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Background: Newer "closed-loop" neurostimulation devices in development could, in theory, induce changes to patients' personalities and self-perceptions. Empirically, however, only limited data of patient and family experiences exist. Responsive neurostimulation (RNS) as a treatment for refractory epilepsy is the first approved and commercially available closed-loop brain stimulation system in clinical practice, presenting an opportunity to observe how conceptual neuroethical concerns manifest in clinical treatment. Methods: We conducted ethnographic research at a single academic medical center with an active RNS treatment program and collected data via direct observation of clinic visits and in-depth interviews with 12 patients and their caregivers. We used deductive and inductive analyses to identify the relationship between these devices and patient changes in personality and self-perception. Results: Participants generally did not attribute changes in patients' personalities or self-perception to implantation of or stimulation using RNS. They did report that RNS affected patients' experiences and conceptions of illness. In particular, the capacity to store and display electrophysiological data produced a common frame of reference and a shared vocabulary among patients and clinicians. Discussion: Empirical experiences of a clinical population being treated with closed-loop neuromodulation do not corroborate theoretical concerns about RNS devices described by neuroethicists and technology developers. However, closed-loop devices demonstrated an ability to change illness experiences. Even without altering identify and self-perception, they provided new cultural tools and metaphors for conceiving of epilepsy as an illness and of the process of diagnosis and treatment. These findings call attention to the need to situate neuroethical concerns in the broader contexts of patients' illness experiences and social circumstances. [ABSTRACT FROM AUTHOR]

Objective: Persons with behavioral variant frontotemporal dementia (bvFTD) have been shown to exhibit altered morality, manifested as atypical utilitarian tendencies towards sacrificial moral dilemmas. This takes the form of endorsing harmful actions towards single individuals, including vulnerable or relationally close individuals (e.g. children, loved ones), in order to promote the greater good for the community or society as a whole. The dual process model of moral cognition interprets such tendencies as deriving from a lack of emotional engagement, whereas moral emotion theory views them as selective impairment in prosocial sentiments. We hypothesized that both the widespread neuropsychological practice of using sacrificial moral dilemmas to evaluate moral reasoning, and these tests' overreliance on quantitative results, inadequately represent how persons with bvFTD reason and feel while responding to moral dilemmas. To evaluate this hypothesis, we applied a mixed-methods approach to identify the reasoning, motivations, and emotional experiences of bvFTD persons during their deliberation about moral scenarios. Participants and Methods: We conducted semi-structured interviews with 14 participants: 7 persons with bvFTD & 7 older healthy controls. Transcripts were coded in Atlas 5.0 to characterize the underlying reasoning, emotions, response processes, and values that emerged when responding to a structured set of moral dilemmas. Our dilemmas measured utilitarian reasoning holistically by incorporating both sacrificial and impartial/altruistic components, as suggested by the 2-dimensional model of utilitarianism. Results: Unexpectedly, bvFTD persons articulated a prosocial compass when asked about their values, stating they were organizing their choices predominantly around kindness and altruism, even when they were making choices to harm loved ones or vulnerable individuals to promote the greater good. During moral deliberation, persons with bvFTD showed significantly less metacognition (bvFTD = 10%, HC = 90%) but reported more positive emotions (joy; bvFTD = 83%, HC = 17%) than negative (frustration; bvFTD = 30 %, HC = 70 %) compared to controls. Qualitatively, this observed emotional outlook was typically coupled with a more rigid, simplistic viewpoint (e.g., "I felt great, it was a no brainer"), suggesting a moral understanding lacking emotional nuance and complexity. Conclusions: Our data showed that bvFTD persons' utilitarian responses to moral dilemmas did not arise from an emotionally flat or antisocial cognitive perspective, but instead were guided by positive emotionality, simplistic reasoning, and prosocial values. These findings challenge the current understanding of the reasoning processes and experiences of persons with bvFTD and highlight the importance of incorporating mixed method approaches in dementia research that take into consideration the viewpoint of the cognitively compromised individual. [ABSTRACT FROM AUTHOR]

• Patients undergoing resection versus RNS report a common experience of circuitous treatment paths. • Resection patients emphasized the risk of loss of core traits and functions but also the prospect of a definitive cure. • RNS patients emphasized the reversibility of implantation but perceived the procedure as primarily palliative. • These insights into patient perspectives may help identify areas of targeted exploration and counseling by clinicians. This study explored illness experiences and decision-making among patients with epilepsy who underwent two different types of surgical interventions: resection versus implantation of the NeuroPace Responsive Neurostimulation System (RNS). We recruited 31 participants from a level four epilepsy center in an academic medical institution. We observed 22 patient clinic visits (resection: n = 10, RNS: n = 12) and conducted 18 in-depth patient interviews (resection: n = seven, RNS: n = 11); most visits and interviews included patient caregivers. Using an applied ethnographic approach, we identified three major themes in the experiences of resection versus RNS patients. First, for patients in both cohorts, the therapeutic journey was circuitous in ways that defied standardized first-, second-, and third- line of care models. Second, in conceptualizing risk, resection patients emphasized the permanent loss of "taking out" brain tissue whereas RNS patients highlighted the reversibility of "putting in" a device. Lastly, in considering benefit, resection patients perceived their surgery as potentially curative while RNS patients understood implantation as primarily palliative with possible additional diagnostic benefit from chronic electrocorticography. Insight into the perspectives of patients and caregivers may help identify key topics for counseling and exploration by clinicians. [ABSTRACT FROM AUTHOR]

• In dementia care, the past imposes itself on people with dementia, through a process I call "forced continuity". • It centres on the notion of a former self of the person with dementia, which ought to be continued. • The internalisation of cultural values shapes the way in which notions of the person with dementia are transmitted and reproduced. • Societal pressures to remain the person they were before their cognitive abilities declined do not halt at a nursing home's borders. [ABSTRACT FROM AUTHOR]

This study reports on 13 semistructured in-depth interviews to qualitatively explore the experiences of individuals who publicly shared their direct-to-consumer genetic testing results on the platform openSNP. In particular, we focused on interviewees' understanding of privacy. Participants reported that the likelihood and the magnitude of privacy harms depend on gender, ethnicity, sexual orientation, the stigma associated with certain clinical conditions, the existence of adequate legislation, and the nature of national health care systems. Some participants expressed the view that those who enjoy higher socioeconomic status or are better protected by their country's legislation have a responsibility to share their genetic data. Our study shows that people who share their genetic data publicly online—far from being insensitive to privacy risks—have a complex understanding of the social, relational, and contextual nature of genetic privacy. [ABSTRACT FROM AUTHOR]

We are members of an interdisciplinary research team examining ethical issues in novel neurotechnologies, and we bring to the project our different disciplinary backgrounds in sociology and clinical neurology. Unlike mental health professionals or other health professionals, ethnographic researchers do not approach research participants from a position of professional authority, and their engagement with participants is not intended as therapeutic ([2]). In some jurisdictions, Mr. Vine's case is one in which reporting to Adult Protective Services would be mandatory for a clinician researcher, while in others this may depend on how local statutes codify notions such as self-harm or self-neglect. [Extracted from the article]

Abstract: This article reports an ethnographic study of the handover routines in Germany's first dementia village, with a central focus on how care is balanced between domestic intimacy and institutional detachment. The term ‘professionalised intimacy’ is used for the vivid interplay between comfort and intimacy that renders the interaction between care workers and residents far more complex than previous theories have articulated. Because of the intimacy involved in community building, however, the promise of personalised care must clash with the bureaucratic structures of an official institution, potentially depriving the care workers of their public, respected identity in the process. The study further suggests that most care workers, in fact, support this division between domestic intimacy and institutional detachment. Even if they subscribe to a dementia village's philosophy of personalised care, their medical training and enculturation has endowed them with a habitus compatible with the modern health profession, with incentives on achieving quantifiable health goals. The dementia village is thus illustrated as a pioneering health care experiment that negotiates rivalling discourses of intimacy, professionalisation, and medicalisation. [ABSTRACT FROM AUTHOR]

We explored the characteristics and motivations of people who, having obtained their genetic or genomic data from Direct-To-Consumer genetic testing (DTC-GT) companies, voluntarily decide to share them on the publicly accessible web platform openSNP. The study is the first attempt to describe open data sharing activities undertaken by individuals without institutional oversight. In the paper we provide a detailed overview of the distribution of the demographic characteristics and motivations of people engaged in genetic or genomic open data sharing. The geographical distribution of the respondents showed the USA as dominant. There was no significant gender divide, the age distribution was broad, educational background varied and respondents with and without children were equally represented. Health, even though prominent, was not the respondents’ primary or only motivation to be tested. As to their motivations to openly share their data, 86.05% indicated wanting to learn about themselves as relevant, followed by contributing to the advancement of medical research (80.30%), improving the predictability of genetic testing (76.02%) and considering it fun to explore genotype and phenotype data (75.51%). Whereas most respondents were well aware of the privacy risks of their involvement in open genetic data sharing and considered the possibility of direct, personal repercussions troubling, they estimated the risk of this happening to be negligible. Our findings highlight the diversity of DTC-GT consumers who decide to openly share their data. Instead of focusing exclusively on health-related aspects of genetic testing and data sharing, our study emphasizes the importance of taking into account benefits and risks that stretch beyond the health spectrum. Our results thus lend further support to the call for a broader and multi-faceted conceptualization of genomic utility. [ABSTRACT FROM AUTHOR]

This article focuses on the social and cultural aspects of the unprecedented and unparalleled proliferation of food-related allergies and intolerances. It thus aims to contribute to filling the theoretical lacunae in the current sociological approach to this fairly recent phenomenon. The article’s framework is divided into four segments. First, the rise in food allergies is placed within the field of the social history and medicalization of allergies, and seeks to understand the phenomenon in the context of the industrialized modern world. The following section discusses how and why lay experts are increasingly dominating the food allergy-related discourse. Drawing on recent empirical data, it is further shown how food allergies rise along with a population’s affluence and education. Third, the idiosyncrasies of food allergies and intolerances are addressed with respect to food consumption and its changing social implications. It is argued that individualization places less pressure on individuals to conform to broader social norms of food refusal, which offers the sufferers with a newly acquired sense of control over a random, scientified, and confounding food availability and provides a medium to covertly convey their educational and socioeconomic background. Lastly, the health belief model is applied in order to suggest a further potential explanation for the current increase in self-reported food allergies and intolerances. [ABSTRACT FROM AUTHOR]

This paper examines and portrays the production side of the custom publishing field with a primary focus on the UK, especially Greater London. Despite its prevalence, custom publishing has not received the same attention from media scholars, which is mirrored by the sometimes inappropriate, and even confusing terminologies attached to it. Hence, this paper aims to offer definitions characterizing the custom publishing branch whilst assessing the weaknesses and ambiguities in current definitions used in marketing and communications literature. Whereas a number of themes emerge from the study, the main focus is to locate the industry within the broader field of cultural production. Based on sociologist Pierre Bourdieu's field theory, the study looks at the heteronomous-and hence externally determined-principle inherent in the relationship between the contracting companies and the contracted writers. Furthermore, the research details the resources or capital, which form the basis of the publishers' work, and how the struggle between the economic and symbolic capitals is manifested in the three pillars (the account managers, the editorial, and the design teams). Finally, it is argued that despite displaying many of the traits Bourdieu's associates with a heteronomous field, custom publishers rely on an important degree of autonomy, which is institutionalized within the field itself. [ABSTRACT FROM AUTHOR]