The effort to “appreciate” phenomenology and feminism in the study of quiltmaking discourse self-reflexively joins a philosophy of experience with a politics of women's experiences. At the same time it reveals method to be an embodied practice which involves knowledge as power, and it discovers power relations between researchers and the researched within particular contexts and relationships. For phenomenology, these reflections may encourage closer attention to the en-gendering and situating of the subject within social and cultural conditions. Also they may (...) challenge us to ask: who benefits from phenomenological understanding? For feminism, this effort may encourage greater self-critique in regard to the phenomena of women's experiences. Simultaneously, these reflections may temper an uncritical embracing of phenomenological methods. Perhaps these reflections can best be seen as a working out of a pattern that joins phenomenology, feminism, and their compatible and contradictory relations like the three layers of a quilt. In this embodied and ongoing labor of piecing and quilting I have attempted to expose the seams and the gaps rather than smooth over their differences. Research, like quiltmaking, functions as both a noun and a verb, a product and a practice, engaged bodily and mindfully as a project in the world. (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)

While the value of early detection of dementia is largely agreed upon, population-based screening as a means of early detection is controversial. This controversial status means that such screening is not recommended in most national dementia plans. Some current practices, however, resemble screening but are labelled “case-finding” or “detection of cognitive impairment”. Labelled as such, they may avoid the ethical scrutiny that population-based screening may be subject to. This article examines conceptualizations of screening and case-finding. It shows how the definitions (...) and delimitations of the concepts (the _what_ of screening) are drawn into the ethical, political, and practical dimensions that screening assessment criteria or principles are intended to clarify and control (the _how_ of screening, how it is and how it should be performed). As a result, different conceptualizations of screening provide the opportunity to rethink what ethical assessments should take place: the conceptualizations have different ethico-political implications. The article argues that population-based systematic screening, population-based opportunistic screening, and case-finding should be clearly distinguished. (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)

The ethical principle of ‘respect for persons’ in clinical research has traditionally focused on protecting individuals’ autonomy rights, but respect for participants also includes broader, although less well understood, ethical obligations to regard individuals’ rights, needs, interests and feelings. However, there is little empirical evidence about how to effectively convey respect to potential and current participants. To fill this gap, we conducted exploratory, qualitative interviews with participants in a clinical genomics implementation study. We interviewed 40 participants in English or Spanish (...) about their experiences with respect in the study and perceptions of how researchers in a hypothetical observational study could convey respect or a lack thereof. Most interviewees were female, identified as Hispanic/Latino or non-Hispanic white, reported annual household income under US$60 000 and did not have a Bachelor’s degree ; 30% had limited health literacy. We identified four key domains for demonstrating respect: personal study team interactions, with an emphasis on empathy, appreciation and non-judgment; study communication processes, including following up and sharing results with participants; inclusion, particularly ensuring materials are understandable and procedures are accessible; and consent and authorisation, including providing a neutral informed consent and keeping promises regarding privacy protections. While the experience of respect is inherently subjective, these findings highlight four key domains that may meaningfully demonstrate respect to potential and current research participants. Further empirical and normative work is needed to substantiate these domains and evaluate how best to incorporate them into the practice of research. (shrink)

Lee emphasizes the need to better understand the moral relationship between researchers and participants connoted by precision medicine, with the framework of “the gift” offering bioethics a...

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)

Background: International developments suggest that providing clinical ethics services to help clinicians negotiate ethical issues that arise in clinical practice is beneficial and reflects best practice in promoting high ethical standards and patient-centered care. The aim of this study was to explore the needs and experiences of clinical staff members to inform the development of future clinical ethics support. Methods: Health professionals at a large regional health service completed an online survey containing questions about the frequency of ethical and legal (...) issues encountered in clinical practice, the type of situations that gave rise to the ethical and/or legal uncertainty or concern, how clinicians currently address these issues, and what support would be welcome. Results: The survey was completed by 369 staff members, including 61% with more than 10 years in the profession and 51% in nursing/midwifery. Two-thirds (66%) indicated they often considered ethical implications of their clinical decisions, and half (49%) often considered the legal implications. More than half (58%) were often/occasionally concerned about the ethically right thing to do. Patient requests for borderline treatment (47%), staff disagreements about patient care (48%), and patients declining recommended treatment (54%) were the most frequent reasons given for ethical or legal uncertainty. Sixty-nine percent of respondents indicated that the way their department addressed ethical issues could be improved and 85% agreed that there is a need for more discussion on ethical issues. The majority (82%) of respondents had encountered ethically challenging clinical situations where additional support would have helped. Common approaches to issues were discussion with colleagues/supervisor (91.1%), discussion at handover/group forums (50.8%), and consultation with guidelines/protocols (60.9%). Conclusions: A majority of clinical staff members surveyed have encountered ethically/legally challenging cases daily for which they have often sought additional advice. This study indicates that many clinical staff members would welcome some form of additional clinical ethics support including advice and education. (shrink)

BackgroundDeep brain stimulation is approved for treating refractory obsessive-compulsive disorder in adults under the US Food and Drug Administration Humanitarian Device Exemption, and studies hav...

"Is it meaningful to call oneself a democrat? And if so, how do you interpret the word?" -/- In responding to this question, eight iconoclastic thinkers prove the rich potential of democracy, along with its critical weaknesses, and reconceive the practice to accommodate new political and cultural realities. Giorgio Agamben traces the tense history of constitutions and their coexistence with various governments. Alain Badiou contrasts current democratic practice with democratic communism. Daniel Bensaid ponders the institutionalization of democracy, while Wendy Brown (...) discusses the democratization of society under neoliberalism. Jean-Luc Nancy measures the difference between democracy as a form of rule and as a human end, and Jacques Rancière highlights its egalitarian nature. Kristin Ross identifies hierarchical relationships within democratic practice, and Slavoj Zizek complicates the distinction between those who desire to own the state and those who wish to do without it. -/- Concentrating on the classical roots of democracy and its changing meaning over time and within different contexts, these essays uniquely defend what is left of the left-wing tradition after the fall of Soviet communism. They confront disincentives to active democratic participation that have caused voter turnout to decline in western countries, and they address electoral indifference by invoking and reviving the tradition of citizen involvement. Passionately written and theoretically rich, this collection speaks to all facets of modern political and democratic debate. (shrink)

It’s common to think that animals think. The cat thinks it is time to be fed, the monkey thinks the dominant is a threat. In order to make sense of what the other animals around us do, we ascribe mental states to them. The cat meows at the door because she wants to be let in. The monkey the monkey fails the test because he doesn’t remember the answer. -/- We explain animal actions in terms of their mental states, just (...) as we do with humans. One of us has argued that our science of animal minds requires that animal behavior be explained in such terms, and this doesn’t lead to a problematic use of folk psychology or anthropomorphism (Andrews 2016, 2020). By “anthropomorphism” we mean the attribution of human psychological, social, or normative properties to non-human animals “usually with the implication it is done without sound justification” (Shettleworth 2010, 477). And by “folk psychology” we mean the commonsense practice of seeing action as caused or accompanied by mental states like belief and desire, emotions, and seeing people in terms of their moods or personality traits, as well as categorizing complex behaviors as examples of grieving, communicating, or teaching (Andrews 2012). Psychologists routinely describe human behaviors in folk psychological terms, so it’s not that the categories are unscientific. The issue with using folk psychology to describe animal behavior is whether observable similarities between human and nonhuman behavior warrants thinking they involve the same psychological kind. The use of folk psychology when talking about animals need not be problematically anthropomorphic, though we need some evidentiary basis for filing animal behavior under some folk psychological category. -/- Despite it being commonplace for humans to attribute thoughts to animals, and there being arguments in favor of doing so in science, the nature of these mental states so many are happy to see in other animals remains unclear. To help bring some focus into the discussion, we will examine the attitude of belief. In this chapter we will examine the various possible statuses of animal beliefs, and the implications of those various views for our folk practice as well as our scientific investigations. (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)

Much experimental evidence shows that minimally counterintuitive concepts, which violate one intuitive ontological expectation of domain-specific natural kinds, are remembered as well as or better than intuitive concepts with no violations of ontological expectations, and much better than maximally counterintuitive concepts with more than one violation of ontological violations. It is also well established that concepts rated as high in imagery, are recalled better than concepts that are low in imagery. We conducted three studies to test whether imagery levels affected (...) recall rates of intuitive, minimally counterintuitive, and maximally counterintuitive concepts. In study 1, we obtained imagery level ratings for 48 three-word items. In study 2, we used the ratings obtained in study 1 in a 2 × 3 recall task in which imagery was manipulated along with counterintutiveness. High imagery items were recalled significantly better than low imagery items for intuitive and maximally counterintuitive items but not for minimally counterintuitive items. Study 3, replicated the findings from study 2 in a 2 × 2 study using a larger number of intuitive and minimally counterintuitive items. In both studies, High imagery items were recalled significantly better than low imagery items for intuitive but not for minimally counterintuitive items. Thus, minimally counterintuitive concepts appear insulated from imagery effects on recall. (shrink)

Every day, television news operations have available dozens of video news releases (VNRs), public relations handout videos designed to mimic news formats. Electronic tracking indicates some of these VNRs are used. Critics typically assail VNRs on ethical grounds, that VNRs deceive audience members into thinking they are watching news gathered by reporters, rather than a promotional pitch. Using a snowball technique, the researchers presented survey respondents with authentic-looking local television news stories; 157 respondents evaluated three stories (out of nine). Some (...) stories used station-generated footage, some network, and some VNRs. Respondents were asked their best estimation of the source. The data indicated a real likelihood VNR deception is occurring. Two of the three VNRs deceived at least half the respondents. Respondents were incorrect an average of 46% of the time when attempting to identifying VNRs, compared to 29% incorrectly identifying network video and 20% incorrectly identifying locally shot video. (shrink)

The COVID-19 pandemic has been devastating for people living with dementia (PLWD) and their caregivers. While prior research has documented these effects, it has not delved into their specific causes or how they are modified by contextual variation in caregiving circumstances.

We explore physiological linkage among 34 same-sex male couples. Interbeat interval, an indicator of cardiovascular arousal, was collected across four conversational contexts in the lab: a baseline period that did not involve conversation, a conversation about body image, a conversation about health goals, and a recovery period that allowed for unstructured conversation. We used a newly developed R statistical package that simplifies the use of dynamic models for investigating interpersonal emotional processes. We identified two different PL patterns: a simple one (...) that was characterized by stable synchronization and low frequency of oscillation; and a complex one that was characterized by drifting synchronization, high frequency of oscillation, and eventual damping. Guided by social baseline theory and the reactive flexibility perspective, we explored the interactions between couple relationship functioning and conversational context as predictors of the PL patterns. The results suggest that partners in well-functioning relationships and emotionally challenging situations may be especially likely to show complex PL patterns that may reflect coregulatory processes. (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)

In this contribution to the Common Knowledge symposium “Fuzzy Studies,” the authors, all of whom work in the field of science, technology, and society, begin from the assumption that, as Bruno Latour has put it, “we have never been modern.” They accept the STS thesis that, while modern practices purport to be entirely rational and coherent, on closer inspection they turn out to be as much noncoherent as coherent. This article poses the question of what forms “noncoherences” take and how (...) they are managed. The basic argument is that there is a range of styles of noncoherence or “modes of syncretism.” In small case studies, the authors identify six such modes or styles, which they term denial, domestication, separation, care, conflict, and collapse. Given that consistency and coherence seem less important now than they were once taken to be — and given that the conditions of possibility for purity are, in any case, in decline — this list and its supporting case studies, while not meant to be definitive, are offered as a way of understanding how practices that do not cohere may still function and fit together admirably. (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, A. Klimczuk, Generations, intergenerational relationships, generational policy: A multilingual compendium, 17 languages, Universität Konstanz, Konstanz 2017, 428pp. TS - RIS M4 - Citavi.

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

The members of the International Network for the Analysis of Intergenerational Relations proudly present the most recent issue of the jointly produced compendium "Generations, Intergenerational Relations and Generational Policy". This new version includes 17 languages: English, French, German, Italian, Spanish, Polish, Portuguese, Swedish, Hungarian, Turkish, Romanian, Lithuanian, Slovenian, Bosnian, Ukrainian, Russian and Chinese. The layout of the compendium is designed for using it to translate the specific concepts and terminology of research on generations and intergenerational relations from one language into (...) another. **** K. Lüscher, A. Klimczuk, Generations, intergenerational relationships, generational policy: A multilingual compendium, 17 languages, Universität Konstanz, Konstanz 2017, 428pp. (shrink)

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