Digital medicine is a medical treatment that combines technology with drug delivery. The promises of this combination are continuous and remote monitoring, better disease management, self-tracking, self-management of diseases, and improved treatment adherence. These devices pose ethical challenges for patients, providers, and the social practice of medicine. For patients, having both informed consent and a user agreement raises questions of understanding for autonomy and informed consent, therapeutic misconception, external influences on decision making, confidentiality and privacy, and device dependability. For providers, (...) digital medicine changes the relationship where trust can be verified, clinicians can be monitored, expectations must be managed, and new liability risks may be assumed. Other ethical questions include direct third-party monitoring of health treatment, affordability, and planning for adverse events in the case of device malfunction. This article seeks to lay out the ethical landscape for the implementation of such devices in patient care. (shrink)

Surrogate (proxy) decision makers must make research decisions for people with dementia who lack decision-making capacity. Proxies’ decision-making processes are minimally understood. We randomly assigned 82 proxies of AD patients to informed consent for one of three hypothetical protocols with differing levels of risk and benefit. Proxies answered questions about potential benefits of the described research to the patient and society, as well as about whether they would enroll their relative and why or why not. Proxies interested in enrolling their (...) relative cited the potential for direct benefit to their relative, altruism, and trust in researchers. Those declining cited risks, inconvenience, and stage of illness. Proxies weighed numerous factors, incorporating both substituted judgment and best interests standards in their decision-making processes. Although further empirical work is needed to understand the influences on and adequacy of proxies’ decision making regarding research, these findings can help inform policy regarding surrogate consent. (shrink)

Recent studies show that psychiatry residents express a relatively greater need for ethics curricula than their colleagues in other specialties. Such studies have been limited in their generalizability because they were conducted at one site. This study of 151 psychiatry residents at seven U.S. psychiatry programs aims to address that limitation. Residents were surveyed on issues pertaining to ethics and professionalism education. Participants were found to support such curricula during training and to value its relevance to the practice of psychiatry. (...) Gender differences and the influence of the “hidden curriculum” on such results merit further study. (shrink)

Abstract:Vulnerability is an important criterion to assess the ethical justification of the inclusion of participants in research trials. Currently, vulnerability is often understood as an attribute inherent to a participant by nature of a diagnosed condition. Accordingly, a common ethical concern relates to the participant’s decisionmaking capacity and ability to provide free and informed consent. We propose an expanded view of vulnerability that moves beyond a focus on consent and the intrinsic attributes of participants. We offer specific suggestions for how (...) relational aspects and the dynamic features of vulnerability could be more fully captured in current discussions and research practices. (shrink)

Although written consent forms are standard in clinical research, there is little regulatory or empirical guidance regarding how to most effectively review consent forms with potential participants. We developed an algorithm for embedding five questions with corrective feedback while reading consent forms with potential participants, and then applied it in the context of seven clinical research studies. A substantial proportion of participants within each protocol displayed initially inadequate responses to at least one question, but after the protocol elements were explained (...) again, most people demonstrated adequate understanding of them. These data illustrate the need for more attention not just to the content of consent forms, but also to the manner in which the forms are incorporated into the consent process. Embedding explicit inquiries about key protocol elements during consent form review and giving corrective feedback appears to be a simple yet effective way to foster better understanding of disclosed information. (shrink)

The effects of research ethics training on medical students' attitudes about clinical research are examined. A preliminary randomized controlled trial evaluated 2 didactic approaches to ethics training compared to a no-intervention control. The participant-oriented intervention emphasized subjective experiences of research participants (empathy focused). The criteria-oriented intervention emphasized specific ethical criteria for analyzing protocols (analytic focused). Compared to controls, those in the participant-oriented intervention group exhibited greater attunement to research participants' attitudes related to altruism, trust, quality of relationships with researchers, desire (...) for information, hopes about participation and possible therapeutic misconception, importance of consent forms, and deciding quickly about participation. The participant-oriented group also agreed more strongly that seriously ill people are capable of making their own research participation decisions. The criteria-oriented intervention did not affect learners' attitudes about clinical research, ethical duties of investigators, or research participants' decision making. An empathy-focused approach affected medical students' attunement to research volunteer perspectives, preferences, and attributes, but an analytically oriented approach had no influence. These findings underscore the need to further examine the differential effects of empathy-versus analytic-focused approaches to the teaching of ethics. (shrink)

The effects of research ethics training on medical students' attitudes about clinical research are examined. A preliminary randomized controlled trial evaluated 2 didactic approaches to ethics training compared to a no-intervention control. The participant-oriented intervention emphasized subjective experiences of research participants. The criteria-oriented intervention emphasized specific ethical criteria for analyzing protocols. Compared to controls, those in the participant-oriented intervention group exhibited greater attunement to research participants' attitudes related to altruism, trust, quality of relationships with researchers, desire for information, hopes about (...) participation and possible therapeutic misconception, importance of consent forms, and deciding quickly about participation. The participant-oriented group also agreed more strongly that seriously ill people are capable of making their own research participation decisions. The criteria-oriented intervention did not affect learners' attitudes about clinical research, ethical duties of investigators, or research participants' decision making. An empathy-focused approach affected medical students' attunement to research volunteer perspectives, preferences, and attributes, but an analytically oriented approach had no influence. These findings underscore the need to further examine the differential effects of empathy-versus analytic-focused approaches to the teaching of ethics. (shrink)

This book provides ready to use strategies to promote student engagement in online spaces using a variety of tools and strategies to promote student success and retention.

Much is being made of local food. It is at once a social movement, a diet, and an economic strategy—a popular solution—to a global food system in great distress. Yet, despite its popularity or perhaps because of it, local food (especially in the US) is also something of a chimera if not a tool of the status quo. This paper reflects on and contrasts aspects of current local food rhetoric with Dalhberg’s notion of a regenerative food system. It identifies three (...) problematic emphases—the locavore emphasis, the Wal-Mart emphasis, and the Pollan emphasis—and argues that they are shifting local food (as a concept and a social movement) away from the deeper concerns of equity, citizenship, place-building, and sustainability. It is suggested that local food activists and advocates might consider the use of multiple methodologies and forms of expression to explore the integration and reintegration of local food into diverse and redundant place-based practice. A short case study of a low-income, urban neighborhood in Lansing, Michigan, illustrates the value of contextual analysis for more fully enabling the local food movement and a regenerative food system. (shrink)

The 2006 outbreak of E. coli O157:H7, traced to bagged spinach from California, illustrates a number of contradictions. The solutions sought by many politicians and popular food analysts have been to create a centralized federal agency and a uniform set of production standards modeled after those of the animal industry. Such an approach would disproportionately harm smaller-scale producers, whose operations were not responsible for the epidemic, as well as reduce the agroecological diversity that is essential for maintaining healthy human beings (...) and ecosystems. Why should responses that only reinforce the problem be proffered? We use the framework of accumulation and legitimation to suggest corporate and government motives for concealing underlying problems and reinforcing powerful ideologies of individualism, scientism, and centralizing authority. Food safety (or the illusion of safety) is being positioned to secure capital rather than public welfare. We propose implementing the principle of subsidiarity as a more democratic and decentralized alternative. Because full implementation of this principle will be resisted by powerful interests, some promising intermediate steps include peer production or mass collaboration as currently applied to disease prevention and surveillance, as well as studying nascent movements resisting current food safety regulations. (shrink)

This essay tells a story. It is a story of the author's experience with community supported agriculture (CSA). It is also a story that depicts the difficulties of academic activism and grass-roots engagement. As an academic and an activist, the author argues that it is important to admit and share experiences that are “less than perfect,” since they are the basis for a more complete knowledge and a more organic existence, individually, collectively, sensually, and intellectually.

This paper questions Hegel’s critique to the central place that Romantic authors Friedrich Schlegel andNovalis gave to the dimension of affection in their philosophical thinking, as well as to the way theylink philosophy and poetry. The summit of this affective and poetical tendency of the Romantics is theso-called Sehnsucht – the infinite longing or aspiration – which Hegel criticizes in a very truculentmanner. The interest of this debate is not limited to the studies on the famous controversy Hegelversus Romanticism; in (...) a broader sense, it presents a singular case of a certain dissent on the way howphilosophy takes a stand on the matter of affection and poetry. In Hegel’s case, this stand is one thatposes a strong hierarchy in which reason and the conceptual activity of thinking are superior to thedimension of feelings, and this hierarchy also unfolds as a superiority of the philosophical over thepoetical – while the Romantics endeavoured, precisely, to unravel such hierarchy. This paper defendsthe importance and deepness of the affective dimension promoted by the Romantics, whilst alsoattempts to deconstruct some of the main assumptions of Hegel’s critique. (shrink)

The purpose of this work is to get to know which are the most frequent factors of stress in the childhood and, considering that the perception of the threat is intermediate by the characteristics of each subject, establish if there is any connection between those events taken as threatening and t..

``Civic agriculture'' identifies adiverse and growing body of food and farmingenterprises fitted to the needs of localgrowers, consumers, rural economies, andcommunities. The term lends shape andlegitimacy to development paradigms that existin opposition to the global,corporately-dominated food system. Civicagriculture also widens the scope of ag-relatedconcerns, moving away from a strictlymechanistic focus on production and capitalefficiency, and toward the more holisticreintegration of people in place. To date,researchers and practitioners have attendedclosely to the economic benefits of newmarketing arrangements and institutions (e.g.,value-added co-ops, CSAs, (...) and farmer'smarkets). Local food and farming has a criticalrole to play in the development of analternative commerce. At the same time, this isonly half the promise of civic agriculture.Civic agriculture can (and should) promotecitizenship and environmentalism within bothrural and urban settings not only throughmarket-based models of economic behavior, butthrough common ties to place and physicalengagement with that place. (shrink)

This essay tells a story. It is a story of the author's experience with community supported agriculture (CSA). It is also a story that depicts the difficulties of academic activism and grass-roots engagement. As an academic and an activist, the author argues that it is important to admit and share experiences that are “less than perfect,” since they are the basis for a more complete knowledge and a more organic existence, individually, collectively, sensually, and intellectually.

In the US, an increasingly popular local food movement is propelled along by structural arguments that highlight the inequity and unsustainablity of the current agri-food system and by individually based arguments that highlight personal health and well-being. Despite clear differences in their foci, the deeper values contained in each argument tend to be neglected or lost, while local innovations assume instrumental and largely market-based forms. By narrowing their focus to the rational and the economic, movement activists tend to overlook (or (...) marginalize) the role of the sensual, the emotional, the expressive for maintaining layered sets of embodied relationships to food and to place. This paper seeks to show that cultural and nonrational elements are fundamental to local food discussions. It proceeds from the assumption that, without them as full partners, the movement cannot be sustained in any felt, practiced, or committed way. To this end, it discusses the concept of place and bodies in place, as well as the connections between the ecological and the cultural, the sensual and the scientific. It offers a new set of questions and conceptual tools with which advocates and activists may “ground,” and thereby revalue and restore, the promise and practice of local food. (shrink)

To examine whether anticipatory attention or expectancy is a cognitive process that is automatic or requires conscious control, we employed a paired-stimulus event-related potential paradigm during the transition to sleep. The slow negative ERP wave observed between two successive stimuli, the Contingent Negative Variation , reflects attention and expectancy to the second stimulus. Thirteen good sleepers were instructed to respond to the second stimulus in a pair during waking sessions. In a non-response paradigm modified for sleep, participants then fell asleep (...) while tones played. As expected, N1 decreased and P2 increased in amplitude systematically with the loss of consciousness at sleep onset; the CNV was increasingly more positive. Sleep onset latency was correlated with the amplitude of the CNV. The systematic attenuation of the CNV waveform at sleep onset and its absence in sleep indicates that anticipatory attention requires endogenous conscious control. (shrink)

A survey of purchasing professionals in the Arizona state government was conducted to determine how familiar the buyers were with the Arizona laws regarding ethical conduct, what ethical standards they followed in purchasing, and what types of ethical dilemmas they faced in their work. The findings indicate that no serious ethical problems exist among the respondents. Employees in the centralized purchasing office seemed to act somewhat more ethically than buyers in peripheral offices, however.

Given recent technological advances, we now are able to invade personal privacy as never before. The challenge in the business community is to make the most of the opportunities presented by the growth in communication technology while, at the same time, protecting what remains of individual privacy. The conflict between technological advances and privacy concerns is not new, but it has grown exponentially in recent years, and the development of a data protection scheme in the European Union lends a certain (...) economic urgency to meeting the challenge.Pursuant to a Directive adopted by the European Union, privacy protections throughout the EU must become more stringent and consistent throughout EU member countries. One area of great concern to the United States is the Directive's requirement for certain minimum standards of privacy protection in countries receiving information from member countries. Given the limited protections available in the United States, it does not appear that the United States meets these minimum standards. The purpose of this paper is to critically analyze the existing measurements of global privacy protections and to propose a new model which allows for their comparative evaluation. (shrink)

Michigan Harvest Gathering is a popular and nationally acclaimed antihunger campaign. It represents a state-sponsored partnership among public, private, and nonprofit institutions “to improve conditions for Michigan's citizens in need". This paper reviews the program, and in the process, critically examines its underlying assumptions about the nature of hunger and helping, about those who are hungry, and about the relationship of agriculture to the remediation of hunger throughout the state. It argues that, in keeping with Michigan's corporatist orientation, the program (...) valorizes the agrofood industry at the expense of sustained public welfare. An alternative approach based on the development of greater local food autonomy provides a programmatic contrast to the elaboration of a “helping” industry designed to deliver emergency food assistance. (shrink)

A grassroots protest against a large-scale confinement swine facility in Jackson Country, Michigan resulted in an out-of-court settlement that redressed the concerns of local residents. At the same time, the protest was instrumental in modifying state-level legislation to secure greater legal protection for intensive animal agriculture. The paper traces this ironic turn of events. Original efforts to regulate industrial agriculture were publicly reinterpreted by agribusiness as an assault on the "right to farm" of all farmers, regardless of scale and organizational (...) management. Responding to this perception and informed by agricultural science, the state instituted voluntary "right to farm" guidelines. These guidelines based on state-of-the-art techniques and technologies now shield conforming operations from local complaints and "nuisance suits." By contrast, the rights of smaller farmers and rural residents are selectively disadvantaged. (shrink)

Michigan's approach to sustainability does not conflict with its efforts to reindustrialize state agriculture. As currently applied, agricultural sustainability remains a one-dimensional concept tightly focused on the condition of production resources and the larger physical environment. The social and political dimensions of sustainability, by contrast, are conspicuously absent. Using Michigan's ‘livestock initiative’ as a case in point, it is argued that this conceptualization conforms to and reinforces the reindustrialization of agriculture and the existing structure of power within the industry.

The deepening U.S. farm crisis has been accompanied by numerous benefit fund raisers, individual donations and volunteer programs—all an expression of cooperation and concern on the part of U.S. citizens, farmer and non-farmer alike. These responses have received wide media attention and much public praise. A sense of patriotism and self-reliance underlies their popularity. Nevertheless, such efforts work to undermine their own ultimate objective—that of improving the economic circumstances of the family farm and farm family.This irony, it is argued, arises (...) from the fact that these charitable responses typically depoliticize the nature of the U.S. farm crisis. First, they deflect public attention away from the larger economic context and the structural inequities within it. Second they revitalize agrarian-based myths which serve to rationalize and to reproduce the ‘independent’ behavior of small, commercial farmers. Finally, it is argued that the depoliticization of the farm crisis is itself a political strategy, one which supports and legitimizes ‘business as usual’ and is compatible with the interests of corporate agriculture. (shrink)

The current crisis in U.S. agriculture has broadcast a rather simplex message. It is that the traditional family farm is in serious trouble. This message is apparent in the agricultural programs that have emerged in direct response to the farm crisis. Using Michigan's experience as illustration, these programs are shown to share similar objectives supported by a singular policy orientation. They utilize a ‘farm as firm’ model and treat the small farm operation as the unit of problem analysis and remedial (...) action. They focus attention inward upon the ‘victim’ and attempt to change the victim's behavior through improved farm and farmer management.The paper considers the limitations inherent in this prevailing orientation. At the same time, it argues for the utility of an alternative perspective—one that places the farm in a wider context and considers the relationships between the farmer/victim and those who are more powerful—locally, nationally, and internationally. It advocates the need for research and programs that question these extra-farm relationships and their implications for farmer behavior. If agricultural programs are to assist the family farm, on any but a short-term basis, it is these relationships, and not the farmer, that must be changed. (shrink)

Severe staffing shortages have emerged as a prominent threat to maintaining usual standards of care during the COVID-2019 pandemic. In dire settings of crisis capacity, healthcare systems assume the ethical duty to maximise aggregate population-level benefit of existing resources. To this end, existing plans for rationing mechanical ventilators and intensive care unit beds in crisis capacity focus on selecting individual patients who are most likely to survive and prioritising these patients to receive scarce resources. However, staffing capacity is conceptually different (...) from availability of these types of discrete resources, and the existing strategy of identifying and prioritising patients with the best prognosis cannot be readily adapted to fit this real-world scenario. We propose that two alternative approaches to staffing resource allocation offer a better conceptual fit: prioritise the worst off: restrict access to acute care services and hospital admission for patients at relatively low clinical risk and prioritise staff interventions with high near-term value: universally restrict selected interventions and treatments that require substantial staff time and/or energy but offer minimal near-term patient benefit. These strategies—while potentially resulting in care that deviates from usual standards–support the goal of maximising the aggregate benefit of scarce resources in crisis capacity settings triggered by staffing shortages. This ethical framework offers a foundation to support institutional leaders in developing operationalisable crisis capacity policies that promote fairness and support healthcare workers. (shrink)

The aim of UK-REACH (“The United Kingdom Research study into Ethnicity And COVID-19 outcomes in Healthcare workers”) is to understand if, how, and why healthcare workers (HCWs) in the United Kingdom (UK) from ethnic minority groups are at increased risk of poor outcomes from COVID-19. In this article, we present findings from the ethical and legal stream of the study, which undertook qualitative research seeking to understand and address legal, ethical, and social acceptability issues around data protection, privacy, and information (...) governance associated with the linkage of HCWs’ registration data and healthcare data. We interviewed 22 key opinion leaders in healthcare and health research from across the UK in two-to-one semi-structured interviews. Transcripts were coded using qualitative thematic analysis. Participants told us that a significant aspect of Big Data research in public health is varying drivers of mistrust—of the research itself, research staff and funders, and broader concerns of mistrust within participant communities, particularly in the context of COVID-19 and those situated in more marginalised community settings. However, despite the challenges, participants also identified ways in which legally compliant and ethically informed approaches to research can be crafted to mitigate or overcome mistrust and establish greater confidence in Big Data public health research. Overall, our research indicates that a “Big Data Ethics by Design” approach to research in this area can help assure (1) that meaningful community and participant engagement is taking place and that extant challenges are addressed, and (2) that any new challenges or hitherto unknown unknowns can be rapidly and properly considered to ensure potential (but material) harms are identified and minimised where necessary. Our findings indicate such an approach, in turn, will help drive better scientific breakthroughs that translate into medical innovations and effective public health interventions, which benefit the publics studied, including those who are often marginalised in research. (shrink)

Progressive supranuclear palsy is a movement disorder with prominent tau neuropathology. Brain diseases with abnormal tau deposits are called tauopathies, the most common of which is Alzheimer's disease. Environmental causes of tauopathies include repetitive head trauma associated with some sports. To identify common genetic variation contributing to risk for tauopathies, we carried out a genome-wide association study of 1,114 individuals with PSP and 3,247 controls followed by a second stage in which we genotyped 1,051 cases and 3,560 controls for the (...) stage 1 SNPs that yielded P ≤ 10-3. We found significant previously unidentified signals associated with PSP risk at STX6, EIF2AK3 and MOBP. We confirmed two independent variants in MAPT affecting risk for PSP, one of which influences MAPT brain expression. The genes implicated encode proteins for vesicle-membrane fusion at the Golgi-endosomal interface, for the endoplasmic reticulum unfolded protein response and for a myelin structural component. © 2011 Nature America, Inc. All rights reserved. (shrink)

This article presents a new measure for intimate partner violence, the Gendered Violence in Partnerships Scale. The scale was developed in the Middle East with the aim to contribute to the global perspective on IPV by providing a contextual assessment tool for partner violence against women in violent-torn settings embedded in a patriarchal social structure. In an effort to generate a scale including IPV items relevant to the women of the population, a pragmatic step-wise procedure, with focus group discussions and (...) expert panels, was performed. The study’s analyses resulted in an 18-item checklist featuring four subscales of the GVPS that are based on a new typology of male-to-female partner violence presenting an alternative to the commonly used classification by type of abuse. Therein, dominating behaviors, existential threats, impulsive aggression, and aggravated physical assault were identified as reflective of the lived realities of women in the war-torn Middle East, which was confirmed in factor analysis. The scale’s psychometric properties were assessed with data from 1,009 displaced women in Iraq, and associations with measures of psychopathology were determined. Implications for IPV assessment and prevention possibilities in humanitarian contexts and beyond are discussed. (shrink)

The research presented in this paper focuses on business ethical values inChina, a country in which the process of institutional transformation has left cultural values in a state of flux. A survey was conducted in China and the U.S. by using five business scenarios. Survey results show similarities between the Chinese and American decision choices for three out of five scenarios. However, the results reveal significant differences in rationales, even forsimilar decisions. The implications of similarities and differences between the U.S. (...) and Chinese samples are discussed. (shrink)

The ambiguity regarding whether a given intervention is perceived as enhancement or as therapy might contribute to the angst that the public expresses with respect to endorsement of enhancement. We set out to develop empirical data that explored this. We used Amazon Mechanical Turk to recruit participants from Canada and the United States. Each individual was randomly assigned to read one vignette describing the use of a pill to enhance one of 12 cognitive, affective or social domains. The vignettes described (...) a situation in which an individual was using a pill to enhance the relevant domain under one of two possible enhancement conditions, one perceived as enhancing above the norm, what most people recognize as a clear case of enhancement, whereas the other perceived as enhancing towards the norm, with the individual using the enhancement having a modest, but subclinical deficit. Participants were asked how comfortable they were with the individual using the enhancement and about the impact the enhancement might have had in the individuals’ success in life. We found that irrespective of the domain to be enhanced, participants felt significantly more comfortable with ETN than with EAN, and they regarded the enhancement intervention as contributing to greater success in life with ETN rather than EAN. These data demonstrate that the therapy enhancement distinction is morally salient to the public, and that this distinction contributes to the angst that people feel when considering the propriety of CAS enhancement. (shrink)

This paper responds to the commentaries from Stacy Carter and Alan Cribb. We pick up on two main themes in our response. First, we reflect on how the process of setting standards for empirical bioethics research entails drawing boundaries around what research counts as empirical bioethics research, and we discuss whether the standards agreed in the consensus process draw these boundaries correctly. Second, we expand on the discussion in the original paper of the role and significance of the concept of (...) ‘integrating’ empirical methods and ethical argument as a standard for research practice within empirical bioethics. (shrink)