Robust technology infrastructure is needed to enable learning health care systems to improve quality, access, and cost. Such infrastructure relies on the trust and confidence of individuals to share their health data for healthcare and research. Few studies have addressed consumers’ views on electronic data sharing and fewer still have explored the dual purposes of healthcare and research together. The objective of the study is to explore factors that affect consumers’ willingness to share electronic health information for healthcare and research. (...) This study involved a random-digit dial telephone survey of 800 adult Californians conducted in English and Spanish. Logistic regression was performed using backward selection to test for significant associations of each explanatory variable with the outcome variable. The odds of consent for electronic data sharing for healthcare decreased as Likert scale ratings for EHR impact on privacy worsened, odds ratio = 0.74, 95% CI [0.60, 0.90]; security, OR = 0.80, 95% CI [0.66, 0.98]; and quality, OR = 0.59, 95% CI [0.46–0.75]. The odds of consent for sharing for research was greater for those who think EHR will improve research quality, OR = 11.26, 95% CI [4.13, 30.73]; those who value research benefit over privacy OR = 2.72, 95% CI [1.55, 4.78]; and those who value control over research benefit OR = 0.49, 95% CI [0.26, 0.94]. Consumers’ choices about electronically sharing health information are affected by their attitudes toward EHRs as well as beliefs about research benefit and individual control. Design of person-centered interventions utilizing electronically collected health information, and policies regarding data sharing should address these values of importance to people. Understanding of these perspectives is critical for leveraging health data to support learning health care systems. (shrink)

The COVID-19 pandemic laid bare systemic inequities shaped by social determinants of health (SDoH). Public health agencies, legislators, health systems, and community organizations took notice, and there is currently unprecedented interest in identifying and implementing programs to address SDoH. This special issue focuses on the role of medical-legal partnerships (MLPs) in addressing SDoH and racial and social inequities, as well as the need to support these efforts with evidence-based research, data, and meaningful partnerships and funding.

Understanding the basics of ethics is essential for a physical therapist. Diagnostic skills, technical expertise, and knowledge of the body are insufficient; being a good clinician requires a moral education as well. Bioethics in Physical Therapy: A Reader helps students develop a deeper understanding of moral principles and their philosophical underpinnings. The text encourages readers to exercise their moral imaginations and prepares them to respond to professional conflicts in an ethical manner. The reader is organized in seven units. The text (...) begins with an introduction to classical moral theories, the fundamental philosophical pillars of biomedical ethics, and a history of ethics in physical therapy. Additional units explore such topics as moral distress and the choice to be ethical, acting with integrity in the face of uncertainty, and the importance of hope in the patient encounter. Students learn about moral courage, the broad reach of justice in the medical field, and the lived experience of illness. Each unit features an opening scenario, a section on cultivating professional values, introductions to the key topic and the readings, comprehension questions, and post-reading critical thinking questions that reference the opening scenario. Written to be engaging and accessible, Bioethics in Physical Therapy: A Reader is designed to help future therapists understand the importance of ethics in practice. It is an ideal resource for all courses in the discipline. (shrink)

In response to the intensifying vocationalisation and instrumentalisation of education, scholars have invoked the ideal of leisure and its educational embodiment in the tradition of liberal learning. Drawing on the work of Josef Pieper, this article seeks to bring to the fore an overlooked yet fundamental aspect of leisure, that of existential rest, a state of being and a mode of engagement with the world in which the basic outlook is one of affirmation of the goodness of the world, which (...) is experienced as being in harmony with oneself and the world. The article also suggests three different approaches to cultivating existential rest in education derived from the educational visions of Pieper, Michael Oakeshott and John Dewey. (shrink)

ABSTRACTThis research investigated whether precues engage proactive control to reduce emotional interference during speech production. A picture-word interference task required participants to name target pictures accompanied by taboo, negative, or neutral distractors. Proactive control was manipulated by presenting precues that signalled the type of distractor that would appear on the next trial. Experiment 1 included one block of trials with precues and one without, whereas Experiment 2 mixed precued and uncued trials. Consistent with previous research, picture naming was slowed in (...) both experiments when distractors were taboo or negative compared to neutral, with the greatest slowing effect when distractors were taboo. Evidence that precues engaged proactive control to reduce interference from taboo distractors was found in Experiment 1. In contrast, mixing precued trials in Experiment 2 resulted in no taboo cueing benefit. These results suggest that item-level proactive control can b... (shrink)

As a forum for philosophical discourse of religious studies as related to the world's women, the "Annual Review of Women in World Religions" fails. The first three issues display an unfortunately limited approach. Certain articles are promising, but editorial intellectual constraints appear to have circumscribed the philosophical latitude provided to contributors. In spite of the potential of the journal's topic area, it is doubtful it will soon succeed in emerging as a publication with adequate inclusionary liberality and ideal discursive freedom.

Addressing religion and feminism on a global scale, this unprecedented book contains a nuanced and fine-tuned treatment of seven of the world's religions from a feminist perspective by leading women scholars. The fact that these authors share a dual but undivided commitment both to themselves as women and to their traditions as adherents imparts to their voices a prophetic quality, and if Mahatma Gandhi is to be believed, even scriptural value.

The purpose of this article is to investigate how cultural meanings associated with the left ventricular assist device inform acceptance and experience of this innovative technology when it is used as a destination therapy. We conducted open-ended, semistructured interviews with family caregivers and patients who had undergone LVAD-DT procedures at six U.S. hospitals. A grounded theory approach was used for the analysis. Thirty-nine patients and 42 caregivers participated. Participants described a sense of obligation to undergo the procedure because of its (...) promise for salvation. However, once the device was implanted, patients described being placed into a liminal state of being neither sick nor healthy, with no culturally scripted role. Consideration of end-of-life decisions was complicated by the uncertainties about how patients with LVADs die. Pre-implantation communications among patient, family, and clinicians should take into account the impact of the technology on meaning, identity, and patient experience. (shrink)

This article investigates whether acts of plagiarism are predictable. Through a deductive, quantitative method, this study examines 517 students and their motivation and intention to plagiarize. More specifically, this study uses an ethical theoretical framework called the Theory of Reasoned Action and Planned Behavior to proffer five hypotheses about cognitive, relational, and social processing relevant to ethical decision making. Data results indicate that although most respondents reported that plagiarism was wrong, students with strong intentions to plagiarize had a more positive (...) attitude toward plagiarizing, believed that it was important that family and friends think plagiarizing is acceptable, and perceived that plagiarizing would be an easy task. However, participants in the current study with less intention to plagiarize hold negative views about plagiarism, do not believe that plagiarism is acceptable to family, friends or peers, and perceive that the act of plagiarizing would prove difficult. Based on these findings, this study considers implications important for faculty, librarians, and student support staff in preventing plagiarism through collaborations and outreach programming. (shrink)

We all know that renewable energies are important for environmental reasons. However, recent developments should open our eyes to the fact that they are even more critical for sustainable development. In this commentary, we argue that societal benefits should be included in renewable energy decisions. Specifically, we discuss their contributions to freedom, peace, and democracy.

BackgroundRadiotherapy is an essential component of cancer treatment, yet many countries do not have adequate capacity to serve all patients who would benefit from it. Allocation systems are needed to guide patient prioritization for radiotherapy in resource-limited contexts. These systems should be informed by allocation principles deemed relevant to stakeholders. This study explores the ethical dilemmas and views of decision-makers engaged in real-world prioritization of scarce radiotherapy resources at a cancer center in Rwanda in order to identify relevant principles.MethodsSemi-structured interviews (...) were conducted with a purposive sample of 22 oncology clinicians, program leaders, and clinical advisors. Interviews explored the factors considered by decision-makers when prioritizing patients for radiotherapy. The framework method of thematic analysis was used to characterize these factors. Bioethical analysis was then applied to determine their underlying normative principles.ResultsParticipants considered both clinical and non-clinical factors relevant to patient prioritization for radiotherapy. They widely agreed that disease curability should be the primary overarching driver of prioritization, with the goal of saving the most lives. However, they described tension between curability and competing factors including age, palliative benefit, and waiting time. They were divided about the role that non-clinical factors such as social value should play, and agreed that poverty should not be a barrier.ConclusionsMultiple competing principles create tension with the agreed upon overarching goal of maximizing lives saved, including another utilitarian approach of maximizing life-years saved as well as non-utilitarian principles, such as egalitarianism, prioritarianism, and deontology. Clinical guidelines for patient prioritization for radiotherapy can combine multiple principles into a single allocation system to a significant extent. However, conflicting views about the role that social factors should play, and the dynamic nature of resource availability, highlight the need for ongoing work to evaluate and refine priority setting systems based on stakeholder views. (shrink)

In this age of DNA computers and artificial intelligence, information is becoming disembodied even as the "bodies" that once carried it vanish into virtuality. While some marvel at these changes, envisioning consciousness downloaded into a computer or humans "beamed" _Star Trek_-style, others view them with horror, seeing monsters brooding in the machines. In _How We Became Posthuman,_ N. Katherine Hayles separates hype from fact, investigating the fate of embodiment in an information age. Hayles relates three interwoven stories: how information (...) lost its body, that is, how it came to be conceptualized as an entity separate from the material forms that carry it; the cultural and technological construction of the cyborg; and the dismantling of the liberal humanist "subject" in cybernetic discourse, along with the emergence of the "posthuman." Ranging widely across the history of technology, cultural studies, and literary criticism, Hayles shows what had to be erased, forgotten, and elided to conceive of information as a disembodied entity. Thus she moves from the post-World War II Macy Conferences on cybernetics to the 1952 novel _Limbo_ by cybernetics aficionado Bernard Wolfe; from the concept of self-making to Philip K. Dick's literary explorations of hallucination and reality; and from artificial life to postmodern novels exploring the implications of seeing humans as cybernetic systems. Although becoming posthuman can be nightmarish, Hayles shows how it can also be liberating. From the birth of cybernetics to artificial life, _How We Became Posthuman_ provides an indispensable account of how we arrived in our virtual age, and of where we might go from here. (shrink)

Scientists now agree that common diseases arise through interactions of genetic and environmental factors, but there is less agreement about how scientific research should account for these interactions. This paper examines the politics of quantification in gene–environment interaction research. Drawing on interviews and observations with GEI researchers who study common, complex diseases, we describe quantification as an unfolding moral economy of science, in which researchers collectively enact competing “virtues.” Dominant virtues include molecular precision, in which behavioral and social risk factors (...) are moved into the body, and “harmonization,” in which scientists create large data sets and common interests in multisited consortia. We describe the negotiations and trade-offs scientists enact in order to produce credible knowledge and the forms of discipline that shape researchers, their practices, and objects of study. We describe how prevailing techniques of quantification are premised on the shrinking of the environment in the interest of producing harmonized data and harmonious scientists, leading some scientists to argue that social, economic, and political influences on disease patterns are sidelined in postgenomic research. We consider how a variety of GEI researchers navigate quantification’s productive and limiting effects on the science of etiological complexity. (shrink)

Animal and human studies suggest that parenting style is transmitted from one generation to the next. The hypotheses of this study were that a mother’s rearing experiences would predict her own parenting resources and current maternal mood, motivation to care for her offspring, and relationship with her parents would underlie this association. In a subsample of 201 first-time mothers participating in the longitudinal Maternal Adversity, Vulnerability and Neurodevelopment project, we assessed a mother’s own childhood maltreatment and rearing experiences using the (...) Childhood Trauma Questionnaire and the Parental Bonding Instrument. At 6 months postpartum, mothers completed questionnaires on parenting stress, symptoms of depression, maternal motivation, and current relationship with their own parents. The sample consisted of mostly high socioeconomic status mothers recruited from Montréal or Hamilton, Canada, with an age range from 18 to 43 years. More severe maltreatment and less supportive rearing by the mother’s parents predicted increased parenting stress at 6 months. These associations were mediated through distinct psychosocial pathways: maltreatment on parenting stress through symptoms of depression ; maternal rearing on parenting stress through maternal motivation and symptoms of depression ; and paternal rearing on parenting stress through current relationship with the father. Maternal rearing experiences predict a mother’s own parenting resources though distinct psychosocial pathways, including depressed mood, maternal motivation, and social support. (shrink)

Royal versus Divine Authority: 7th Symposium on Egyptian Royal Ideology. Edited by Filip Coppins; Jiří Janák; and Hana Vymazalová. Königtum, Staat und Gesellschaft früher Hochkulturen, vol. 4,4. Wiesbaden: Harrassowitz Verlag, 2015. Pp. 358, illus. €84.

Large technical systems are integral to modern lifestyles but arduous to analyze. In this paper, we advance a conceptualization of LTS using the notion of mature “phases,” drawing from insights into innovation studies, science and technology studies, political science, the sociology of infrastructure, history of technology, and governance. We begin by defining LTS as a unit of analysis and explaining its conceptual utility and novelty, situating it among other prominent sociotechnical theories. Next, we argue that after LTS have moved through (...) the phases proposed by Thomas Hughes of invention, expansion, growth, momentum, and style, mature LTS undergo the additional phases of reconfiguration, contestation, and eventually stagnation and decline. We illustrate these analytical phases with historical case studies and the conceptual literature, and close by suggesting future research to refine and develop the LTS framework, particularly related to more refined typologies, temporal dimensions, and a broadening of system users. We aim to contribute to theoretical debates about the coevolution of LTS as well as empirical discussions about system-related use, sociotechnical change, and policy-making. (shrink)

The author examines belief-centered and act-centered conceptions ofracism through a discussion and critique ofconceptions ofrace and racism offered by K. Anthony Appiah, J.L.A. Garcia, and Michael Phillips.

Volume 24, Issue 7, July 2024, Page 6-12.

With the growth of precision medicine research on health data and biospecimens, research institutions will need to build and maintain long-term, trusting relationships with patient-participants. While trust is important for all research relationships, the longitudinal nature of precision medicine research raises particular challenges for facilitating trust when the specifics of future studies are unknown. Based on focus groups with racially and ethnically diverse patients, we describe several factors that influence patient trust and potential institutional approaches to building trustworthiness. Drawing on (...) these findings, we suggest several considerations for research institutions seeking to cultivate long-term, trusting relationships with patients: Address the role of history and experience on trust, engage concerns about potential group harm, address cultural values and communication barriers, and integrate patient values and expectations into oversight and governance structures. (shrink)

Background Immense volumes of personal health information are required to realize the anticipated benefits of artificial intelligence in clinical medicine. To maintain public trust in medical research, consent policies must evolve to reflect contemporary patient preferences. Methods Patients were invited to complete a 27-item survey focusing on: broad versus specific consent; opt-in versus opt-out approaches; comfort level sharing with different recipients; attitudes towards commercialization; and options to track PHI use and study results. Results 222 participants were included in the analysis; (...) 83% were comfortable sharing PHI with researchers at their own hospital, although younger patients were more uncomfortable than older patients. While 56% of patients preferred broad consent, 38% preferred specific consent; 6% preferred not sharing at all. The majority of patients preferred to be asked for permission before entry into a contact pool. Again, this trend was more pronounced for younger patients. Approximately half of patients were uncomfortable sharing PHI with commercial enterprises. Most patients preferred to track PHI usage, with the highest proportion once again reported by the youngest patients. A majority of patients also wished to be notified regarding study results. Conclusions While most patients were willing to share their PHI with researchers within their own institution, many preferred a transparent and reciprocal consent process. These data also suggest a generational shift, wherein younger patients preferred more specific consent options. Modernizing consent policies to reflect increased autonomy is crucial in fostering sustained public engagement with medical research. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Full Collection of Personal NarrativesJake Beery, Neethi Pinto, Marcia King, Laura Wachsmuth, Alisha, Katie L. Gholson, T.S. Moran, Calvin R. Gross, Joanne Alfred, Cindy Bitter, Jenna Bennett, Nadia Khan, Clarice Douille, Kristen Carey Rock, Adrienne Feller Novick, Andrea Eisenberg, Japmehr Sandhu, Katherine Bakke, Heer Hendry, Karan K. Mirpuri, and Katerina V. Liong• Being the Difference• Grieving One More Time• Echoes of Grief: Tales from an Emergency Medicine and (...) Critical Care Nurse• Searching for Peace in Death• “I’d Love to go Off the Grid and Never Come Back”• “A Mother’s Love”• Tiny Person, Big Impact• Night Shift• Cracked Armor• Who Tells the Story• Navigating Hard Situations that Medical School Cannot Prepare You For• The Wish• Break• Five More Minutes• I Saw My Reflection• The Aftermath• Where the Journey Begins• Lessons Learned in Room 208• Joint and Grief Aches• My First Loss: Carrying His Legacy• Grieving the Loss of What Medicine Was Supposed to BeCopyright © 2024 Johns Hopkins University Press... (shrink)

RFID tags, small microchips no bigger than grains of rice, are currently being embedded in product labels, clothing, credit cards, and the environment, among other sites. Activated by the appropriate receiver, they transmit information ranging from product information such as manufacturing date, delivery route, and location where the item was purchased to (in the case of credit cards) the name, address, and credit history of the person holding the card. Active RFIDs have the capacity to transmit data without having to (...) be activated by a receiver; they can be linked with embedded sensors to allow continuous monitoring of environmental conditions, applications that interest both environmental groups and the US military. The amount of information accessible through and generated by RFIDs is so huge that it may well overwhelm all existing data sources and become, from the viewpoint of human time limitations, essentially infinite. What to make of these technologies will be interrogated through two contemporary fictions, David Mitchell's Cloud Atlas and Philip K. Dick's Ubik. Cloud Atlas focuses on epistemological questions — who knows what about whom, in a futuristic society where all citizens wear embedded RFID tags and are subject to constant surveillance. Resistance takes the form not so much of evasion (tactical moves in a complex political Situation) but rather as a struggle to transmit information to present and future stakeholders in a world on the brink of catastrophe. Ubik, by contrast, focuses on deeper ontological questions about the nature of reality itself. Both texts point to the necessity to reconceptualize information as ethical action embedded in contexts and not merely as a quantitative measure of probabilities. (shrink)

The shortage of organs for transplantation by its nature prompts ethical dilemmas. For example, although there is an imperative to save human life and reduce suffering by maximising the supply of vital organs, there is an equally important obligation to ensure that the process by which we increase the supply respects the rights of all stakeholders. In a relatively unexamined practice in the USA, organs are procured from unrepresented decedents without their express consent. Unrepresented decedents have no known healthcare wishes (...) or advance care planning document; they also lack a surrogate. The Revised Uniform Anatomical Gift Act (RUAGA) of 2006 sends a mixed message about the procurement of organs from this patient population and there are hospitals that authorise donation. In addition, in adopting the RUAGA, some states included provisions that clearly allow organ procurement from unrepresented decedents. An important unanswered question is whether this practice meets the canons of ethical permissibility. The current Brief Report presents two principled approaches to the topic as a way of highlighting some of the complexities involved. Concluding remarks offer suggestions for future research and discussion. (shrink)

Despite the frequency of stillbirths, the subsequent implications are overlooked and underappreciated. We present findings from comprehensive, systematic literature reviews, and new analyses of published and unpublished data, to establish the effect of stillbirth on parents, families, health-care providers, and societies worldwide. Data for direct costs of this event are sparse but suggest that a stillbirth needs more resources than a livebirth, both in the perinatal period and in additional surveillance during subsequent pregnancies. Indirect and intangible costs of stillbirth are (...) extensive and are usually met by families alone. This issue is particularly onerous for those with few resources. Negative effects, particularly on parental mental health, might be moderated by empathic attitudes of care providers and tailored interventions. The value of the baby, as well as the associated costs for parents, families, care providers, communities, and society, should be considered to prevent stillbirths and reduce associated morbidity. (shrink)

We estimate that 208,000 deep brain stimulation (DBS) devices have been implanted to address neurological and neuropsychiatric disorders worldwide. DBS Think Tank presenters pooled data and determined that DBS expanded in its scope and has been applied to multiple brain disorders in an effort to modulate neural circuitry. The DBS Think Tank was founded in 2012 providing a space where clinicians, engineers, researchers from industry and academia discuss current and emerging DBS technologies and logistical and ethical issues facing the field. (...) The emphasis is on cutting edge research and collaboration aimed to advance the DBS field. The Eighth Annual DBS Think Tank was held virtually on September 1 and 2, 2020 (Zoom Video Communications) due to restrictions related to the COVID-19 pandemic. The meeting focused on advances in: (1) optogenetics as a tool for comprehending neurobiology of diseases and on optogenetically-inspired DBS, (2) cutting edge of emerging DBS technologies, (3) ethical issues affecting DBS research and access to care, (4) neuromodulatory approaches for depression, (5) advancing novel hardware, software and imaging methodologies, (6) use of neurophysiological signals in adaptive neurostimulation, and (7) use of more advanced technologies to improve DBS clinical outcomes. There were 178 attendees who participated in a DBS Think Tank survey, which revealed the expansion of DBS into several indications such as obesity, post-traumatic stress disorder, addiction and Alzheimer’s disease. This proceedings summarizes the advances discussed at the Eighth Annual DBS Think Tank. (shrink)

Volume 20, Issue 5, June 2020, Page 72-74.

Background Rapid ethical access to personal health information to support research is extremely important during pandemics, yet little is known regarding patient preferences for consent during such crises. This follow-up study sought to ascertain whether there were differences in consent preferences between pre-pandemic times compared to during Wave 1 of the COVID-19 global pandemic, and to better understand the reasons behind these preferences. Methods A total of 183 patients in the pandemic cohort completed the survey via email, and responses were (...) compared to the distinct pre-pandemic cohort ; all were patients of a large Canadian cancer center. The survey covered broad versus study-specific consent; opt-in versus opt-out contact approach; levels of comfort sharing with different recipients; perceptions of commercialization; and options to track use of information and be notified of results. Four focus groups were subsequently conducted to elucidate reasons motivating dominant preferences. Results Patients in the pandemic cohort were significantly more comfortable with sharing all information and biological samples, sharing information with the health care institution, sharing information with researchers at other hospitals, sharing PHI provincially, nationally and internationally compared to the pre-pandemic cohort. Discomfort with sharing information with commercial companies remained unchanged between the two cohorts. Significantly more pandemic cohort patients expressed a wish to track use of PHI, and to be notified of results. Thematic analysis uncovered that transparency was strongly desired on outside PHI use, particularly when commercialization was involved. Conclusions In pandemic times, patients were more comfortable sharing information with all parties, except with commercial entities, where levels of discomfort remained unchanged. Focus groups identified that the ability to track and receive results of studies using one’s PHI is an important way to reduce discomfort and increase trust. These findings meaningfully inform wider discussions on the use of personal health information for research during global crises. (shrink)

Social technology can improve the quality of older adults' social lives and mitigate negative mental and physical health outcomes associated with loneliness, but it should be designed collaboratively with this population. In this paper, we used participatory design methods to investigate how robots might be used as social facilitators for middle-aged and older adults in both the US and Japan. We conducted PD workshops in the US and Japan because both countries are concerned about the social isolation of these older (...) adults due to their rapidly aging populations. We developed a novel approach to participatory design of future technologies that spends 2/3 of the PD session asking participants about their own life experiences as a foundation. This grounds the conversation in reality, creates rapport among the participants, and engages them in creative critical thinking. Then, we build upon this foundation, pose an abstract topic, and ask participants to brainstorm on the topic based on their previous discussion. In both countries, participants were eager to actively discuss design ideas for socially facilitative robots and imagine how they might improve their social lives. US participants suggested design ideas for telepresence robots, social distancing robots, and social skills artificial intelligence programs, while Japanese participants suggested ideas for pet robots, robots for sharing experiences, and easy-to-operate instructor robots. Comparing these two countries, we found that US participants saw robots as tools to help facilitate their social connections, while Japanese participants envisioned robots to function as surrogate companions for their parents and distract them from loneliness when they were unavailable. With this paper, we contribute to the literature in two main ways, presenting: A novel approach to participatory design of future technologies that grounds participants in their everyday experience, and Results of the study indicating how middle-aged and older adults from the US and Japan wanted technologies to improve their social lives. Although we conducted the workshops during the COVID-19 pandemic, many findings generalized to other situations related to social isolation, such as older adults living alone. (shrink)