The application of machine learning in health care holds great promise for improving care. Indeed, our own team is collaborating with experts in machine learning and statistical modeling to bu...

The literature on deep brain stimulation (DBS) and adaptive DBS (aDBS) raises concerns that these technologies may affect personality, mood, and behavior. We conducted semi-structured interviews with researchers (n = 23) involved in developing next-generation DBS systems, exploring their perspectives on ethics and policy topics including whether DBS/aDBS can cause such changes. The majority of researchers reported being aware of personality, mood, or behavioral (PMB) changes in recipients of DBS/aDBS. Researchers offered varying estimates of the frequency of PMB changes. A (...) smaller majority reported changes in personality specifically. Some expressed reservations about the scientific status of the term ‘personality,’ while others used it freely. Most researchers discussed negative PMB changes, but a majority said that DBS/aDBS can also result in positive changes. Several researchers viewed positive PMB changes as part of the therapeutic goal in psychiatric applications of DBS/aDBS. Finally, several discussed potential causes of PMB changes other than the device itself. (shrink)

Traditionally, discussions of moral participation – and in particular moral agency – have focused on fully formed human actors. There has been some interest in the development of morality in humans, as well as interest in cultural differences when it comes to moral practices, commitments, and actions. However, until relatively recently, there has been little focus on the possibility that nonhuman animals have any role to play in morality, save being the objects of moral concern. Moreover, when nonhuman cases are (...) considered as evidence of moral agency or subjecthood, there has been an anthropocentric tendency to focus on those behaviors that inform our attributions of moral agency to humans. For example, some argue that the ability to evaluate the principles upon which a moral norm is grounded is required for full moral agency. Certainly, if a moral agent must understand what makes an action right or wrong, then most nonhuman animals would not qualify (and perhaps some humans too). However, if we are to understand the evolution of moral psychology and moral practice, we need to turn our attention to the foundations of full moral agency. We must first pay attention to the more broadly normative practices of other animals. Here, we begin that project by considering evidence that great apes and cetaceans participate in normative practices. (shrink)

Social norms – rules governing which behaviours are deemed appropriate or inappropriate within a given community – are typically taken to be uniquely human. Recently, this position has been challenged by a number of philosophers, cognitive scientists, and ethologists, who have suggested that social norms may also be found in certain non-human animal communities. Such claims have elicited considerable scepticism from norm cognition researchers, who doubt that any non-human animals possess the psychological capacities necessary for normative cognition. However, there is (...) little agreement among these researchers about what these psychological prerequisites are. This makes empirical study of animal social norms difficult, since it is not clear what we are looking for and thus what should count as behavioural evidence for the presence (or absence) of social norms in animals. To break this impasse, we offer an approach that moves beyond contested psychological criteria for social norms. This approach is inspired by the animal culture research program, which has made a similar shift away from heavily psychological definitions of ‘culture’ and to become organized around a cluster of more empirically tractable concepts of culture. Here, we propose an analogous set of constructs built around the core notion of a normative regularity, which we define as a socially maintained pattern of behavioural conformity within a community. We suggest methods for studying potential normative regularities in wild and captive primates. We also discuss the broader scientific and philosophical implications of this research program with respect to questions of human uniqueness, animal welfare and conservation. (shrink)

The proliferation of multistakeholder initiatives (MSIs) over the past years has sparked an intense debate on the political role of corporations in the governance of global business conduct. To gain a better understanding of corporate political behavior in multistakeholder governance, this article investigates how firms construct a political identity when participating in MSIs. Based on an in-depth case study of the Accord on Fire and Building Safety in Bangladesh—an MSI established after the collapse of the Rana Plaza garment factory complex (...) in 2013 to improve working conditions in the Bangladeshi garment industry—we introduce the construct of a political CSR (corporate social responsibility) identity (PCSRI) and explore how firms construct their PCSRIs in MSIs. Employing a qualitative, inductive theory-building method, we analyze interviews and archival data to develop a framework that elucidates how companies construct their PCSRIs within a continuum ranging from conservative to progressive. We show that constructing a PCSRI involves enacting specific, yet interrelated, political strategies that are themselves shaped by several forces over time. This article contributes to the literature by providing a political perspective on organizational identity construction that extends the emerging integrative perspective in political corporate social responsibility (PCSR) research. We suggest that MSIs should be conceptualized as inherently political governance mechanisms that are driven by multidirectional and dynamic political processes of identity construction. Our study shows that corporate political engagement in MSIs is a more nuanced and complex phenomenon than presently theorized. (shrink)

Academic integrity has become a significant point of concern in the post-secondary landscape, and many institutions are now exploring ways on how to implement academic integrity training for students. This paper delineates the development of an Academic Integrity E-Learning (AIE-L) tutorial at MacEwan University, Canada. In its first incarnation, the AIE-L tutorial was intended as an education tool for students who had been found to violate the University’s Academic Integrity Policy. However, in a discourse of the academic integrity process, the (...) University reimagined it from only emphasising the increased understanding and strengthened commitment of students found to have committed academic misconduct to a proactive focus with education for all students. The purpose of the present paper is three-fold: first, describe the development of the AIE-L tutorial as an experiential case study; second, improve the content of the AIE-L tutorial through students’ quantitative and qualitative feedback; third, calibrate the pre and post-test questions for content validity for a forthcoming large-scale measurement of the AIE-L tutorial effectiveness. (shrink)

Driven by interests in workforce planning and patient safety, a growing body of literature has begun to identify the reality and the prevalence of missed nursing care, also specified as care left undone, rationed care or unfinished care. Empirical studies and conceptual considerations have focused on structural issues such as staffing, as well as on outcome issues – missed care/unfinished care. Philosophical and ethical aspects of unfinished care are largely unexplored. Thus, while internationally studies highlight instances of covert rationing/missed care/care (...) left undone – suggesting that nurses, in certain contexts, are actively engaged in rationing care – in terms of the nursing and nursing ethics literature, there appears to be a dearth of explicit decision-making frameworks within which to consider rationing of nursing care. In reality, the assumption of policy makers and health service managers is that nurses will continue to provide full care – despite reducing staffing levels and increased patient turnover, dependency and complexity of care. Often, it would appear that rationing/missed care/nursing care left undone is a direct response to overwhelming demands on the nursing resource in specific contexts. A discussion of resource allocation and rationing in nursing therefore seems timely. The aim of this discussion paper is to consider the ethical dimension of issues of resource allocation and rationing as they relate to nursing care and the distribution of the nursing resource. (shrink)

Introduction Deep brain stimulation (DBS) is approved under a humanitarian device exemption to manage treatment-resistant obsessive-compulsive disorder (TR-OCD) in adults. It is possible that DBS may be trialed or used clinically off-label in children and adolescents with TR-OCD in the future. DBS is already used to manage treatment-resistant childhood dystonia. Evidence suggests it is a safe and effective intervention for certain types of dystonia. Important questions remain unanswered about the use of DBS in children and adolescents with TR-OCD, including whether (...) mental health clinicians would refer pediatric patients for DBS, and who would be a good candidate for DBS.Objectives To explore mental health clinicians’ views on what clinical and psychosocial factors they would consider when determining which children with OCD would be good DBS candidates.Materials and Methods In depth, semi-structured interviews were conducted with n = 25 mental health clinicians who treat pediatric patients with OCD. The interviews were transcribed, coded, and analyzed using thematic content analysis. Three questions focused on key, clinical, and psychosocial factors for assessing candidacy were analyzed to explore respondent views on candidacy factors. Our analysis details nine overarching themes expressed by clinicians, namely the patient’s previous OCD treatment, OCD severity, motivation to commit to treatment, presence of comorbid conditions, family environment, education on DBS, quality of life, accessibility to treatment, and patient age and maturity.Conclusions Clinicians generally saw considering DBS treatment in youth as a last resort and only for very specific cases. DBS referral was predominantly viewed as acceptable for children with severe TR-OCD who have undertaken intensive, appropriate treatment without success, whose OCD has significantly reduced their quality of life, and who exhibit strong motivation to continue treatment given the right environment. Appropriate safeguards, eligibility criteria, and procedures should be discussed and identified before DBS for childhood TR-OCD becomes practice. (shrink)

ZusammenfassungSystemmedizinische Ansätze zeichnen sich durch die Integration großer Datenmengen aus vielfältigen Datenquellen aus und führen systembiologische und medizinische Forschungsansätze mit informationswissenschaftlichen Methoden und prädiktiven Verfahren mathematischer Modellierung zusammen. Hieraus resultiert eine enge Kooperation von Ärzten und Naturwissenschaftlern, wobei insbesondere die Expertise nicht-ärztlicher Forscher zunehmend an Bedeutung für die Datenaufbereitung und -interpretation gewinnt. Aus ethischer Perspektive wirft diese Entwicklung Fragen nach der konkreten Gestaltung einer systemmedizinischen Zusammenarbeit sowie möglichen Rollenveränderungen und neuen Verantwortungszuschreibungen an Ärzte und nicht-ärztliche Forscher auf. Um diese Fragen (...) mit Blick auf die Erfahrungen und Perspektiven der beteiligten Akteursgruppen zu beleuchten, führten wir eine qualitative Interviewstudie mit Ärzten und nicht-ärztlichen Forschern aus unterschiedlichen systemmedizinischen Kontexten durch. Aus dem Interviewmaterial ließen sich zwei Konzeptionen von Systemmedizin rekonstruieren. Die erste ist durch eine eindeutige arbeitsteilige Rollentrennung zwischen Ärzten und Forschern charakterisiert: Der Forscher fungiert als Dienstleister, der Arzt als translationaler, interdisziplinär ausgerichteter Mediziner. Die zweite zeichnet sich durch eine weitreichende Aufhebung der Rollentrennung von Ärzten und Forschern aus: Die Berufsgruppen agieren als interdisziplinäres Team mit einer engen wechselseitigen inhaltlichen und methodischen Zusammenarbeit der Akteure. In beiden Konzeptionen werden Rollenkonflikte von Ärzten und Forschern deutlich, die insbesondere auf die Diskrepanz zwischen dem Arzt- und Forscherethos und die mit ihnen je verknüpften spezifischen Handlungsnormen und Ziele zurückzuführen sind. Ferner besteht mit Blick auf die dem Arzt und Forscher jeweils zukommende Verantwortung gegenüber Patienten vielfältiger normativer Klärungsbedarf, insbesondere hinsichtlich der Frage, welche Verantwortung den Akteursgruppen gerechtfertigter Weise zugeschrieben werden kann. Diesbezüglich erscheint eine Differenzierung von versorgungsnäheren und grundlagenforschungsorientierten Arbeitsfeldern angeraten. (shrink)

Traditionally, discussions of moral participation – and in particular moral agency – have focused on fully formed human actors. There has been some interest in the development of morality in humans, as well as interest in cultural differences when it comes to moral practices, commitments, and actions. However, until relatively recently, there has been little focus on the possibility that nonhuman animals have any role to play in morality, save being the objects of moral concern. Moreover, when nonhuman cases are (...) considered as evidence of moral agency or subjecthood, there has been an anthropocentric tendency to focus on those behaviors that inform our attributions of moral agency to humans. For example, some argue that the ability to evaluate the principles upon which a moral norm is grounded is required for full moral agency. Certainly, if a moral agent must understand what makes an action right or wrong, then most nonhuman animals would not qualify (and perhaps some humans too). However, if we are to understand the evolution of moral psychology and moral practice, we need to turn our attention to the foundations of full moral agency. We must first pay attention to the more broadly normative practices of other animals. Here, we begin that project by considering evidence that great apes and cetaceans participate in normative practices. (shrink)

Background Deep brain stimulation is approved for treating refractory obsessive-compulsive disorder in adults under the US Food and Drug Administration Humanitarian Device Exemption, and studies have shown its efficacy in reducing symptom severity and improving quality of life. While similar deep brain stimulation treatment is available for pediatric patients with dystonia, it is not yet available for pediatric patients with obsessive-compulsive disorder, although soon could be. The prospect of growing indications for pediatric deep brain stimulation raises several ethical concerns relating (...) to bodily integrity, the ability to offer informed assent, and the role pediatric patients play in the decision-making process. Objective The aim of this study is to solicit and assess the views of stakeholders (children, parents, clinicians) on pediatric assent, autonomy, and bodily integrity in the context of potential pediatric deep brain stimulation for obsessive-compulsive disorder. Methods Semi-structured interviews were conducted with pediatric obsessive-compulsive disorder patients ( n = 21), caregivers of pediatric obsessive-compulsive disorder patients aged 14–18 ( n = 19), and clinicians with experience treating refractory obsessive-compulsive disorder ( n = 25). Interviews were transcribed and coded in MAXQDA 2018 and 2020 software and processed for thematic content analysis to isolate and compare specific themes. Results A majority of respondents (74%, 48/65) across all three stakeholder groups voiced that the decision-making process should be collaborative and involve everyone (clinicians: 84% or 21/25, caregivers 71% or 15/21, and patients 63% or 12/19). We identified a split between respondents’ views on who should have the final say in the event of disagreement (38% or 25/65 favored the patient versus 35% or 23/65 favoring caregivers). A split between respondents also emerged concerning the maturity relevant for deep brain stimulation decision-making, with 45% (29/65) favoring developmental maturity (age/physiological development) and 45% (29/65) favoring decisional maturity (capacity to understand and weigh information). A majority of clinicians indicated that they would not move forward with deep brain stimulation without securing patient assent (80% or 20/25), with some stating the only exception is if patient quality of life was very poor and/or they lacked insight. Both caregivers and patients expressed a significant respect for the patient's right to bodily integrity, with 67% of caregivers (14/21) and 68% of patients (13/19) justifying patient involvement in decision-making specifically with reference to infringements of bodily integrity. Conclusion Our findings demonstrate that despite broad agreement across stakeholders that the decision-making process for pediatric deep brain stimulation for obsessive-compulsive disorder should be collaborative and somehow involve pediatric patients, there is disagreement about what this process entails and what factors determine patient involvement in the process. However, there is agreement that children have a right to bodily and brain integrity, which should only be infringed upon in rare circumstances. (shrink)

Questions on what it means to live and die well are raised and discussed in the hospice movement. A phenomenological lifeworld perspective may help professionals to be aware of meaningful and important dimensions in the lives of persons close to death. Lifeworld is not an abstract philosophical term, but rather the opposite. Lifeworld is about everyday, common life in all its aspects. In the writings of Cicely Saunders, known as the founder of the modern hospice movement, facets of lifeworld are (...) presented as important elements in caring for dying patients. Palliative care and palliative medicine today are, in many ways, replacing hospices. This represents not only a change in name, but also in the main focus. Hospice care was originally very much about providing support and comfort for, and interactions with the patients. Improved medical knowledge today means improved symptomatic palliation, but also time and resources spent in other ways than before. Observations from a Nordic hospice ward indicate that seriously ill and dying persons spend much time on their own. Different aspects of lifeworld and intersubjectivity in the dying persons’ room is presented and discussed. (shrink)

The expansion of research on deep brain stimulation (DBS) and adaptive DBS (aDBS) raises important neuroethics and policy questions related to data sharing. However, there has been little empirical research on the perspectives of experts developing these technologies. We conducted semi-structured, open-ended interviews with aDBS researchers regarding their data sharing practices and their perspectives on ethical and policy issues related to sharing. Researchers expressed support for and a commitment to sharing, with most saying that they were either sharing their data (...) or would share in the future and that doing so was important for advancing the field. However, those who are sharing reported a variety of sharing partners, suggesting heterogeneity in sharing practices and lack of the broad sharing that would reflect principles of open science. Researchers described several concerns and barriers related to sharing, including privacy and confidentiality, the usability of shared data by others, ownership and control of data (including potential commercialization), and limited resources for sharing. They also suggested potential solutions to these challenges, including additional safeguards to address privacy issues, standardization and transparency in analysis to address issues of data usability, professional norms and heightened cooperation to address issues of ownership and control, and streamlining of data transmission to address resource limitations. Researchers also offered a range of views on the sensitivity of neural activity data (NAD) and data related to mental health in the context of sharing. These findings are an important input to deliberations by researchers, policymakers, neuroethicists, and other stakeholders as they navigate ethics and policy questions related to aDBS research. (shrink)

This collection of essays provides a reassessment of the question of sexual difference, taking into account important shifts in feminist thought, post-humanist theories, and queer studies. The contributors offer new and refreshing insights into the complex question of sexual difference from a post-feminist perspective, and how it is reformulated in various related areas of study, such as ontology, epistemology, metaphysics, biology, technology, and mass-media.

Agricultural diversification in the Midwestern Corn Belt has the potential to improve socioeconomic and environmental outcomes by buffering farmers from environmental and economic shocks and improving soil, water, and air quality. However, complex barriers related to agricultural markets, individual behavior, social norms, and government policy constrain diversification in this region. This study examines farmer perspectives regarding the challenges and opportunities for both corn and soybean production and agricultural diversification strategies. We analyze data from 20 focus groups with 100 participants conducted (...) in Indiana, Illinois, and Iowa through a combined inductive and deductive approach, drawing upon interpretive grounded theory. Our results suggest that when identifying challenges and opportunities, participants center economics and market considerations, particularly income, productivity, and market access. These themes are emphasized both as benefits of the current corn-soybean system, as well as challenges for diversification. Additionally, logistical, resource and behavioral hurdles– including the comparative difficulty and time required to diversify, and constraints in accessing land, labor, and technical support– are emphasized by participants as key barriers to diversification. Agricultural policies shape these challenges, enhancing the comparative advantage and decreasing the risk of producing corn and soybeans as compared to diversified products. Meanwhile, alternative marketing arrangements, farmer networks, family relationships, and improved soil health are highlighted as important opportunities for diversification. We contextualize our findings within the theories of reasoned action and diffusion of innovation, and explore their implications for farmer engagement, markets, and agricultural policy, and the development of additional resources for business and technical support. (shrink)

Great hope has been placed on biobank research as a strategy to improve diagnostics, therapeutics and prevention. It seems to be a common opinion that these goals cannot be reached without the participation of commercial actors. However, commercial use of biobanks is considered morally problematic and the commercialisation of human biological materials is regulated internationally by policy documents, conventions and laws. For instance, the Council of Europe recommends that: “Biological materials should not, as such, give rise to financial gain”. Similarly, (...) Norwegian legislation reads: “Commercial exploitation of research participants, human biological material and personal health data in general is prohibited”. Both articles represent kinds of common moral intuitions. A problem, however, is that legislative documents are too vague and provide room for ample speculation. Through the use of focus group interviews with Norwegian biobank donors, we have tried to identify lay intuitions and morals regarding the commercial use of biobanks. Our findings indicate that the act of donation and the subsequent uses of the samples belong to two different spheres. While concerns around dignity and commodification were present in the first, injustice and unfairness were our informants’ major moral concerns in the latter. Although some opposition towards commercial actors was voiced, these intuitions show that it is possible to render commercial use of biobanks ethically acceptable based on frameworks and regulations which hinder commodification of the human body and promote communal benefit sharing. (shrink)

We examine the evolution of the concept of stability in community ecology, arguing that biologists have moved from an emphasis on biotic communities characterized by static balance, to one of dynamic balance (returning to equilibrium after perturbation), to the current concept of stability as persistence. Using Wimsatt's (1987) analysis of how false models can often lead to better ones, we argue that failed attempts to link complexity with stability have significant heuristic value for community ecologists. Nevertheless, we argue that, (A) (...) because there is no common characteristic that stability terms presuppose, community ecology might be better served by abandoning the concept of stability and by employing instead specific terms such as 'persistence', 'resistance', and 'variability'. (B) The current emphasis (of stability terms) on persistence of species provides little basis for explaining possible mechanisms that might account for persistence. (shrink)

The objective of Working Group 4 of the COST Action NET4Age-Friendly is to examine existing policies, advocacy, and funding opportunities and to build up relations with policy makers and funding organisations. Also, to synthesize and improve existing knowledge and models to develop from effective business and evaluation models, as well as to guarantee quality and education, proper dissemination and ensure the future of the Action. The Working Group further aims to enable capacity building to improve interdisciplinary participation, to promote knowledge (...) exchange and to foster a cross-European interdisciplinary research capacity, to improve cooperation and co-creation with cross-sectors stakeholders and to introduce and educate students SHAFE implementation and sustainability. To enable the achievement of the objectives of Working Group 4, the Leader of the Working Group, the Chair and Vice-Chair, in close cooperation with the Science Communication Coordinator, developed a template to map the current state of SHAFE policies, funding opportunities and networking in the COST member countries of the Action. On invitation, the Working Group lead received contributions from 37 countries, in a total of 85 Action members. The contributions provide an overview of the diversity of SHAFE policies and opportunities in Europe and beyond. These were not edited or revised and are a result of the main areas of expertise and knowledge of the contributors; thus, gaps in areas or content are possible and these shall be further explored in the following works and reports of this WG. But this preliminary mapping is of huge importance to proceed with the WG activities. In the following chapters, an introduction on the need of SHAFE policies is presented, followed by a summary of the main approaches to be pursued for the next period of work. The deliverable finishes with the opportunities of capacity building, networking and funding that will be relevant to undertake within the frame of Working Group 4 and the total COST Action. The total of country contributions is presented in the annex of this deliverable. (shrink)

We expand Chater & Loewenstein's discussion of barriers to s-frames by highlighting moral psychological mechanisms. Systemic aspects of moralized social issues can be neglected because of (a) the individualistic frame through which we perceive moral transgressions; (b) the desire to punish elicited by moral emotions; and (c) the motivation to attribute agency and moral responsibility to transgressors.

Agonizing care: care ethics, agonistic feminism and a political theory of care‘Care’ is central to nursing theory and practice, and has been described in a variety of ways. Intense conversations about care have been developing in other fields of study as well, from the social sciences to the humanities. Care ethics has grown out of intellectual exchange between feminist thought, moral theory and the critique of traditional western political philosophy. However, care ethics is not without its critics, as these accounts (...) of care have also sparked vigorous challenges. This paper traces the construct of care through nursing theory, care ethics, feminist critiques of moral and political theory and agonistic feminism to outline a set of problematics that a political theory of care should engage. It discusses how care is conventionally posited in more or less essentialist, universalizing and naturalizing terms. It introduces the ideas of feminist theorists who resist dichotomizing care and the political, and situate care in the context of power and politics. The tensions between care feminism and agonistic feminism are highlighted in order to explore the potential of theorizing both care and nursing in political terms. (shrink)

Through case studies that highlight the type of information that is seldom reported in the news, Faces of Environmental Racism exposes the type and magnitude of environmental racism, both domestic and international. The essays explore the justice of current environmental practices, asking such questions as whether cost-benefit analysis is an appropriate analytic technique and whether there are alternate routes to sustainable development in the South.

The study of animal cognition raises profound questions about the minds of animals and philosophy of mind itself. Aristotle argued that humans are the only animal to laugh, but in recent experiments rats have also been shown to laugh. In other experiments, dogs have been shown to respond appropriately to over two hundred words in human language. In this introduction to the philosophy of animal minds Kristin Andrews introduces and assesses the essential topics, problems and debates as they cut (...) across animal cognition and philosophy of mind. She addresses the following key topics: what is cognition, and what is it to have a mind? What questions should we ask to determine whether behaviour has a cognitive basis? the science of animal minds explained: ethology, behaviourist psychology, and cognitive ethology rationality in animals animal consciousness: what does research into pain and the emotions reveal? What can empirical evidence about animal behaviour tell us about philosophical theories of consciousness? does animal cognition involve belief and concepts; do animals have a ‘Language of Thought’? animal communication other minds: do animals attribute ‘mindedness’ to other creatures? moral reasoning and ethical behaviour in animals animal cognition and memory. Extensive use of empirical examples and case studies is made throughout the book. These include Cheney and Seyfarth’s ververt monkey research, Thorndike’s cat puzzle boxes, Jensen’s research into humans and chimpanzees and the ultimatum game, Pankseep and Burgdorf’s research on rat laughter, and Clayton and Emery’s research on memory in scrub-jays. Additional features such as chapter summaries, annotated further reading and a glossary make this an indispensable introduction to those teaching philosophy of mind, animal cognition. It will also be an excellent resource for those in fields such as ethology, biology and psychology. (shrink)

Background: Clinical genomic implementation studies pose challenges for informed consent. Consent forms often include complex language and concepts, which can be a barrier to diverse enrollment, and these studies often blur traditional research-clinical boundaries. There is a move toward self-directed, web-based research enrollment, but more evidence is needed about how these enrollment approaches work in practice. In this study, we developed and evaluated a literacy-focused, web-based consent approach to support enrollment of diverse participants in an ongoing clinical genomic implementation study. (...) Methods: As part of the Cancer Health Assessments Reaching Many (CHARM) study, we developed a web-based consent approach that featured plain language, multimedia, and separate descriptions of clinical care and research activities. CHARM offered clinical exome sequencing to individuals at high risk of hereditary cancer. We interviewed CHARM participants about their reactions to the consent approach. We audio recorded, transcribed, and coded interviews using a deductively and inductively derived codebook. We reviewed coded excerpts as a team to identify overarching themes. Results: We conducted 32 interviews, including 12 (38%) in Spanish. Most (69%) enrolled without assistance from study staff, usually on a mobile phone. Those who completed enrollment in one day spent an average of 12 minutes on the consent portion. Interviewees found the information simple to read but comprehensive, were neutral to positive about the multimedia support, and identified increased access to testing in the study as the key difference from clinical care. Conclusions: This study showed that interviewees found our literacy-focused, web-based consent approach acceptable; did not distinguish the consent materials from other online study processes; and valued getting access to testing in the study. Overall, conducting empirical bioethics research in an ongoing clinical trial was useful to demonstrate the acceptability of our novel consent approach but posed practical challenges. (shrink)

The ongoing debate within neuroethics concerning the degree to which neuromodulation such as deep brain stimulation (DBS) changes the personality, identity, and agency (PIA) of patients has paid relatively little attention to the perspectives of prospective patients. Even less attention has been given to pediatric populations. To understand patients’ views about identity changes due to DBS in obsessive-compulsive disorder (OCD), the authors conducted and analyzed semistructured interviews with adolescent patients with OCD and their parents/caregivers. Patients were asked about projected impacts (...) to PIA generally due to DBS. All patient respondents and half of caregivers reported that DBS would impact patient self-identity in significant ways. For example, many patients expressed how DBS could positively impact identity by allowing them to explore their identities free from OCD. Others voiced concerns that DBS-related resolution of OCD might negatively impact patient agency and authenticity. Half of patients expressed that DBS may positively facilitate social access through relieving symptoms, while half indicated that DBS could increase social stigma. These views give insights into how to approach decision-making and informed consent if DBS for OCD becomes available for adolescents. They also offer insights into adolescent experiences of disability identity and “normalcy” in the context of OCD. (shrink)

Today many homes are accessible from afar, with mobile phones functioning as remote controls for technologies within the home. In this article we propose the ‘leaky home’ as a conceptual figure to understand how automated homes that leak through connected devices and sensors that collect, transmit, receive and share data are experienced and sensed by bodies within these distributed spaces. The leak brings together postmodern metaphors of fluidity and the 21st century discourse of information leaks, while maintaining infrastructural connotations of (...) substances that shift domain in very tangible ways. By looking at a series of examples from media accounts and research conducted in Denmark, the UK, the USA and Australia, ranging from everyday family practices to digital coercive control, we explore how the care-control complex of the home is impacted by its leaky nature. (shrink)

Smoking is disproportionately common among the disadvantaged, both within many countries and globally; the burden associated with smoking is, therefore, borne to a great extent by the disadvantaged. In this paper, I argue that this should be regarded as a problem of social justice. Even though smokers do, in a sense, ‘choose’ to smoke, the extent to which these choices can legitimise the resulting inequalities is limited by the unequal circumstances in which they are made. An analysis of the empirical (...) literature reveals a variety of factors—such as targeted advertising, unequal dissemination of information about the health risks of smoking and inequalities in smoking norms—that make the disadvantaged more likely to become smokers and less likely to quit successfully. The paper then considers a range of common tobacco control policies from the perspective of social justice. The social justice perspective developed here poses a challenge for policy-makers: on the one hand, social justice concerns strengthen the case for tobacco control policies because such policies disproportionately benefit the health of the disadvantaged. At the same time, however, we must be particularly sensitive to any harms associated with such policies because such burdens, too, will fall largely on the disadvantaged. (shrink)

K. Lüscher, A. Klimczuk, Generations, intergenerational relationships, generational policy: A multilingual compendium, 17 languages, Universität Konstanz, Konstanz 2017, 428pp. TS - BibTeX M4 - Citavi.

K. Lüscher, M. Sánchez, A. Klimczuk, Generations, intergenerational relationships, generational policy: A multilingual compendium, 12 languages, Universität Konstanz, Konstanz 2016, 300pp.

K. Lüscher, A. Klimczuk, Generations, intergenerational relationships, generational policy: A multilingual compendium, 17 languages, Universität Konstanz, Konstanz 2017, 428pp. TS - BibTeX M4 - Citavi.

K. Lüscher, A. Klimczuk, Generations, intergenerational relationships, generational policy: A multilingual compendium, 17 languages, Universität Konstanz, Konstanz 2017, 428pp. TS - BibTeX M4 - Citavi.

K. Lüscher, M. Sánchez, A. Klimczuk, Generations, intergenerational relationships, generational policy: A multilingual compendium, 12 languages, Universität Konstanz, Konstanz 2016, 300pp.

K. Lüscher, A. Klimczuk, Generations, intergenerational relationships, generational policy: A multilingual compendium, 17 languages, Universität Konstanz, Konstanz 2017, 428pp. TS - BibTeX M4 - Citavi.

K. Lüscher, M. Sánchez, A. Klimczuk, Generations, intergenerational relationships, generational policy: A multilingual compendium, 12 languages, Universität Konstanz, Konstanz 2016, 300pp.

K. Lüscher, M. Sánchez, A. Klimczuk, Generations, intergenerational relationships, generational policy: A multilingual compendium, 12 languages, Universität Konstanz, Konstanz 2016, 300pp.

K. Lüscher, M. Sánchez, A. Klimczuk, Generations, intergenerational relationships, generational policy: A multilingual compendium, 12 languages, Universität Konstanz, Konstanz 2016, 300pp.

K. Lüscher, M. Sánchez, A. Klimczuk, Generations, intergenerational relationships, generational policy: A multilingual compendium, 12 languages, Universität Konstanz, Konstanz 2016, 300pp.