Community Engagement (CE) has been presented by bio-ethicists and scientists as a straightforward and unequivocal good which can minimize the risks of exploitation and ensure a fair distribution of research benefits in developing countries. By means of ethnographic fieldwork undertaken in Kenya between 2007 and 2009 we explored how CE is understood and enacted in paediatric vaccine trials conducted by the Kenyan Medical Research Institute and the US Centers for Disease Control (KEMRI/CDC). In this paper we focus on the role (...) of paid volunteers who act as an interface between villagers KEMRI/CDC. Village Reporters’ (VRs) position of being both with the community and with KEMRI/CDC is advantageous for the conduct of trials. However it is also problematic in terms of exercising trust, balancing allegiances and representing community views. VRs role is shaped by ambiguities related to their employment status and their dual accountability to researchers and their villages. VRs are understandably careful to stress their commitment to self-less community service since it augments their respectability at community level and opens up opportunities for financial gain and self-development. Simultaneously VRs association with KEMRI/CDC and proximity to trial participants requires them to negotiate implicit and explicit expectations for material and medical assistance in a cultural setting in which much importance is placed on sharing and mutuality. To ensure continuity of productive interactions between VRs, and similar community intermediaries, and researchers, open discussion is needed about the problematic aspects of relational ethics, issues concerning undue influence, power relations and negotiating expectations. (shrink)

Background Planning for the next pandemic influenza outbreak is underway in hospitals across the world. The global SARS experience has taught us that ethical frameworks to guide decision-making may help to reduce collateral damage and increase trust and solidarity within and between health care organisations. Good pandemic planning requires reflection on values because science alone cannot tell us how to prepare for a public health crisis. Discussion In this paper, we present an ethical framework for pandemic influenza planning. (...) The ethical framework was developed with expertise from clinical, organisational and public health ethics and validated through a stakeholder engagement process. The ethical framework includes both substantive and procedural elements for ethical pandemic influenza planning. The incorporation of ethics into pandemic planning can be helped by senior hospital administrators sponsoring its use, by having stakeholders vet the framework, and by designing or identifying decision review processes. We discuss the merits and limits of an applied ethical framework for hospital decision-making, as well as the robustness of the framework. Summary The need for reflection on the ethical issues raised by the spectre of a pandemic influenza outbreak is great. Our efforts to address the normative aspects of pandemic planning in hospitals have generated interest from other hospitals and from the governmental sector. The framework will require re-evaluation and refinement and we hope that this paper will generate feedback on how to make it even more robust. (shrink)

Background: Healthcare providers who are accountable for patient care safety and quality but who are not empowered to actualize them experience moral distress. Interventions to mitigate moral distress in the healthcare organization are needed. Objective: To evaluate the effect on moral distress and clinician empowerment of an established, health-system-wide intervention, Moral Distress Consultation. Methods: A quasi-experimental, mixed methods study using pre/post surveys, structured interviews, and evaluation of consult themes was used. Consults were requested by staff when moral distress was (...) present. The purpose of consultation is to identify the causes of moral distress, barriers to action, and strategies to improve the situation. Intervention participants were those who attended a moral distress consult. Control participants were staff surveyed prior to the consult. Interviews were conducted after the consult with willing participants and unit managers. Moral distress was measured using the Moral Distress Thermometer. Empowerment was measured using the Global Empowerment Scale. Results: Twenty-one consults were conducted. Analysis included 116 intervention and 30 control surveys, and 11 interviews. A small but significant decrease was found among intervention participants, especially intensive care staff. Empowerment was unchanged. Interview themes support the consult service as an effective mode for open discussion of difficult circumstances and an important aspect of a healthy work environment. Conclusions: Moral distress consultation is an organization-wide mechanism for addressing moral distress. Consultation does not resolve moral distress but helps staff identify strategies to improve the situation. Further studies including follow up may elucidate consultation effectiveness. (shrink)

This textbook looks at how different world faiths approach ethics in health and social care, and how their faith informs their practice. Equipping practitioners with the information they need, it will help them to be more reflective regarding spirituality, ethics and their provision of care.

Clinical Ethics, Ahead of Print. The migration of health-care professionals has often produced morally charged discussions among ethicists, politicians, and policy makers in the migrant-sending and migrant-receiving countries because of its devastating effects on the health of those left behind in the countries of origin.This movement of skilled professionals – their decision to leaving their countries of origin in search of better work environments – has created a phenomenon that has been described as brain drain. Although the migration (...) of health workers continue to bring prosperity to millions of people around the world, they have also evoked hopelessness in many more people. Thus, questions of global justice manifest themselves when it comes to the matters of brain drain and the just distribution of health and healthcare professionals. (shrink)

The loss of the federally protected constitutional right to an abortion is a threat to the already tenuous autonomy of pregnant people, and may augur future challenges to their right to refuse unwanted obstetric interventions. Even before Roe’s demise, pregnancy led to constraints on autonomy evidenced by clinician-led legal incursions against patients who refused obstetric interventions. In Dobbs v. Jackson Women’s Health Organization, the Supreme Court found that the right to liberty espoused in the Constitution does not extend to (...) a pregnant person’s right to an abortion. With Roe’s demise, the right to request specific types of care has been vitiated. The same argument underpinning that holding may now become ballast for attacks on the traditionally more robust right, the right to refuse. Here we discuss how the elevation of fetal and embryonic rights may lead to a cascade of medical intrusions and deprivations of liberty against pregnant persons, and offer an argument opposing these improprieties. (shrink)

Jonathan Wolff and Timothy Hinton have criticized a version of liberal egalitarianism, often associated with Ronald Dworkin, for promoting an account of social justice that fails to treat everyone with respect. This paper analyses Wolff’s and Hinton’s critiques, particularly with regard to how notions of self-respect and respect-standing are deployed. The paper argues that the analyses of both Wolff and Hinton display affinities with a dualist approach to social justice. A dualist approach theorizes respect as an aspect of both distributive, (...) socioeconomic injustice and cultural injustice, rather than of the former only, which is typical of liberal egalitarianism. Nancy Fraser is widely associated with such a dualist framework, so her version is used to assess Wolff’s and Hinton’s work. The paper argues that both make use of ideals and commitments from the dualist approach to justice in their respect objection. However, despite their evident sympathy for the notion of cultural injustice, both continue to theorize respect primarily as an aspect of distributive justice. Thus, for cultural justice theorists, Wolff’s and Hinton’s critiques of Dworkinian justice may leave something to be desired. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Philosophy and Literature 25.2 (2001) 314-334 [Access article in PDF] The Epistemology of Cognitive Literary Studies F. Elizabeth Hart I Literary scholars have begun incorporating the insights of cognitive science into literary studies, bringing to bear on questions of literary experience the results of explorations within a wide range of fields that define today's cognitive science. The investigation of the human mind and its reasoning processes encompasses a rich (...) variety of empirical and speculative disciplines, including cognitive psychology, neuroscience, linguistics, evolutionary psychology, developmental psychology, computer science, philosophy, and anthropology. These disciplines are all related to one another by the questions they ask about the brain and mind and the ground they cover in staking out their research agendas; but each also contributes uniquely in terms of individual scope and focus. Literary critics, eavesdropping on this maturing coalition, are now producing critical works that apply cognitive research to a similarly impressive range of literary concerns, with results so far that seem to span the gap between traditional and more contemporary literary critical approaches.All such criticism is dependent on scientific studies of the brain and mind and so accepts axiomatically some degree of epistemological efficacy in scientific empiricism. But this acceptance has not been naive or uncritical and has, in fact, been at times carefully qualified by critics' sensitivity to debate--to the lack of consensus among cognitive scientists, and to the fact that cognitive science is itself in its infancy stage, with its own practitioners often openly tentative about their results and descriptive capabilities. As it happens, such debate, in recent years, has even proven beneficial for literary scholarship since an important [End Page 314] paradigm shift has taken place that now makes some aspects of cognitive science more compatible than ever with the interests of literary studies. This is because, whereas an earlier phase of cognitive science focused its energies on Artificial Intelligence and on theories of language and psychology that supported AI, grounding its theories implicitly in a metaphor of the mind as a computer, today's cognitive scientists tend to concentrate instead on the more organic metaphor of the "embodiment" of mind, that is, of the mind's substantive indebtedness to its bodily, social, and cultural contexts, and on the figurative phenomena of metaphor, metonymy, image schemata, "fields," "frames," other "integrative mental spaces" (as they are called), and the gradient structures and prototypical bases of semantic categories, all of which contribute to recasting human reason into a set of highly imaginative--not logical but figural--processes. 1 For literary theory and criticism, this shift in cognitive science toward "the body in the mind" 2 --tantamount to a wholesale rejection of philosophical rationalism--has given rise to a new kind of interdisciplinary practice, to the potential for a sincere engagement between diverse sciences and even between literature and science that stretches all the bounds of what literary scholars generally mean when they speak of being interdisciplinary (e.g., exchanges with history, art history, anthropology, film studies, sociology).In the discussion that follows, I would like to explore this new interdisciplinarity in literary studies by examining its epistemological implications. I begin with a description of the kinds of criticism now being produced under the rubric of cognitive literary criticism or--to reflect the field's scope more accurately--cognitive and cognitive-evolutionary criticism. This description is not intended as a comprehensive or evaluative survey, since in-depth review articles of extant works are available elsewhere. 3 Rather, I hope to familiarize my readers with the basic orientations of this theory and criticism so that they can grasp the epistemological relations that will become the essay's focus. To lay a further groundwork for this focus, I will review various uses of the term "cognitive" (or "cognitivism") in the scholarship and offer an analysis of its meanings, first in cognitive science and then in literary theory. Building, then, on what "cognitive" might signify for literary studies, I show how a literary approach based on today's cognitive science is uniquely situated among other approaches because of its underlying theory of human... (shrink)

The debate over how to best guide HIV-infected mothers in resource-poor settings on infant feeding is more than two decades old. Globally, breastfeeding is responsible for approximately 300,000 HIV infections per year, while at the same time, UNICEF estimates that not breastfeeding (formula feeding with contaminated water) is responsible for 1.5 million child deaths per year. The largest burden of these infections and deaths occur in Sub-Saharan Africa. Using this region as an example of the burden faced more generally in (...) other resource-poor settings, we contrast the evolution of the clinical standard of care for infant feeding with HIV-infected mothers in high-income countries to the current international clinical guidelines for HIV-infected mothers and infant feeding in resource-poor settings. While the international guidelines of exclusive breastfeeding for a 6-month period seem to offer the least-worst strategy for reducing mother-to-child transmission of HIV during infancy while conferring some immunity through breastfeeding post-6 months, we argue that the impact of the policy on mothers and healthcare workers on the ground is not well understood. The harm reduction approach on the level of health policy translates into a complicated, painful moral dilemma for HIV-positive mothers and those offering them guidance on infant feeding. We argue that the underlying socio-economic disparities that continue to fuel the need for a harm reduction policy on infant feeding and the harm to women and children justify: (1) that higher priority be given to solving the infant feeding dilemma with improved data on safe feeding alternatives, and (2) support of innovative, community-driven solutions that address the particular economic and cultural challenges that continue to result in HIV-transmission to children within these communities. (shrink)

This paper points out that to persons unfamiliar with the context and suffering of dying patients, their loved ones, and last, but by no means least, the health care team can only discuss the very concrete question of euthanasia in an abstract way unaware of the fact that this question must, in the final analysis, be differently addressed in different specific patients and under specific circumstances. This paper poses questions which must be addressed and will rarely find a good (...) answer but at least the best among a series of unpalatable options. It again points out the important and legitimate place that emotions play in decision-making. (shrink)

Decisions concerning use of gene therapy will probably not be made within the privacy of what was once a dyadic doctor–patient relationship. More likely, some overarching guidelines will emerge directing or limiting the practice. Debate and position-taking over the myriad scientific, social, ethical, legal, and political implications of research into and manipulation of the human genome has intensified since the U.S. government officially launched the Human Genome Project in 1988 by appropriating funds to the Department of Energy and the National (...) Institutes of Health for genome research. The discourse this costly research endeavor has generated in the scientific and bioethics literature and even in the popular press outlines a host of issues likely to evoke attempts at line drawing and policymaking. Many of these issues lend themselves easily to the shorthand of dualistic opposition: somatic cell therapy versus germ line therapy or engineering ; correction of defects and disease only versus enhancement of conditions not considered defects or diseases; intervening on the basis of phenotype only versus intervening on the basis of genotype also. (shrink)

This paper discusses the role that the personal history plays in a patient’s perception of his or her own illness in the light of the patient’s own personal history. It demonstrates the regrettable modern tendency to regards the patient as the “bearer of a disease” rather than as a human being with personal values and experiences into which their current illness needs to be integrated. I illustrate my point by an exchange between a student and an “attending” and the “attending” (...) and the patient. It represents only one out of unfortunately many such instances in which the pressures of “managed care” and “efficiency” have made truly knowing the patient as an individual with life experiences and personal values much more difficult. (shrink)

The Covid‐19 pandemic has revealed myriad social, economic, and health inequities that disproportionately burden populations that have been made medically or socially vulnerable. Inspired by state and local governments that declared racism a public health crisis or emergency, the Anti‐Racism in Public Health Act of 2020 reflects a shifting paradigm in which racism is considered a social determinant of health. Indeed, health inequities fundamentally rooted in structural racism have been exacerbated by the Covid‐19 pandemic, which (...) calls for the integration of antiracist praxis to promote ethical public health research processes. This commentary describes ways in which antiracist praxis—which emphasizes empowerment of traditionally marginalized populations—offers strategies to explicitly address power imbalance, stigmatization, and other consequences of structural racism in public health research. (shrink)

Hastings Center Report, Volume 52, Issue S1, Page S3-S11, March‐April 2022.

Hastings Center Report, Volume 52, Issue S1, Page S83-S88, March‐April 2022.

Metaphors used to describe new technologies mediate public understanding of the innovations. Analyzing the linguistic, rhetorical, and affective aspects of these metaphors opens the range of issues available for bioethical scrutiny and increases public accountability. This article shows how such a multidisciplinary approach can be useful by looking at a set of texts about one issue, the use of a newly developed technique for genetic modification, CRISPRcas9.

This essay, published shortly before the 2020 U.S. presidential election (mired in controversy over a potential judicial appointment to the Supreme Court), celebrates Daniel Callahan's prescient book Abortion: Law, Choice and Morality. Nothing could be timelier. Callahan's central question was the “moral and social” struggle requisite for coherent policies and laws regulating abortion. He rejected “one‐value” positions and strove to develop an expansive middle ground. He decried emotion untutored by reason, crude polemics, and bludgeoning: his recipe for a “noxious brew.” (...) Callahan's way of thinking preceded the development of a critical health humanities, the advent of moral foundations theory in psychology, and the philosophical concept of a moral imagination. Each of these inheres in his rigorous approach to the abortion problem. His honesty and humility led to a sea change in his position on abortion. Fifty years later, much can still be learned from Callahan's arguments—about abortion and other bioethics issues—most importantly, in how we address wider social issues in these polarized times. (shrink)

Sunnybrook Health Sciences Centre, Toronto and University of Toronto Ross E. G. Upshur * Sunnybrook Health Sciences Centre, Joint Centre for Bioethics University of Toronto, Toronto * Corresponding author: Ross E. G. Upshur, Primary Care Research Unit, Sunnybrook Health Sciences Centre, 2075 Bayview Avenue, #E-349, Toronto, Ontario, Canada M4N 3M5. Tel.: 416-480-4753; Fax: 416-480-4536; Email: ross.upshur{at}sunnybrook.ca ' + u + '@' + d + ' '//--> Abstract Are restrictive measures and duties to care ethically reasonably acceptable to (...) faith-based organizations? This study describes the perceptions of individually interviewed spiritual leaders of the disease control measures used during the recent SARS outbreak in Toronto. Four central themes were identified: the relationship between religious obligation and civic responsibilities; the role of faith-based organizations in supporting public health restrictive measures; the reciprocal obligations of public health and religious communities during restrictions; and justifiable limits to duties to care. We conclude that, within certain constraints, spiritual leaders find restrictive measures ethically reasonable and that spiritual leaders can play an important role during pandemic and epidemic control planning. Public health officials should therefore include them in the early and ongoing deliberations of the criteria and logistics for implementation during public health emergencies. CiteULike Connotea Del.icio.us What's this? (shrink)

Narrative inquiry in a nursing practicum One approach to creating research‐based nursing education is to think and write narratively about the daily life of a BScN program student and her teacher in diverse settings and over time. Gail, as a nurse‐teacher, and Faith, as a nursing student and now Public Health Nurse, reconstruct their teaching–learning experiences in an integrated practicum in maternal–child health services as a narrative inquiry. After presenting this reconstruction of experience at a conference on (...) maternal scholarship, further inquiry into their experiences shows how narrative inquiry matters to construction of nursing praxis and to life‐long learning as a nurse. Teaching–learning relationships are seen as a template for a student's connections to people experiencing nursing care and to other clinicians. Construction of stories to live by that take into account becoming a nurse, constructing knowledge and enacting caring–healing nursing practices is illuminated through narrative inquiry. (shrink)

Are restrictive measures and duties to care ethically reasonably acceptable to faith-based organizations? This study describes the perceptions of individually interviewed spiritual leaders of the disease control measures used during the recent SARS outbreak in Toronto. Four central themes were identified: the relationship between religious obligation and civic responsibilities; the role of faith-based organizations in supporting public health restrictive measures; the reciprocal obligations of public health and religious communities during restrictions; and justifiable limits to duties to (...) care. We conclude that, within certain constraints, spiritual leaders find restrictive measures ethically reasonable and that spiritual leaders can play an important role during pandemic and epidemic control planning. Public health officials should therefore include them in the early and ongoing deliberations of the criteria and logistics for implementation during public health emergencies. (shrink)

Are restrictive measures and duties to care ethically reasonably acceptable to faith-based organizations? This study describes the perceptions of individually interviewed spiritual leaders of the disease control measures used during the recent SARS outbreak in Toronto. Four central themes were identified: the relationship between religious obligation and civic responsibilities; the role of faith-based organizations in supporting public health restrictive measures; the reciprocal obligations of public health and religious communities during restrictions; and justifiable limits to duties to (...) care. We conclude that, within certain constraints, spiritual leaders find restrictive measures ethically reasonable and that spiritual leaders can play an important role during pandemic and epidemic control planning. Public health officials should therefore include them in the early and ongoing deliberations of the criteria and logistics for implementation during public health emergencies. (shrink)

John C. Fletcher, a pioneer in the field of bioethics and friend and mentor to many generations of bioethicists, died tragically on May 27th at the age of 72. The son of an Episcopal priest from Bryan, TX, Fletcher graduated in 1953 with a degree in English Literature from the University of the South in Sewanee, TN. After completing a Masters in Divinity degree from the Virginia Theological Seminary and a stint as a Fulbright scholar at the University of Heidelberg (...) in 1956, he was ordained in the Episcopal Church and received a doctorate in Christian ethics from the Union Theological Seminary in New York. After ordination, Fletcher worked in various Episcopal churches and founded the Interfaith Metropolitan Theological Seminary in Washington, D.C. However, despite his religious faith, he was also a skeptic, and renounced his ordination in the mid-1990s due to his need for ?intellectual honesty.? Fletcher began his bioethics contributions in the early 1970's, when he became a founding Fellow of the Hastings Center and eventually the first Chief of the Bioethics Program at the Clinical Center of the National Institutes of Health. At the University of Virginia in Charlottesville, he was the Founding Director of the Center for Bioethics and a professor of biomedical ethics at the medical school, and became the Kornfeld Professor of Biomedical Ethics until his retirement in 1999. Fletcher was a prominent authority and voice in the national and international bioethical dialogue through his talks, his testimonies before scientific and congressional panels, his many articles, and his bioethical and religiously-orientated books, including: An Introduction to Clinical Ethics (1997), Coping with Genetic Disorders: a Guide for Clergy and Parents (1982), Ethics and Human Genetics: A Cross-Cultural Perspective (1989), which he wrote with sociologist Dorothy C. Wertz. Dr. Fletcher received the Lifetime Achievement Award from the American Society of Bioethics and Humanities in 2000. With the passing of Dr. John C. Fletcher, bioethics has lost one of its great voices, a dedicated teacher and mentor, and a friend and colleague to scholars in bioethics and a host of other fields. Below is a touching tribute from one of his former students. (shrink)

The upcoming U.S. Supreme Court decision in Dobbs v. Jackson Women’s Health Organization has the potential to eliminate or severely restrict access to legal abortion care in the United States. We a...

In “The Bioethics of Environmental Injustice: Ethical, Legal, and Clinical Implications of Unhealthy Environments,” Ray and Cooper (2024) initiate needed discourse on environmental justice and the...

In the wake of the Supreme Court Decision, Dobbs v. Jackson Women’s Health Organization, Minkoff, Vullikanti, and Marshall (2024) argue that the unraveling of the constitutional right to abortion t...

The treatment of pregnant women addicted to drugs provides an especially important and illustrative example of how political and popular demands can successfully challenge professional ethical norms associated with clinical medicine — norms such as confidentiality, patient autonomy, and the right to consent to and to refuse treatment. One increasingly popular policy approach is to limit patient autonomy by coercing women in an attempt to change their behavior, either by involuntary civil commitment or by imprisoning them for drug abuse or (...) child neglect. Thirty-five states have criminally prosecuted women for substance abuse or alcohol use during pregnancy. Other states aggressively use involuntary civil commitment as a means to protect the yet-to-be-born from harm during pregnancy. Medical professionals have been forced to participate in these programs by mandatory reporting requirements. (shrink)

Berger and Miller raise important considerations regarding the ongoing relevance and use of cultural competency in medical education. In particular, the authors critique the United States’ L...

The treatment of pregnant women addicted to drugs provides an especially important and illustrative example of how political and popular demands can successfully challenge professional ethical norms associated with clinical medicine — norms such as confidentiality, patient autonomy, and the right to consent to and to refuse treatment. One increasingly popular policy approach is to limit patient autonomy by coercing women in an attempt to change their behavior, either by involuntary civil commitment or by imprisoning them for drug abuse or (...) child neglect. Thirty-five states have criminally prosecuted women for substance abuse or alcohol use during pregnancy. Other states aggressively use involuntary civil commitment as a means to protect the yet-to-be-born from harm during pregnancy. Medical professionals have been forced to participate in these programs by mandatory reporting requirements. (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)

The recent Minnesota case of In re Emergency Guardianship of Albert Barnes illustrates an emerging class of cases where a dispute between a family proxy and a hospital over “medical futility” requires legal resolution. The case was further complicated by the patient’s spouse who fraudulently claimed to be the patient’s designated health care proxy and who misrepresented the patient’s previously expressed treatment preferences. Barnes demonstrates the degree of significant administrative and institutional support to the health care team, ethics (...) consultants, and futility committees that is required when a futility dispute escalates to the need for judicial resolution. An institutional futility policy, especially one that is endorsed by other regional medical centers and organizations, is an important foundation for a hospital that seeks judicial support in a dispute over medical futility in end of life care. (shrink)

The conflict between pregnant women freely using cocaine and the well-being of fetuses presents a difficult social problem. Since 1985, at least 200 women, in thirty states, have been criminally prosecuted for using illicit drugs or alcohol during pregnancy. Such policies enjoy considerable public and political support. Nonetheless, treatment programs that include referral to law enforcement officials raise serious ethical and legal issues for hospitals and health care providers. In this paper, we assess the development of one medical university's (...) controversial treatment program for pregnant women addicted to cocaine.In October 1989, the Medical University of South Carolina instituted a new program, called the Interagency Policy on Management of Substance Abuse During Pregnancy, designed “to ensure appropriate management of patients abusing illegal drugs during pregnancy.” This program required some pregnant women to seek drug counseling and prenatal care under the threat of criminal sanctions. (shrink)

The conflict between pregnant women freely using cocaine and the well-being of fetuses presents a difficult social problem. Since 1985, at least 200 women, in thirty states, have been criminally prosecuted for using illicit drugs or alcohol during pregnancy. Such policies enjoy considerable public and political support. Nonetheless, treatment programs that include referral to law enforcement officials raise serious ethical and legal issues for hospitals and health care providers. In this paper, we assess the development of one medical university's (...) controversial treatment program for pregnant women addicted to cocaine.In October 1989, the Medical University of South Carolina instituted a new program, called the Interagency Policy on Management of Substance Abuse During Pregnancy, designed “to ensure appropriate management of patients abusing illegal drugs during pregnancy.” This program required some pregnant women to seek drug counseling and prenatal care under the threat of criminal sanctions. (shrink)

Background Noninvasive prenatal testing (NIPT) designed to screen for fetal genetic conditions, is increasingly being implemented as a part of routine prenatal care screening in the United States (US). However, these advances in reproductive genetic technology necessitate empirical research on the ethical and social implications of NIPT among populations underrepresented in genetic research, particularly Black women with sickle cell disease (SCD).Methods Forty (N = 40) semi-structured interviews were conducted virtually with Black women in the US (19 participants with SCD; 21 (...) participants without SCD) from June 2021 to January 2022. We employed a qualitative approach to examine the study participants’ perceptions of the potential advancement of NIPT for screening SCD in the fetus. Data were analyzed using NVivo 12 qualitative software.Results The themes revealed the complexities involving the intersectional lived experiences of SCD, prenatal care, lack of synergy among health providers, and NIPT decision-making. The results further revealed that even when Black women have shared commonalities in their lived experiences while navigating SCD and motherhood, their perceptions of NIPT screening technologies are divergent.Conclusion Expanding the ethical discourse on the social implications of NIPT is critical to fully elucidate how Black women perceive NIPT’s utility, particularly as NIPT advances to screen for SCD in the fetus. Neglecting to include Black women with genetic conditions in empirical studies on NIPT may contribute to ongoing health inequities and limit and constrain reproductive choices among Black women with and without SCD. (shrink)

Background In April 2019, our hospital transitioned to an electronic patient record system and patient portal. MyGOSH enables young people aged 12 years or older and their parents to access results, documentation, appointments, and to communicate with their care team. Aims A focus group was conducted to explore the ethical and legal considerations of young people and their parents using a patient portal from the perspective of hospital Ethics Committee members. Participants and research context Members of the hospital Paediatric Bioethics (...) Centre were recruited. Written informed consent was provided by all participants. Research design The focus group discussion was recorded, transcribed verbatim and analysed using thematic analysis. Ethical considerations Health Research Authority Research Ethics Committee Approval was granted by London Southeast REC. Results Four themes, and sub-themes, were identified: granting access – complexities of assessing competence/capacity, exclusion from MyGOSH due to non-disclosure of diagnosis, and truth-telling; inequalities resulting in inequities – complexities of inequity in access; responding to change – providing support and managing expectations; engagement, empowerment and understanding – data safety, empowering young people to take ownership of their health data, a one-size fits all system may not meet the needs of all families, and early engagement with young people/parents. Discussion Giving families portal access can increase engagement, empowering them to be more involved in care, yet poses challenges for all. Complexities exist in the assessment for portal access, and supporting and managing user expectations whilst providing an equitable service. Conclusions Ongoing support is required for all stakeholders following patient portal implementation to navigate the ethical and legal complexities, and to promote equity and portal utility for patient benefit. (shrink)

Examines the growing popularity of alternative medicine, and discusses the mind-body connection in healing.

The widespread confusion of Nature with God and "natural" with holy has far-reaching negative consequences, from misinformation about everyday food and health choices to mistaken justifications of sexism, racism, and flawed economic policies.

Over the past three decades more than 200 children have died in the U.S. of treatable illnesses as a result of their parents relying on spiritual healing rather than conventional medical treatment. Thirty-nine states have laws that protect parents from criminal prosecution when their children die as a result of not receiving medical care. As physicians and citizens, we must choose between protecting the welfare of children and maintaining respect for the rights of parents to practice the religion of their (...) choice and to make important decisions for their children. In order to make and defend such choices, it is essential that we as health care professionals understand the history and background of such practices and the legal aspects of previous cases, as well as formulate an ethical construct by which to begin a dialogue with the religious communities and others who share similar beliefs about spiritual healing. In this paper, we provide a framework for these requirements. (shrink)

There is a curious asymmetry in cases where the use of religious language involves a breakdown in communication and leads to a seemingly intractable dispute. Why does the use of religious language in such cases almost always arise on the side of patients and their families, rather than on the side of clinicians or others who work in healthcare settings? I suggest that the intractable disputes arise when patients and their families use religious language to frame their problem and the (...) possibilities of solution. Unlike clinicians, they are not bilingual and thus lack the capacity to understand and negotiate differences in terms that are responsive to those who work in healthcare settings. After considering a representative case, I explore whether an ethics consultant or chaplain can function as a translator and suggest that, at best, such efforts at mediation depend on contingent aspects of a case and will only be partially successful. To appreciate limits on the role for bilingual translators, I consider a futility dispute where a parent using religious language demands that everything be done for a permanently unconscious child. I challenge the traditional interpretation that says the parent values “mere duration of biological life irrespective of quality.” From a religious perspective, human life is never “merely biological.” This effort to slot the dispute into standard philosophical schemas misses what is crucial in the dispute. I suggest that a better interpretation views the dispute at a meta-level as one about whether withholding and withdrawing care is morally distinguishable from killing. Curiously, this interpretation makes the advocate of futile care into an ally of those “quality of life” advocates who also challenge this distinction. The crux of their dispute now rests on the normative ethics of killing. While I think my interpretation comes much closer to the views of many who demand ‘futile care,’ I suggest that it still falls short because of the way it reconstructs the religious concerns in nonreligious terms. I close by considering an analogy between the language of suffering and the language of faith, suggesting that both require a much richer understanding of the narratives that orient the lives of patients and their families. (shrink)

Studies concerning the relationship between religion and mental health have provided substantial evidence for the existence of a positive relationship. Nevertheless, it remains largely unclear which aspects of both religion and mental health take part in this relationship. The present study uses multiple measures of religion and of mental health to obtain a more refined view of this relationship. The results show the importance of distinguishing between if a person believes and how a person believes. Religious (...) persons who have a symbolic attitude towards religion scored higher on positive aspects of mental health. No significant results were found for negative mental health. (shrink)

Clinical ethics is a relatively new discipline within medicine, generated not so much by the Can we . . . ? questions of fact and prognosis that physicians ...

In this book by the award-winning author of Just Healthcare, Norman Daniels develops a comprehensive theory of justice for health that answers three key questions: what is the special moral importance of health? When are health inequalities unjust? How can we meet health needs fairly when we cannot meet them all? Daniels' theory has implications for national and global health policy: can we meet health needs fairly in ageing societies? Or protect health in (...) the workplace while respecting individual liberty? Or meet professional obligations and obligations of justice without conflict? When is an effort to reduce health disparities, or to set priorities in realising a human right to health, fair? What do richer, healthier societies owe poorer, sicker societies? Just Health: Meeting Health Needs Fairly explores the many ways that social justice is good for the health of populations in developed and developing countries. (shrink)

“HTA is a multidisciplinary process that summarizes information about the medical, social, economic and ethical issues related to the use of a health technology in a systematic, transparent, unbiased, robust manner. Its aim is to inform the formulation of safe, effective, health policies that are patient focused, and seek to achieve best value” (EUnetHTA 2007). Even though the assessment of ethical aspects of a health technology is listed as one of the objectives of a HTA process, (...) in practice, the integration of these dimensions into reports remains limited. The article is focused on four points: 1. the HTA concept; 2. the difficult HTA-ethics relationship; 3. the ethical issues in HTA; 4. the methods for integrating ethical analysis into HTA. (shrink)

The Presbyterian and Reformed tradition, as one representation of Biblical theology and ethics, has considerable application to physical health. This perspective is effectively embodied in the Westminster Confession of Faith which includes “the moral law,” especially as illustrated in the Larger Catechism Questions and Answers on the Ten Commandments. The WCF has many Biblical principles that promote health and prevent disease, for example, the Seventh Commandment can be “extensively demonstrated empirically” that violations promote morbidity and mortality. This (...) result markedly contrasts with the evolutionary and politically correct foundation of modern medicine that essentially promotes disease and death. Sexual “freedom” has become “slavery” to its disastrous results. Further, the modern attempt to define and treat “mental illness” does not begin to address the needs of patients and their families. By excluding the spiritual dimension of men and women, psychology and psychiatry has no moral answers by the naturalistic fallacy, and thus their various cognitive and pharmaceutical approaches mostly make “mental” problems worse. In this essay I present what the Bible claims through the WCF, and using modern medicine’s own “evidence-based medicine,” demonstrate how this approach has a strategic advantage in promoting health over contemporary medical ethics and practices. (shrink)

In his 1917 lecture “Science as a Vocation,” Max Weber challenged current and aspiring scholars to abandon any pretense that science bears within itself any meaning. In a disenchanted age, he argued, science could at best offer “knowledge of the techniques whereby we can control life... through calculation,” and any meaning or moral direction to scientific research—including religious meaning—must be imposed on it from without. Weber presciently anticipated that many present-day health care practitioners would struggle to find meaning for (...) their work within complex “state-capitalist” health care systems, along with predictable quasi-religious responses. But how are Christian practitioners to practice faithfully in a disenchanted age? The authors of this special issue lean deeply into the loci of Christian theology and Christian practice, some challenging the views of the body and of nature that informed Weber’s theory of disenchantment, and all offering resources and paths by which practitioners might “look the fate of the age full in the face” with courage and wisdom. (shrink)