We surveyed selected physician members of the Society for Health and Human Values (SHHV) to study the benefits and problems of combining a medical career with a strong scholarly interest in the humanities. The 19 usable narrative responses characterized major benefits as experiential base and teaching opportunities. Barriers were numerous and fell under the general headings of: lack of time; lack of institutional rewards; lack of money for research and scholarship; lack of support from humanities peers; lack of suport from (...) medical colleagues; personal financial sacrifice; and lack of training. Some respondents offered creative solutions to these problems, including assertive negotiation of a job description, identification of helpful mentors, and various networking and administrative strategies. The survey results, while preliminary, suggest ways in which SHHV can assist clinicians who wish to develop a serious commitment to humanities study and teaching. (shrink)

Responding to a major pandemic and planning for allocation of scarce resources under crisis standards of care requires coordination and cooperation across federal, state and local governments in tandem with the larger societal infrastructure. Maryland remains one of the few states with no state-endorsed ASR plan, despite having a plan published in 2017 that was informed by public forums across the state. In this article, we review strengths and weaknesses of Maryland’s response to COVID-19 and the role of the Maryland (...) Healthcare Ethics Committee Network in bridging gaps in the state’s response to prepare health care facilities for potential implementation of ASR plans. Identified “lessons learned” include: Deliberative Democracy Provided a Strong Foundation for Maryland’s ASR Framework; Community Consensus is Informative, Not Normative; Hearing Community Voices Has Inherent Value; Lack of Transparency & Political Leadership Gaps Generate a Fragmented Response; Pandemic Politics Requires Diplomacy & Persistence; Strong Leadership is Needed to Avoid Implementing ASR … And to Plan for ASR; An Effective Pandemic Response Requires Coordination and Information-Sharing Beyond the Acute Care Hospital; and The Ability to Correct Course is Crucial: Reconsidering No-visitor Policies. (shrink)

Attempts to reclaim mindfulness from the commercial and corporate juggernaut it has become and to demonstrate its usefulness in spiritual (including Christian) life.

The circumstances surrounding Gordon’s care are complex. Although his acute septicemia has been managed, there remain concerns regarding the need for ongoing care to ameliorate his current pressure...

This paper describes findings of a research inquiry into the lived experience of homelessness in Peel, a suburban region located in the Greater Toronto Area in Ontario, Canada. It is based on the data from a collaborative project undertaken by members of the Faculties of Health and Education of York University with two local community organizations. The dominant theme of the narratives was that suburban homelessness is similar to being engulfed in a grotto of poverty , isolated from the rest (...) of the community and invisible to it. Once entrapped in the grotto, it is almost impossible to escape from it. There were four sub-themes: (a) falling into the grotto , (b) living/struggling in the grotto , (c) envisioning escape routes from the grotto, and (d) beauty, community and hope in the grotto . Following a discussion of the findings, researchers describe strategies to address homelessness through promotion of social justice for all. (shrink)

Ethically challenging situations routinely arise in the course of illness and healthcare. However, very few studies have surveyed patients and family members about their experiences with ethically challenging situations. To address this gap in the literature, we surveyed patients and family members at three hospitals. We conducted a content analysis of their responses to open-ended questions about their most memorable experience with an ethical concern for them or their family member. Participants described 219 unique ethical experiences that spanned many of (...) the prevailing themes of bioethics, including the patient-physician relationship, end-of-life care, decision-making capacity, healthcare costs, and genetic testing. Participants focused on relational issues in the course of experiencing illness and receiving medical care and concerns regarding the patient-physician encounters. Many concerns arose outside of a healthcare setting. These data indicate areas for improvement for healthcare providers but some concerns may be better addressed outside of the traditional healthcare setting. (shrink)

This is a true cross-cultural anthology which presents philosophers from different cultures in dialogue with one another. The text includes selections from both traditional and contemporary Western and non-Western philosophy: African American, Latin American, and feminist philosophers as well as Asian, African, Native American, and Islamic philosophers. The reader is organized by topic, and highlights the similarities and differences between Western and Non-Western philosophers -- it arranges selections so that authors speak to one another across cultures. Chapter introductions and section (...) introductions within chapters guide students. The second edition includes new sections on non-Western epistemology, the question of life after death, Rawls and criticism, and understanding others' experience and points of view. (shrink)

Large-scale sequencing tests, including whole-exome and whole-genome sequencing, are rapidly moving into clinical use. Sequencing is already being used clinically to identify therapeutic opportunities for cancer patients who have run out of conventional treatment options, to help diagnose children with puzzling neurodevelopmental conditions, and to clarify appropriate drug choices and dosing in individuals. To evaluate and support clinical applications of these technologies, the National Human Genome Research Institute and National Cancer Institute have funded studies on clinical and research sequencing under (...) the Clinical Sequencing Exploratory Research program as well as studies on return of results. Most of these studies use sequencing in real-world clinical settings and collect data on both the application of sequencing and the impact of receiving genomic findings on study participants. They are occurring in the context of controversy over how to obtain consent for exome and genome sequencing. (shrink)

This paper is intended to stimulate debate amongst stakeholders in the international research community on the topic of returning individual genetic research results to study participants. Pharmacogenetics and disease genetics studies are becoming increasingly prevalent, leading to a growing body of information on genetic associations for drug responsiveness and disease susceptibility with the potential to improve health care. Much of these data are presently characterized as exploratory (non‐validated or hypothesis‐generating). There is, however, a trend for research participants to be permitted (...) access to their personal data if they so choose. Researchers, sponsors, patient advocacy groups, ethics committees and regulatory authorities are consequently confronting the issue of whether, and how, study participants might receive their individual results. Noted international ethico‐legal guidelines and public policy positions in Europe and the United States are reviewed for background. The authors offer ‘Points‐to‐Consider’ regarding returning research results in the context of drug development trials based on their knowledge and experience. These considerations include: the clinical relevance of data, laboratory qualifications, informed consent procedures, confidentiality of medical information and the competency of persons providing results to participants. The discussion is framed as a benefit‐to‐risk assessment to balance the potential positive versus negative consequences to participants, while maintaining the integrity and feasibility of conducting genetic research studies. (shrink)

"Blending literary and photo-journalism, history, and storytelling, essays examine eighteen Texas dance halls in terms of their music, culture, and community. Also considers the predominantly Czech and German heritage from which these halls evolved, as we.

ABSTRACT This paper is intended to stimulate debate amongst stakeholders in the international research community on the topic of returning individual genetic research results to study participants. Pharmacogenetics and disease genetics studies are becoming increasingly prevalent, leading to a growing body of information on genetic associations for drug responsiveness and disease susceptibility with the potential to improve health care. Much of these data are presently characterized as exploratory (non‐validated or hypothesis‐generating). There is, however, a trend for research participants to be (...) permitted access to their personal data if they so choose. Researchers, sponsors, patient advocacy groups, ethics committees and regulatory authorities are consequently confronting the issue of whether, and how, study participants might receive their individual results. Noted international ethico‐legal guidelines and public policy positions in Europe and the United States are reviewed for background. The authors offer ‘Points‐to‐Consider’ regarding returning research results in the context of drug development trials based on their knowledge and experience. These considerations include: the clinical relevance of data, laboratory qualifications, informed consent procedures, confidentiality of medical information and the competency of persons providing results to participants. The discussion is framed as a benefit‐to‐risk assessment to balance the potential positive versus negative consequences to participants, while maintaining the integrity and feasibility of conducting genetic research studies. (shrink)

This project continues our interdisciplinary research into computational and cognitive aspects of narrative comprehension. Our ultimate goal is the development of a computational theory of how humans understand narrative texts. The theory will be informed by joint research from the viewpoints of linguistics, cognitive psychology, the study of language acquisition, literary theory, geography, philosophy, and artificial intelligence. The linguists, literary theorists, and geographers in our group are developing theories of narrative language and spatial understanding that are being tested by the (...) cognitive psychologists and language researchers in our group, and a computational model of a reader of narrative text is being developed by the AI researchers, based in part on these theories and results and in part on research on knowledge representation and reasoning. This proposal describes the knowledge-representation and natural-language-processing issues involved in the computational implementation of the theory; discusses a contrast between communicative and narrative uses of language and of the relation of the narrative text to the story world it describes; investigates linguistic, literary, and hermeneutic dimensions of our research; presents a computational investigation of subjective sentences and reference in narrative; studies children’s acquisition of the ability to take third-person perspective in their own storytelling; describes the psychological validation of various linguistic devices; and examines how readers develop an understanding of the geographical space of a story. This report is a longer version of a project description submitted to NSF. This document, produced in May 2007, is a L ATEX version of Technical Report 89-07 (Buffalo: SUNY Buffalo Department of Computer Science, August 1989), with slightly.. (shrink)

Starting in early childhood, children are socialized to be honest. However, they are also expected to avoid telling the truth in sensitive situations if doing so could be seen as inappropriate or impolite. Across two studies (total N = 358), the reasoning of 3‐ to 5‐year‐old children in such a scenario was investigated by manipulating whether the information in question would be helpful to the recipient. The studies used a reverse rouge paradigm, in which a confederate with a highly salient (...) red mark on her nose asked children whether she looked okay prior to having her picture taken. In Study 1, children tended to tell the truth only if they were able to observe that the mark was temporary and the confederate did not know it was there. In Study 2, children tended to tell the truth only if they were able to observe that the mark could be concealed with makeup. These findings show that for children as young as age 3, decisions about whether to tell the truth are influenced by the likelihood that the information would be helpful to the recipient. (shrink)

Rapid Ethical Assessment (REA) is a form of rapid ethnographic assessment conducted at the beginning of research project to guide the consent process with the objective of reconciling universal ethical guidance with specific research contexts. The current study is conducted to assess the perceived relevance of introducing REA as a mainstream tool in Ethiopia.

Confidentiality is a cornerstone of the physician-patient relationship. Breaches of confidentiality in the context of genetic testing are of particular concern for a number of reasons. First, genetic testing reveals information not only about a particular patient, but also about his or her family members. Second,genetic testing can label healthy people as “at risk,” subjecting them to possible stigmatization or discrimination by third parties. Third, as genetic testing becomes more widespread and is incorporated into primary care, breaches of confidentiality might (...) inadvertently occur more frequently because primary care providers may not be trained to understand the uniqueness of genetic information. Until now, genetic services have been provided primarily by medical geneticists and genetic counselors. However, with the proliferation of new genetic presymptomatic and carrier tests, primary care physicians are going to become increasingly involved in genetic testing. Currently, little is known about physicians’ attitudes toward disclosure of confidential genetic information to third parties. (shrink)

Confidentiality is a cornerstone of the physician-patient relationship. Breaches of confidentiality in the context of genetic testing are of particular concern for a number of reasons. First, genetic testing reveals information not only about a particular patient, but also about his or her family members. Second,genetic testing can label healthy people as “at risk,” subjecting them to possible stigmatization or discrimination by third parties. Third, as genetic testing becomes more widespread and is incorporated into primary care, breaches of confidentiality might (...) inadvertently occur more frequently because primary care providers may not be trained to understand the uniqueness of genetic information. Until now, genetic services have been provided primarily by medical geneticists and genetic counselors. However, with the proliferation of new genetic presymptomatic and carrier tests, primary care physicians are going to become increasingly involved in genetic testing. Currently, little is known about physicians’ attitudes toward disclosure of confidential genetic information to third parties. (shrink)

Background Currently there is increasing recognition of the need for research in developing countries where disease burden is high. Understanding the role of local factors is important for undertaking ethical research in developing countries. We explored factors relating to information and communication during the process of informed consent, and the approach that should be followed for gaining consent. The study was conducted prior to a family-based genetic study among people with podoconiosis (non-filarial elephantiasis) in southern Ethiopia. Methodology/Principal Findings We adapted (...) a method of rapid assessment validated in The Gambia. The methodology was entirely qualitative, involving focus-group discussions and in-depth interviews. Discussions were conducted with podoconiosis patients and non-patients in the community, fieldworkers, researchers, staff of the local non-governmental organisation (NGO) working on prevention and treatment of podoconiosis, and community leaders. We found that the extent of use of everyday language, the degree to which expectations of potential participants were addressed, and the techniques of presentation of information had considerable impact on comprehension of information provided about research. Approaching podoconiosis patients via locally trusted individuals and preceding individual consent with community sensitization were considered the optimal means of communication. Prevailing poverty among podoconiosis patients, the absence of alternative treatment facilities, and participants' trust in the local NGO were identified as potential barriers for obtaining genuine informed consent. Conclusions Researchers should evaluate the effectiveness of consent processes in providing appropriate information in a comprehensible manner and in supporting voluntary decision-making on a study-by-study basis. (shrink)

Delivering high quality genomics-informed care to patients requires accurate test results whose clinical implications are understood. While other actors, including state agencies, professional organizations, and clinicians, are involved, this article focuses on the extent to which the federal agencies that play the most prominent roles — the Centers for Medicare and Medicaid Services enforcing CLIA and the FDA — effectively ensure that these elements are met and concludes by suggesting possible ways to improve their oversight of genomic testing.

Research shows that the physician’s personal attributes and social characteristics have a strong association with their end-of-life decision making. Despite efforts to increase patient, family and surrogate input into EOL decision making, research shows the physician’s input to be dominant. Our research finds that physician’s social values, independent of religiosity, have a significant association with physician’s tendency to withhold or withdraw life sustaining, EOL treatments. It is suggested that physicians employ personal social values in their EOL medical coping, because they (...) have to cope with existential dilemmas posed by the mystery of death, and left unresolved by medical decision making mechanisms such as advanced directives and hospital ethics committees. (shrink)

A goal of living as well as possible is central to practice and research with young adults living with home mechanical ventilation (HMV). Significant effort has been put into conceptualizing and measuring the quality of life (QOL) as a proxy for living well. Yet, dominant understandings of QOL have been influenced by normative, ableist, and biomedical discourses about what constitutes a good life that, when applied in practice and systems with those living with HMV, can contribute to exclusion and constrain (...) opportunities to live well. Inquiry into what certain understandings of living well can do is critical to opening up possibilities to reimagine living well with HMV. This paper draws on findings from a critical narrative inquiry that explored the experiences of five young adults (ages 18–40 years) living with HMV. Data were co‐constructed virtually through an initial interview and photo‐elicitation using participant‐generated photographs. A critical narrative analysis of participants' stories made visible the ideological effects of ableist, biomedical, and individualist discourses and how the young adults reproduced and resisted these dominant discourses. Their stories further opened up possibilities for nurses and other healthcare providers to see living well and QOL differently. (shrink)

Volume 20, Issue 7, July 2020, Page 150-152.

IntroductionThe value of a short life characterized by disability has been hotly debated in the literature on fetal and neonatal outcomes.MethodsWe conducted a scoping review to summarize the available empirical literature on the experiences of families in the context of trisomy 13 and 18 (T13/18) with subsequent thematic analysis of the 17 included articles.FindingsThemes constructed include (1) Pride as Resistance, (2) Negotiating Normalcy and (3) The Significance of Time.InterpretationOur thematic analysis was guided by the moral experience framework conceived by Hunt (...) and Carnevale (2011) in association with the VOICE (Views On Interdisciplinary Childhood Ethics) collaborative research group.RelevanceThis article will be of interest and value to healthcare professionals and bioethicists who support families navigating the medically and ethically complex landscape of T13/18. (shrink)

Pragmatic clinical trials offer important benefits, such as generating evidence that is suited to inform real-world health care decisions and increasing research efficiency. However, PCTs also present ethical challenges. One such challenge involves the management of information that emerges in a PCT that is unrelated to the primary research question, yet may have implications for the individual patients, clinicians, or health care systems from whom or within which research data were collected. We term these findings as?pragmatic clinical trial collateral findings,? (...) or?PCT-CFs?. In this article, we explore the ethical considerations associated with the identification, assessment, and management of PCT-CFs, and how these considerations may vary based upon the attributes of a specific PCT. Our purpose is to map the terrain of PCT-CFs to serve as a foundation for future scholarship as well as policy-making and to facilitate careful deliberation about actual cases as they occur in practice. (shrink)

Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of (...) three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks. (shrink)

BackgroundThe consent process for a genetic study is challenging when the research is conducted in a group stigmatized because of beliefs that the disease is familial. Podoconiosis, also known as 'mossy foot', is an example of such a disease. It is a condition resulting in swelling of the lower legs among people exposed to red clay soil. It is a very stigmatizing problem in endemic areas of Ethiopia because of the widely held opinion that the disease runs in families and (...) is untreatable. The aim of this study was to explore the impact of social stigma on the process of obtaining consent for a study on the genetics of podoconiosis in Southern Ethiopia.MethodsWe adapted a rapid assessment tool validated in The Gambia. The methodology was qualitative involving focus-group discussions (n = 4) and in-depth interviews (n = 25) with community members, fieldworkers, researchers and staff of the Mossy Foot Treatment and Prevention Association (MFTPA) working on prevention and treatment of podoconiosis.ResultsWe found that patients were afraid of participation in a genetic study for fear the study might aggravate stigmatization by publicizing the familial nature of the disease. The MFTPA was also concerned that discussion about the familial nature of podoconiosis would disappoint patients and would threaten the trust they have in the organization. In addition, participants of the rapid assessment stressed that the genetic study should be approved at family level before prospective participants are approached for consent. Based on this feedback, we developed and implemented a consent process involving community consensus and education of fieldworkers, community members and health workers. In addition, we utilized the experience and established trust of the MFTPA to diminish the perceived risk.ConclusionThe study showed that the consent process developed based on issues highlighted in the rapid assessment facilitated recruitment of participants and increased their confidence that the genetic research would not fuel stigma. Therefore, investigators must seek to assess and address risks of research from prospective participants' perspectives. This involves understanding the issues in the society, the culture, community dialogues and developing a consent process that takes all these into consideration. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Sexual Difference as Model: An Ethics for the Global FutureGail SchwabIn Éthique de la différence sexuelle (1984), Luce Irigaray targeted language and love—for her, inseparable from each other—as the two areas of focus for the elaboration of an ethics of sexual difference. The heterosexual couple seemed to have taken on a new, and somehow inappropriately central, importance in Irigaray’s thought in the early eighties; however, the projected mutations in (...) language and love theorized in Éthique did not exclusively concern the heterosexual relationship, even though many readers of Irigaray expressed just such reservations about the book. Éthique foregrounded the couple in the love relationship in order to rethink the philosophical basis of ethics in general, to develop new paradigms, beyond or outside of Western totalizing phallo- and logocentrism, for human relations—not only relations between women and men, but also, and perhaps even more importantly, relations among women and relations among men. Irigaray carried on this project in subsequent works, in Sexes et parentés (1987), which as the title explicitly indicates, opens up the ethical debate to familial and genealogical issues and broadens her focus to include children and the ethical basis of their relationships to parents and more generally to adults of both sexes, and in Sexes et genres à travers les langues (1990), a cross-cultural report on her empirical studies of gender differences in language usage, which sheds new light on the linguistic and communicational issues she had presented in Éthique and even before, in several seldom read and even more rarely analyzed works of the late seventies and early eighties. J’aime à toi (I Love to You) (1992) returns specifically to the more traditionally philosophical approach to the problems of language and love and their intertwining, and carries on the work projected in Éthique, but it goes much further in both the theoretical and the practical development of the concept of sexual difference as the foundation for a new ethics, a new culture of universal validity. J’aime à toi can be read as a follow-up to Éthique and as a founding text for the construction of an ethics of difference modeled on sexual difference, an ethics for the future of humanity in all of its diversity.Western Feminism and the Global FutureIrigaray is very much aware of the limits of the various Western political and academic feminisms, of the need to broaden their scope, both horizontally across cultures and vertically within specific cultures, before they can serve as the basis for a new ethics. Irigaray expresses the concern that Western feminists, rather than represent the exploited women of the world, may exploit them ideologically for their own personal or political purposes, at the risk of preventing them from coming to a feminism of their own making, appropriate to their own cultures and historical moments. “Certain women do implement power strategies—including the power of the media—but not solely for the benefit of the exploited women they use as an alibi. They thus run the risk of clouding the issues and [End Page 76] preventing their consciousness from being raised” [Irigaray, J’aime à toi 15]. 1 Irigaray calls this “egological” feminism (Dare I invent a new term here? Now we have “egofeminists” as well as “ecofeminists”...) and demonstrates its totally undemocratic orientation, despite its representative claims.Certain militants..., practicing direct democracy or an egological feminism, based on their own real, or imagined, needs and desires, rather than on those of all women, leave women subject to existing legislation. Indifferent to the rights necessary for all women—including the little girls of the present and the future, and the women of other cultures—they make decisions that perpetuate, and even aggravate, through unnecessary misunderstandings, the injustices done the female gender.[J’aime à toi 13]As a feminist, in general, it always pains me to read criticisms of feminism, even cogent and theoretically valid criticisms, and I am even now painfully aware of the political dangers of criticizing feminism myself in a public forum such as this one. However, if I have managed to learn anything from the works of Western feminists of color and from Third World feminists, it is... (shrink)

The informed consent process for genetic testing does not commonly address preferences regarding disclosure of results in the event of the patient's death. Adults being tested for familial colorectal cancer were asked whether they want their exome sequencing results disclosed to another person in the event of their death prior to receiving the results. Of 78 participants, 92% designated an individual and 8% declined to. Further research will help refine practices for informed consent.

Representing a new generation of theorists reaffirming the radical dimensions of art, Gail Day launches a bold critique of late twentieth-century art theory and its often reductive analysis of cultural objects. Exploring core debates in discourses on art, from the New Left to theories of "critical postmodernism" and beyond, Day counters the belief that recent tendencies in art fail to be adequately critical. She also challenges the political inertia that results from these conclusions. Day organizes her defense around critics (...) who have engaged substantively with emancipatory thought and social process: T. J. Clark, Manfredo Tafuri, Fredric Jameson, Benjamin H. D. Buchloh, and Hal Foster, among others. She maps the tension between radical dialectics and left nihilism and assesses the interpretation and internalization of negation in art theory. Chapters confront the claim that exchange and equivalence have subsumed the use value of cultural objects—and with it critical distance— and interrogate the proposition of completed nihilism and the metropolis put forward in the politics of Italian operaismo. Day covers the debates on symbol and allegory waged within the context of 1980s art and their relation to the writings of Walter Benjamin and Paul de Man. She also examines common conceptions of mediation, totality, negation, and the politics of anticipation. A necessary unsettling of received wisdoms, _Dialectical Passions_ recasts emancipatory reflection in aesthetics, art, and architecture. (shrink)