical issues are discussed which play a role in pharmacogenetics. Developments in pharmacogenetics have a large impact on many different practices such as clinical trials, the practice of medicine and society at large. In clinical trials, questions rise regarding the exclusion of genetic subgroups that may be non- or poor-responders to the experimental drug. Also, the question is asked how pharmaceutical companies should deal with their growing knowledge about the relations between genetic variation and adverse effects. Moreover, (...) pharmacogenetics may provide disease-specific predictive information which may have a significant impact on the relations between physicians, patients and their relatives in the practice of medicine. Here, issues also arise regarding responsibility of patients and physicians for health and disease. In the society at large, the high costs of new pharmacogenetic possibilities lead to questions concerning solidarity and fair distribution on a national as well as an international level. It is concluded that in the near future, ethical research should be focused on the themes responsibility, inclusion and exclusion and global justice. (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)

Research from behavioural sciences shows that people reach decisions in a much less rational and well-considered way than was often assumed. The doctrine of informed consent, which is an important ethical principle and legal requirement in medical practice, is being challenged by these insights into decision-making and real-world choice behaviour. This article discusses the implications of recent insights of research on decision-making behaviour for the informed consent doctrine. It concludes that there is a significant tension between the often non-rational choice (...) behaviour and the traditional theory of informed consent. Responsible ways of dealing with or solving these problems are considered. To this end, patient decisions aids are discussed as suitable interventions to support autonomous decision-making. However, current PDAs demand certain improvements in order to protect and promote autonomous decision-making. Based on a conception of autonomy, we will argue which type of improvements are needed. (shrink)

Atypical brain function in attention-deficit/hyperactivity disorder (ADHD) has been identified using both task-activation and functional connectivity fMRI approaches. Recent work highlights the potential for another measure derived from functional neuroimaging data, brain signal variability, to reveal insights into clinical conditions. Higher brain signal variability has previously been linked with optimal behavioral performance. At present, little is known regarding the relationship between resting-state brain signal variability and ADHD symptom severity. The current study examined the relationship between a measure of moment-to-moment brain (...) signal variability called mean-square successive difference (MSSD) and ADHD symptomatology in a group of children (7–12 years old) with ( n = 40) and without ( n = 30) a formal diagnosis of ADHD. A categorical analysis comparing subjects with and without a clinical diagnosis of ADHD showed no differences in MSSD between groups. A dimensional analysis revealed a positive relationship between MSSD and overall ADHD symptom severity and inattention across children with and without an ADHD diagnosis. Specifically, this positive relationship was found in medial prefrontal areas comprising the default mode network. These results demonstrate a link between intrinsic brain signal variability and ADHD symptom severity that cuts across diagnostic categories, and point to a locus of dysfunction consistent with previous neuroimaging literature. (shrink)

_Co-published with Kappa Delta Pi_ _The ABCs of Classroom Management_ equips teachers with a repertoire of expert strategies to develop classroom expectations and manage student behaviors. The second edition of this practical, alphabetical guide includes expansions on time-honored topics such as relationship building, communication, discipline, and behavior management, with the addition of new topics such as cyberbullying, violence prevention, social media, and substitute teachers. The newest quick reference to managing a classroom offers tried-and-true tips and specific examples of practical applications (...) in the classroom. Educators who purchase the second edition also can access ABC’s Online to find downloadable forms, samples and checklists, and links to related resources. This edition of _The ABC’s of Classroom Management_ gives future and new educators practical and informative tips and tools for managing their classrooms to apply right away so they can focus on student learning. Underlying the nuts-and-bolts entries of the book are the themes of teacher professionalism, leadership, and empowerment. Armed with a proactive attitude and the right tools that are applied purposefully and consistently, novice teachers develop their craft to become masterful educators. (shrink)