Restrictive visitation policies produce inequities in healthcare that have meaningful consequences for patients’ health and well-being. There is a surplus of existing literature exploring the consequences of reduced visitation in the setting of pediatric patients lacking decision-making capacity, but relatively little scholarship addressing visitation restriction for less vulnerable adults possessing capacity. Here, we present the case of a patient who suffered serious complications of childbirth, during the delivery of her healthy newborn, leading to prolonged hospitalization. During her treatment course, she (...) was subsequently denied visitation with her newborn, who had been discharged from the hospital, and this had detrimental effects on her recovery. Hospital policies restricting visitation during the COVID-19 pandemic were intended to reduce the risk of disease exposure for both patients and staff, despite conflicting evidence demonstrating this benefit. In contrast, they often have negative effects on patient stress, mood, and physical recovery. The sequelae of this US-based case study argue the need for more holistic hospital visitation policies, placing a specific lens on adult patients receiving a visitation from their newborn children. (shrink)

As the coronavirus pandemic continues apace in the United States, the dizzying amount of data being generated, analyzed and consumed about the virus has led to calls to proclaim this the first ‘data-driven pandemic’. But at the same time, it seems that this plethora of data has not meant a better grasp on the reality of the pandemic and its effects. Even as we have the potential to digitally track and trace nearly every single individual who has contracted the virus, (...) we have no idea exactly how many people have had the virus, been hospitalized, or died because of it, largely due to a confluence of factors, particularly active obfuscation and mismanagement by public authorities and misinformation spread through social media and right-wing media channels. But beyond these dynamics, there also lies the less nefarious ways that the everyday, subjective practices of data collection, analysis and visualization have the potential to themselves produce these very same dynamics where data is at once valorized and ignored, preeminent and completely useless. That is, the pandemic has revealed only the general inadequacy of our data infrastructures and assemblages to solving pressing social issues, but also the more general shift towards a ‘post-truth’ disposition in contemporary social life. But, as this paper argues, it would be a mistake to see the centrality of data as being somehow the opposite from the larger post-truth apparatus, as the two are instead fundamentally intertwined and co-produced. (shrink)

Nurses practicing in forensic mental health hospital settings work with patients involved in the criminal justice system who are also diagnosed with psychiatric illnesses. Nurses work towards collaborative and therapeutic relationships with patients with an eventual goal of recovery and successful discharge to the community. Though the majority of patients in these settings in Canada are diagnosed with psychotic disorders, a smaller proportion may be diagnosed with antisocial personality disorder (ASPD), a patient population often described as ‘difficult’ or even (...) ‘untreatable’ by nurses. In this paper, we offer a critical examination of forensic mental health nursing practice with this patient population, based upon a qualitative study, using discourse analysis methodology of nursing practices in a Canadian high security forensic hospital setting. Nurse participants described those challenges faced and strategies employed when working with patients diagnosed with ASPD, and who had been found not criminally responsible on account of mental disorder (NCRMD). Michel Foucault's poststructuralist concept of disciplinary power provides the theoretical lens in which both patient behaviours deemed ‘difficult’ and nursing practices are interrogated. Our findings indicate that the secure forensic mental health hospital environment represents a highly disciplinary space, wherein constant observation of patients occurs, and attempts are made to ‘normalize’ behaviours deemed abnormal. Patients diagnosed with ASPD regularly violate hospital rules and behavioural expectations, leading to frustration amongst nursing staff. Tensions existed in proposed strategies for working with these patients between strict adherence to unit rules and the disciplinary order, and a willingness to loosen these rules in attempts to improve nurse–patient relationships. The nursing implications of these opposing strategies are critically examined, with proposals for practices that exist both within and outside the disciplinary order are offered. (shrink)

Over the last two decades the practice of applied philosophy has undergone re­surgence. It is now common for philosophers to sit on ethics committees in hospitals, or to provide ethical advice to businesses, and many universities and colleges now offer courses in practical philosophy. Despite this, practical philosophy is subject to increasing criticism, with persons charging that (1) it is philosophically shallow, and (2) it has little to offer persons grappling with concrete ethical problems, either because (a) its techniques or (...) too removed from such problems, or (b) because ethical theory is too abstract. In this paper I develop responses to these criticisms, and offer suggestions as to how practical philosophy should be developed. (shrink)

Neil Sinhababu :89–98, 2017) has recently argued against the fine-tuning argument for God. They claim that the question of the universe’s fine-tuning ought not be ‘why is the universe so hospitable to life?’ but rather ‘why is the universe so hospitable to morally valuable minds?’ and that, moreover, the universe isn’t so hospitable. For it is metaphysically possible that psychophysical laws be substantially more permissive than they in fact are, allowing for the realisation of morally valuable consciousness by exceptionally simple (...) physical states and systems, rather than the complex states of brains. I reply that Sinhababu’s argument rests upon unsupported claims and that we have reason to doubt that an omnibenevolent God would make the psychophysical laws more permissive than they in fact are. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Difficult, Difficult, Lemon, DifficultMaggie TaylorI like to joke that my husband is a lemon—he suffers from manufacturing defects that prevent his body from functioning as intended. Illnesses other 40-somethings recover from quickly are things that land him in the hospital for weeks on end. So, it was no surprise last year that an epileptic seizure led to aspiration pneumonia, admission to the lCU, intubation, multisystem organ failure, and (...) a Helivac ride to a regional hospital for a higher level of care. I was told that his odds of survival were about fifty-fifty. At the time, I was training as a clinical ethics fellow, still relatively inexperienced but savvy enough to guess the true likelihood was probably lower. Doctors don’t usually like telling brutal truths to families.But the moral complexities of his treatment did not arise when he was on the verge of death. They came days later when he was getting better. He’d survived a major surgery, come off pressors, recovered from an acute kidney injury, did well on spontaneous breathing trials (SBTs), and tolerated sedation weaning. Ironically, this was the hardest part of the hospitalization for me. Some people tolerate endotracheal tubes. Others don’t. My husband is in the latter group. He’d even self-extubated on a prior hospitalization. This time, he was too weak to lift his arms. Instead of pulling at the tube taped to his face, he stared up at me with wild eyes that said I don’t know what’s happening but I hate it; make it stop.As his discomfort became more apparent, I pressed the intensivist, Dr. Roja1, about extubating. “He’s alert, following commands, and hit the benchmarks on his vent settings.”Dr. Roja responded by saying she didn’t feel my husband was ready. They would continue conducting SBTs and reevaluate the next day.She said the same thing the next day.And the next day. Then she suggested a trach evaluation. I rejected Dr. Roja’s proposed compromise. Forcefully.It wasn’t just that I had trouble seeing my husband in this state of confusion and discomfort, although I did. I also knew continued vent dependence was something he would not accept. Over the course of our relationship, we’ve talked a lot about what interventions my husband would tolerate under various circumstances. This makes sense, given my profession and his health problems. He doesn’t want to live no matter the costs, but only if he can do so without being a burden on those he loves or dependent on machinery long-term—which, for him, means a few weeks.This is what I told Dr. Roja. At least, this is what I think I told her. It’s doubtful I stated my reasoning [End Page 28] half that clearly, given my emotional, physical, and cognitive state. It had been two weeks since my husband was admitted, and I was depleted. I was living in a hotel across from the hospital, wasn’t eating, and had fallen back into the vice of smoking cigarettes. Exhaustion and stress had made me combative: I had to defend my husband against this doctor who refused to do the right thing and take the tube out.In what felt like a last-ditch effort to get me off her back, Dr. Roja suggested an ethics consult. It was embarrassing that the intensivist was the one to suggest ethics involvement. Consumed as I was by my job as my husband’s advocate, I had forgotten my actual job.The team was able to put together a family meeting within hours. Beforehand, the ethicist came to my husband’s room and introduced herself to me and my mother.“I work in ethics too, as a clinical ethics fellow,” I said.She responded: “Oh.”That was all. Not even a word, but a sound. I don’t know what response I wanted, but that wasn’t it. This made me suspicious of the process.My mother and I joined the ethicist, Dr. Roja, and a palliative care physician in the family room. Dr. Roja led with a summary of my husband’s clinical condition... (shrink)

Patients with end-stage renal disease experience significant mortality and morbidity, including cognitive decline. Advance care planning has been emphasized as a responsibility and priority of physicians caring for patients with chronic kidney disease in order to align with patient values before decision-making capacity is lost and to avoid suffering. This emphasis has proven ineffective, as illustrated in the case of a patient treated in our hospital. Is this ineffectiveness a consequence of failure in the courtroom or the clinic? Through (...) our own experience we affirm what has been written before: that legal precedent favors intensive treatment in virtually all cases without ‘clear and convincing evidence’ of a patient’s previously declared wishes to the contrary. Equally clear is that more than 20 years of support in the clinical literature suggesting advance care planning early in the course of disease can address challenges in the legal system for those lacking capacity. However, many physicians fail t... (shrink)

Many health care organizations made public commitments to become antiracist in the wake of George Floyd's murder. These actions raise questions about the appropriateness of health care's engagement in racial justice and social justice movements generally. We argue that health care organizations can be usefully thought of as having two roles: a functional role to care for the sick and a meta‐role as an organizational citizen. Fulfilling the role of citizen may require participating in the pursuit of social justice, including (...) efforts to achieve racial equity. The demands of these two roles will need to be balanced, but the role of organizational citizen has been largely ignored and merits serious attention. (shrink)

Aims: To assess patient receipt of written information. To ensure patients understand the written information about a resuscitation policy and to determine whether they disapproved of or had concerns about the policy. Methods: All admissions to four wards of the hospital were approached for an interview. A set questionnaire was asked by one of 2 interviewers. Results: 72% of 572 admissions were interviewed. Refusal accounted for only 2 of the people not interviewed. 11% were unable to advocate for themselves (...) by reason of mental incompetence, inability to communicate or impairment secondary to their illness. Of the 401 interviewed only 49% recalled receiving the patient information booklet. Few patients (17%) recalled reading the information in the patient information booklet. They were all then given the paragraph about the hospital’s resuscitation policy. 352 were asked their understanding and only 61% demonstrated that they understood the paragraph. 91% of all 401 patients approved of the hospital having the option of DNR orders. 31% of people however had concerns related to DNR orders. These are discussed. Conclusions: Many acutely unwell patients are unable to advocate for themselves. Written information is a poor method of communicating with patients. There was limited receipt of the information and many misunderstood the paragraph about the hospitals resuscitation policy. There was a wide range of patient thoughts and concerns expressed. (shrink)

This article examines the current use of Jesus language in a convenience sample of twenty-five mission statements from Roman Catholic hospitals and health care systems in the United States. Only twelve statements specifically use the words “Jesus” or “Christ” in their mission statements. The author advocates the use of explicit Jesus language and modeling. While the witness of Jesus in the Gospel healing narratives is not the only corrective to current abuses in the health care delivery system, it is foundational (...) to the integrity of Roman Catholic health care identity and mission. An analysis of Gospel healing narratives is used to illustrate the prophetic dimension of Jesus' wisdom, word, and witness. (shrink)

AbstractMichel Foucault is well known as a theorist of power who provided forceful critiques of institutions of confinement such as the psychiatric asylum and the prison. Although the invention of factory farms and industrial slaughterhouses, like prisons and psychiatric hospitals, can be considered emblematic moments in a history of modernity, and although the modern farm is an institution of confinement comparable to the prison, Foucault never addressed these institutions, the politics of animal agriculture, or power relationships between humans and other (...) animals more generally. The few times that Foucault discussed animality or human–animal relations, animals and animality remained metaphors for humans and human experiences. Despite Foucault's failure to analyze human–nonhuman animal relations, a significant body of Critical Animal Studies literature has mobilized Foucault's work over the last decade. In particular, a number of scholars have taken up Foucault's writings to consider how relations between humans and nonhuman animals in agriculture might be conceptualized as instances of sovereign power, biopower, disciplinary power, and pastoral power, as well as why we may not think that these are power relations at all. This essay provides an overview of Foucault's accounts of power and of the Foucauldian scholarship that applies these accounts to human–nonhuman animal relations in animal agriculture. (shrink)

The papers in this special thematic issue of HEC Forum critically and carefully explore key issues at the intersection of patient privacy and commodification. For example, should hospitals be required to secure a person’s consent to any possible uses to which his discarded body parts might be put after his treatment or should it only be concerned with securing his informed consent to his treatment? Should a hospital be required to raise the possibility of the commodification of such body (...) parts, or should it only be required to address this issue if the patient asks about it? Should persons be paid to engage in medical research, or should they only be compensated for their time, on the grounds, perhaps, that such payment would be coercive or exploitative, for it might move some persons to agree to participate in research who otherwise would not have done? This number of HEC Forum illustrates the widespread implications of these issues upon which healthcare ethics committees are called to deliberate. (shrink)

Policies promoted and adopted for allocating ventilators during the COVID-19 pandemic have often prioritised healthcare workers or other essential workers. While the need for such policies has so far been largely averted, renewed stress on health systems from continuing surges, as well as the experience of allocating another scarce resource—vaccination—counsel revisiting the justifications for such prioritisation. Prioritising healthcare workers may have intuitive appeal, but the ethical justifications for doing so and the potential harms that could follow require careful analysis. Ethical (...) justifications commonly offered for healthcare worker prioritisation for ventilators rest on two social value criteria: instrumental value, also known as the ‘multiplier effect’, which may preserve the ability of healthcare workers to help others, and reciprocity, which rewards past usefulness or sacrifice. We argue that these justifications are insufficient to over-ride the common moral commitment to value each person’s life equally. Institutional policies prioritising healthcare workers over other patients also violate other ethical norms of the healthcare professions, including the commitment to put patients first. Furthermore, policy decisions to prioritise healthcare workers for ventilators could engender or deepen existing distrust of the clinicians, hospitals and health systems where those policies exist, even if they are never invoked. (shrink)

It is no secret that there are problems within hospitals and other healthcare settings across the United States that have been simmering for some time. With the emergence of the deadly SARs-CoV-2 v...

In lieu of an abstract, here is a brief excerpt of the content:Response to Chloë TaylorLadelle McWhorterAs Chloë Taylor notes, Racism and Sexual Oppression in Anglo-America puts forth a genealogy of race and racism. It also contains fragments of genealogies of intelligence, disability, family values, and a few other concepts and practices that were hugely influential in the twentieth century and have been since. In addition, it presents a certain conception and experience of abnormality and of sexuality in relation (...) to all of the above. But the book does not present a theory of racism or of sexual oppression or of both together. There are important differences between theorizing and the practice of genealogy, at least in the way that I understand the two, and that difference makes a difference in the book’s structure and aims.When I began my graduate education in the early 1980s, feminists were producing compelling critiques of regimes of knowledge and techniques of knowledge production that claimed legitimacy through detachment, dispassionate observation, and objectivity.1 Theory was a not infrequent target of those feminist critiques. Theory (from the Greek theoria, as Heidegger reminds us) is about seeing (not, for example, touching or feeling), and theorizing is typically about representing with accuracy and thoroughness what non-theorists see only incompletely, if at all. Theory, therefore, seeks to correct distortions as it captures reality under concepts.2 Theory also aims to be unitary and exclusive. And theories compete with each other; no matter how many theories there are, only one can possibly be true.By contrast, genealogy is not detached or dispassionate; on the contrary, one takes up genealogy precisely because one feels a need to change something—including something in or about oneself. One takes up genealogy, Michel Foucault maintains, in order to “free thought from what it silently [End Page 216] thinks,” to “enable it to think differently,”3 to get free of oneself as one has been constituted in a certain milieu. Genealogy is concerned with accuracy of representation, therefore, to the extent that detail, facts, and logical plausibility make a narrative more compelling, more moving, more potent—to that extent, and no further; it does not employ scholarly observation and insight to get at “the truth.” A good genealogy constructs a new way of seeing and experiencing that may well disturb a given regime of truth and may make possible the generation of new truths or perhaps new habits of thought and action, but it does not purport to be final or exclusive. It problematizes habitual practices and ways of seeing and, thus, it opens toward indefinite possibilities. My book is genealogical; it promotes no theories. I emphasize this, because I want to insist on the book’s hospitability to the extension of its analyses beyond its covers and to its own (self-)overcoming.Racism and Sexual Oppression in Anglo-America presents some genealogies, then, but it is not only a collection of genealogies. It is explicitly framed by a set of contemporary political and ethical contingencies, some of which it identifies as problems, and it considers what to do in response to them. Its genealogies are undertaken and constructed in the context of grappling with those questions, a featured one of which is this: Can we find enough common ground to make common cause between antiracism and anti-heterosexism activists?In the course of tracing a genealogy of twentieth-century racism, I found quite a bit of common ground between racial minorities and nonhetero-sexual people in the United States. So, in addition to my genealogies, I offered some (admittedly perhaps heavy-handed) advice to antiracism and anti-heterosexism activists, namely: Not only is there ground for common cause, but you ignore this ground at your peril, because there is not a lot of other ground for you to stand on; if you do not acknowledge this common history and the strong connections among the forces that oppress your group and those that oppress these other groups, you will have to deny much of your own history and obscure many of the sources of your own oppression. I did not issue the same advice to disability activists or environmentalists, although they might do well to consider it too. I singled... (shrink)

Grace and Freedom in a Secular Age offers a concise exposition of key ideas - contingency, otherness, freedom, vulnerability and mutuality - that inform the work of the Canadian philosopher Charles Taylor, especially concerning the dynamics of religious belief and religious denial in what he calls a "a secular age." The book integrates discussion of Immanuel Kant and Susan Neiman in particular and seeks to show how Taylor's work can be fruitfully engaged by theologians.

Contemporary conversations about religion and culture are framed by two reductive definitions of secularity. In one, multiple faiths and nonfaiths coexist free from a dominant belief in God. In the other, we deny the sacred altogether and exclude religion from rational thought and behavior. But is there a third way for those who wish to rediscover the sacred in a skeptical society? What kind of faith, if any, can be proclaimed after the ravages of the Holocaust and the many religion-based (...) terrors since? Richard Kearney explores these questions with a host of philosophers known for their inclusive, forward-thinking work on the intersection of secularism, politics, and religion. An interreligious dialogue that refuses to paper over religious difference, these conversations locate the sacred within secular society and affirm a positive role for religion in human reflection and action. Drawing on his own philosophical formulations, literary analysis, and personal interreligious experiences, Kearney develops through these engagements a basic gesture of hospitality for approaching the question of God. His work facilitates a fresh encounter with our best-known voices in continental philosophy and their views on issues of importance to all spiritually minded individuals and skeptics: how to reconcile God's goodness with human evil, how to believe in both God and natural science, how to talk about God without indulging in fundamentalist rhetoric, and how to balance God's sovereignty with God's love. (shrink)

This narrative symposium examines the relationship of bioethics practice to personal experiences of illness. A call for stories was developed by Tod Chambers, the symposium editor, and editorial staff and was sent to several commonly used bioethics listservs and posted on the Narrative Inquiry in Bioethics website. The call asked authors to relate a personal story of being ill or caring for a person who is ill, and to describe how this affected how they think about bioethical questions and the (...) practice of medicine. Eighteen individuals were invited to submit full stories based on review of their proposals. Twelve stories are published in this symposium, and six supplemental stories are published online only through Project MUSE. Authors explore themes of vulnerability, suffering, communication, voluntariness, cultural barriers, and flaws in local healthcare systems through stories about their own illnesses or about caring for children, partners, parents and grandparents. Commentary articles by Arthur Frank, Bradley Lewis, and Carol Taylor follow the collection of personal narratives. (shrink)

Daniel Taylor and Dawn Goodwin present a case study of the Morecambe Bay Inquiry (MBI), which examined the high rate of maternal and neonatal deaths over a period of 9 years (2004–2013), within the small maternity unit of Furness General Hospital (FGH), one of the three hospitals comprising Morecambe Bay Hospitals Trust.1 They examine this through a conceptual lens, and provide a solution involving changes in medical education. This commentary explores both these elements. First, they use the lens (...) of ‘Normalisation of Deviance’ (NoD) to explain organisational failure. However, other available lenses such as ‘Sociology of Disasters’, ‘Organisational Silence’ and ‘Comfort-seeking Behaviour’ may point to different problems and solutions. More justification for their choice of the lens of NoD would have been useful. Similarly, more justification for their focus on a cluster of five ‘serious untoward incidents’ (SUIs) occurring in 2008 would also have been useful. They suggest that before 2008, the perinatal mortality rate was low, patient satisfaction was high and recent level 2 accreditation of maternity services by the Clinical Negligence Scheme for Trusts all suggested standards of care within the obstetric department were adequate. This stream of positive signals is likely to have contributed towards a genuine belief of safe operation within the maternity unit by staff and board members. However, as they acknowledge, the first problem can be seen in 2004. According to the MBI,2 there were SUIs in the years before and after 2008, but this …. (shrink)

ABSTRACTDiagnostic self‐testing devices are being developed for many illnesses, chronic diseases and infections. These will be used in hospitals, at point‐of‐care facilities and at home. Designed to allow earlier detection of diseases, self‐testing diagnostic devices may improve disease prevention, slow the progression of disease and facilitate better treatment outcomes. These devices have the potential to benefit both the individual and society by enabling individuals to take a more proactive role in the maintenance of their health and by helping society improve (...) health and reduce health costs. However, the full implications of future home‐based diagnostic technology for individuals and society remain unclear due to their novelty.We argue that the development of diagnostic tools, especially for home use, will heighten a number of ethical challenges. This paper will explore some of the ethical implications of home‐based self‐testing diagnostic devices for the autonomous and relational dimensions of the person. This will be facilitated by examining the impact of diagnostic devices for individual autonomy, for the delivery of accurate diagnosis and for the personal significance of the information for the user. The latter will be examined using Charles Taylor's view of personhood and his emphasis on human agency and interpretation.While the ethical issues are not necessarily new, the development of home‐based self‐testing diagnostic devices will make issues regarding autonomy, accuracy of information and personal significance more and more demanding. This will be the case particularly when an individual's autonomous choices come into conflict with the person's relational responsibilities. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Basic Resources in Bioethics*Mary Carrington Coutts (bio)OrganizationsKennedy Institute of Ethics Georgetown University Washington, DC 20057 National Reference Center for Bioethics Literature 800-MED-ETHX or 202-687-3885The Hastings Center 255 Elm Road Briarcliff Manor, NY 10510 914-762-8500Society for Health and Human Values 6728 Old McLean Village Drive McLean, VA 22101 703-556-9222NOTE: There are numerous organizations in the United States and abroad that deal with bioethical issues. For a more comprehensive listing (...) of those organizations, see:American Hospital Association. Directory of Biomedical Ethics Organizations. Chicago: American Hospital Association, 1989.National Reference Center for Bioethics Literature. International Directory of Bioethics Organizations edited by Robert Iosco. Washington, DC: Georgetown University, 1986.Encyclopedia and DictionaryDictionary of Medical Ethics. Edited by A.S. Duncan, G.R. Dunstan, and R.B. Welborn. New rev. ed. New York: Crossroad, 1981. [End Page 75]Encyclopedia of Bioethics. Edited by Warren T. Reich. 4 vols. New York: Macmillan-Free Press, 1978; or 1982 reprint in 2 volumes available to members of the Kennedy Institute of Ethics through the membership office, 202-687-8099.Online DatabaseBioethicsline. Produced by the Kennedy Institute of Ethics for the National Library of Medicine. Searchable through the MEDLARS system. Focuses on questions of ethics and public policy in the fields of health care and biomedical research. Searches available upon request to the National Reference Center for Bioethics Literature. For information on securing a personal access code from the National Library of Medicine, call 800-638-8480.BibliographiesBibliography of Bioethics. Edited by LeRoy Walters and Tamar Joy Kahn. Washington, DC: Kennedy Institute of Ethics, Georgetown University. Issued annually since 1975. Corresponds to the BIOETHICSLINE database. Provides references to resources on ethical and public policy issues in medicine and biomedical research. Includes abstracts; arranged by broad subject categories.Ethics in Nursing. Edited by Terry Pence. 2nd ed. New York: National League for Nursing, 1986. An annotated bibliography of nursing ethics. Includes author and subject indexes.Goldstein, Doris M. Bioethics: A Guide to Information Sources. Detroit: Gale Research, 1982. A selected, annotated bibliography to the literature of bioethics.The Hastings Center's Bibliography of Ethics, Biomedicine and Professional Responsibility. Compiled by the staff of the Hastings Center. Frederick, MD: University Publications of America, 1984.Medical Ethics: An Annotated Bibliography. Edited by Mark Siegler, Peter A. Singer and David L. Schiedermayer. Philadelphia: American College of Physicians, 1988.Current Awareness ServicesNOTE: Several journals have sections where they highlight new publications. See, for example, the "In The Literature" section of the Hastings Center Report, or the "Medicolegal Reference Shelf" section of Law, Medicine and Health Care. Other services include:BioLaw. Edited by James F. Childress and Ruth D. Gaare. Frederick, MD: [End Page 76] University Publications of America, 1983 to present. Annual with bimonthly updates. (Previous title: Bioethics Reporter.) A compendium of articles and legal documents on ethical and legal issues in medicine, health care administration and human experimentation. Includes the text of important legal decisions in the Resources section.New Titles in Bioethics. Edited by Luanda Fitch Huttlinger. Washington, DC: National Reference Center for Bioethics Literature, Kennedy Institute of Ethics, Georgetown University. Published monthly 1975-1989; quarterly 1990—present. List of acquisitions by the National Reference Center for Bioethics Literature. Organized by subject categories. Includes ordering information for difficult-to-find items. Annual cumulation available.Scope Notes Series. Washington, DC: National Reference Center for Bioethics Literature, Kennedy Institute of Ethics, Georgetown University. A series of issue briefs including annotated bibliographies on the following popular bioethical topics:No 1. Dangerousness, September 1982, 5 p.No 2. Living Wills and Durable Powers of Attorney: Advance Directive Legislation and Issues, Revised February 1990, 15 p.No 3. Ethics Committees in Hospitals, Revised June 1989, 12 p.No 4. Diagnosis Related Groups and the Prospective Payment System, June 1984, 11 p.No 5. Baby Fae, January 1985, 19 p.No 6. Surrogate Mothers, Revised January 1988, 12 p.No 7. Withholding or Withdrawing Nutrition or Hydration, Revised September 1988, 12 p.No 8. AIDS: Law, Ethics and Public Policy, April 1988, 12 p.No 9. Bioethics Audiovisuals 1982 to Present, September 1988, 12 p.No 10. Ethical Issues in... (shrink)

Background Meaningfully evaluating the quality of institutional review boards (IRBs) and human research protection programs (HRPPs) is a long-recognized challenge. To be accredited by the Association for the Accreditation of Human Research Protection Programs (AAHRPP), organizations must demonstrate that they measure and improve HRPP “quality, effectiveness, and efficiency” (QEE). We sought to learn how AAHRPP-accredited organizations interpret and satisfy this standard, in order to assess strengths, weaknesses, and gaps in current approaches and to inform recommendations for improvement.Methods We conducted 3 (...) small-group interviews with a total of 19 participant representatives of accredited organizations at the 2019 AAHRPP annual meeting. Participants were eligible if they had familiarity with their organization’s approach to satisfying the relevant QEE standard.Results Participants reported lacking clear definitions for HRPP quality or effectiveness but described various approaches to assessing QEE, typically focused on turnaround time, compliance, and researcher satisfaction. Evaluation of IRB members was described as relatively superficial and information regarding research subject experience was not reported as central to QEE assessment, although participants described several efforts to improve consideration of patient, subject, and community perspectives in IRB review. Participants also described efforts to educate and build relationships with key stakeholders as important features of a high-quality HRPP. While generally satisfied with their approaches, participants expressed concern about resource and time constraints that pushed them to be reactive and automatic about QEE, rather than proactive and critical.Conclusions The relevant AAHRPP accreditation standard may obscure critical gaps in defining and measuring QEE elements. We recommend that AAHRPP: (1) offer a definition of QEE or require accredited organizations to provide their own, to help clarify the rationale and goals behind assessment and improvement efforts, and (2) require accredited organizations to establish QEE objectives and measures focused on participant outcomes and deliberative quality during protocol review. (shrink)

Diagnostic self-testing devices are being developed for many illnesses, chronic diseases and infections. These will be used in hospitals, at point-of-care facilities and at home. Designed to allow earlier detection of diseases, self-testing diagnostic devices may improve disease prevention, slow the progression of disease and facilitate better treatment outcomes. These devices have the potential to benefit both the individual and society by enabling individuals to take a more proactive role in the maintenance of their health and by helping society improve (...) health and reduce health costs. However, the full implications of future home-based diagnostic technology for individuals and society remain unclear due to their novelty. We argue that the development of diagnostic tools, especially for home use, will heighten a number of ethical challenges. This paper will explore some of the ethical implications of home-based self-testing diagnostic devices for the autonomous and relational dimensions of the person. This will be facilitated by examining the impact of diagnostic devices for individual autonomy, for the delivery of accurate diagnosis and for the personal significance of the information for the user. The latter will be examined using Charles Taylor's view of personhood and his emphasis on human agency and interpretation. While the ethical issues are not necessarily new, the development of home-based self-testing diagnostic devices will make issues regarding autonomy, accuracy of information and personal significance more and more demanding. This will be the case particularly when an individual's autonomous choices come into conflict with the person's relational responsibilities. (shrink)

International Indigenous rights coalitions increasingly involve Indigenous and non-Indigenous civil society organizations with diverse backgrounds and interests. As these organizations more frequently interact and partner with one another, what issues are being emphasized in their advocacy efforts? This study utilizes content analysis of 60 Indigenous rights organizations’ websites, as well as interviews of several leaders and staff, to explore whether African Indigenous organizations emphasize different aspects of Indigenous rights in their messaging and advocacy than their other Indigenous and non-Indigenous coalition (...) partners, We find that African Indigenous CSOs discuss issues of unequal treatment more frequently, and issues of self-determination and assimilation less frequently, than their coalition partners. The messaging of Indigenous organizations outside of Africa contained similar themes as that of non-Indigenous CSOs. This raises questions regarding why these messages differ: do African Indigenous groups have distinct concerns and/or are there other reasons for the variance in messaging across international Indigenous rights coalitions. (shrink)

From Italian physician Hieronymus Mercurialis’s contention that the stomach was ‘the king of the belly’, to its promotion by the end of the nineteenth century to the ‘monarch of humanity’ in patent medicine, to Byron Robinson’s discovery of the enteric nervous system in 1907 (a mesh of neural connectivity that led him to dub the gut ‘the second brain’), there has historically been a longstanding awareness of the expansive reach of the gut in the functions of the body. In the (...) nineteenth century, the authority of the gut and its allyship with the brain became a focus for writers thinking about the intersections of illness and ‘modern life’. In medical texts, domestic health manuals, patent medicine, and fiction, the electric telegraph in particular became a way of envisaging what we would now call the ‘gut-brain axis’. The telegraphic metaphor enabled a view of digestion as not simply a mechanical or chemical process, but one that was understood in terms of time, space, and communication. However, such a framework also suggested problems of connection that were common to both systems, emphasising not only the healthy body’s quasi-telegraphic networks but also its vulnerability to delay, disruption, and pathological incoherence. This article will explore the use of telegraphic technologies as proxies for theorising gastric connection and more broadly the concept of ‘gastric time’ as a key conceit for understanding digestion as a process that was and is subject to the idiosyncrasies of bodily rhythms. (shrink)

Technology is no stranger to the city. Cities are planned, built, maintained, governed, demolished, and destroyed by technical means. Yet, the city has yet to receive much attention within the philosophy of technology. This volume addresses this gap, and in doing so contributes to the much-needed discussion on technology-enabled urban futures from the perspective of the philosophy of technology. In this introductory chapter, the larger volume is introduced by reflecting on the rationale and need for such a collection, sketching the (...) main themes analyzed throughout, and providing an overview of the contributions. (shrink)